| I need some input about the care of my almost 4 year old Golden girl (ex-show dog, juniors dog). She probably was ill for some time but the decline was so subtle it wasn't picked up by me. In fact in March she has her eyes checked and cardiac done prior to a June planned breeding (just needed her hips done). In late April I took her to be checked because she was so lethargic. Her PCV was 19 or so and by the time I got her to the ER she had dropped to 9. She had the standard rocky course with high bili, etc. and was on 100 % O2 and more for about a week. Her AIHA was non-regenerative. She has had 8 units of packed cells over the last two months!! Two weeks ago her PCV was 32 and I thought she was on the way to a recovery. On Wednesday her retic count had dropped to 12,600 and her PCV is 20, so again she is non-regenerative. She is on 300 mg cyclosporine, 80 mg prednisone, 15 mg famotidine, 5 mg amlodipine, 1/4 baby aspirin, baytril, doxy, Omega 1 gram/day, soloxine .6 2x day, denamarin 2.5 tabs/day, super vita chews 3x day (just until more Pet tinic arrives), sulcrafate 2 x/day, and missing link. She is now on a grain free diet and gets sweet potato, white pot., veggies, chicken, fish, occ.beef. In her old life she got lots of raw foods. Her first cyclosporine level was 156 and she was bumped up to 400 mg/day but couldn't handle the dosage(she drooled and acted even more ill). Her second trough test (on 400 mg) was only 104 and done at Cornell. Another cyclosporine test will be done in 2 weeks. I am hoping the numbers reflect the different test sites. She gets the cyclosporine with food. Has anyone had a dog crash right away while numbers were going up? Dr Dodds (she kindly emailed our vet) thinks maybe because Chloe was due to go into season her estrogen level might have triggered the relapse. Now I have a dog who looks desperately ill and spent time in the ER over the weekend with a PO2 in the low-mid 90's and a PCV of 20. The ER vet thinks she might have a blood clot that is causing her labored breathing. I am praying that it desolves on its own if we can just hang in there. There are no plans for heparin, etc. I have been following all the threads and think of your lovely dogs fighting the same lousy battle. Anything we are missing here? Words of encouragement?! Chloe is our heart dog. We lost a 5 year old Golden to hemangio 3 years ago and thought nothing could be worse than hemangio. Boy was I wrong. We also have 2 other dogs, a Wirehaired Pointing Griffon and a standard poodle (both finished). Chloe is our alpha and it has certainly shaken up our dog pack with her so ill. Suggestions on how to pull her back up and out of the relapse? |
| Cheri Maryland |
| Cheri, I am so sorry to hear of Chloe's diagnosis. You sound like you are on the right track. I cannot offer you much in the way of technical support, but there are many others here who know this awful disease inside and out, unfortunately. Your last paragraph caught my eye. I just recently (2 weeks ago) lost my Toqua girl to hemangio. She fought for 3.5 months. She was also our alpha and our Fin is now quite lost without her. We will say a prayer for your Chloe tonight. I'm sure I won't be the only one to say this - many dogs beat this and go on to live long lives. Stay strong. Thoughts are with you. Jessi & Fin |
| Jessi BC |
| Cheri, I am so sorry to hear about Chloe. My dog Chance had a similar condition. Non-regenerative anemia is a bit more difficult to treat in some cases, but we were successful once we added the cyclosporine. At his weigh then of 98 lbs, Dr. Dodds prescribed 225 mg on a pulse dose (m-f, s,s off) to start and then decreased that after a few weeks on this loading dose. Yes, Chance acted a bit spacey as though the drug was hallucinogenic. But it was for a short time while on the highest dose and it was efficacious. Dr. Dodds advised me not to worry about doing a trough test and in fact only three weeks after we started him on it, he began to become regenerative again. Within a few months he was back to health and within another month or so, we were off all meds. You are using virtually every med and supplement that we used, there is nothing else that you could be doing. Remember that you must decrease the prednisone because of the side effects, that is why you are using the cyclosporine. She has been on pred for a very long time and that needs to be tapered down. Chance was on the same dose of pred (80mg) and the side effects were devastating. Could you write to Dr. Dodds and remind her that she used pulse dosing with Chance and that she asked us to not use more than 225 mg for his highest dose? She may have changed her protocol in the past 3 years, but it is at least worth asking her about this. I think with the great care you took of Chloe prior to this, that she has a solid background of good health and may have a very good chance of surviving this. I can assure you that we were giving meds around the clock and I was up all hours of the night making him special foods. my best patrice |
| Patrice NYS |
| Thank you so much for your support. Chloe weighed 62 pounds when she came home May 2 and has bloomed to 74 on the prednisone. When her PCV dropped last week to 20, her prednisone was bumped up to 40 MF twice a day. I am pretty sure Dr. Dodds is aware of the 300 mg of cyclosporine. The internist actually had it up to 400 mg based on the low (156) cyclosporine test but I switched to Chloe's regular vet who reduced the cyclosporine to 300 mg at the same time the prednisone was increased to 80 mg/day. The side effects of the prednisone are horrific. If she is now non-regenerative, does it make sense to decrease the prednisone or wait until her retic count goes up above 60,000? Throughout all of this though Chloe has remained a gentle loving girl with her love of food. Right now she is lying on the cool floor resting with a fan blowing on her. She willingly takes her meds but has such great difficulty getting up to stand and go out. She is very weak and only allowed down two steps through our garage to her x-pen. Did Chance have the pulse dose of cyclosporine right from the start or only after he started to regenerate RBC's? I keep hoping Chloe can be pushed again to regenerate. Originally she had a bone marrow aspiration done as the vet thought she had stage 5 B lymphoma. No fur has grown back in more than two months though although reading the posts it sounds like she should grow fur again. A naked furbaby is the least of my worries. Her belly is very distended (I guess through lax muscles because of the pred) and her poor spleen is enlarged and hard. I spend my time counting respirations, checking gum color (bright pink even with a PCV of 20, fooled the docs too). Anything else I can do to help Chloe? I am so happy I found this forum. I tried to post in late April but my lack of computer skills got in the way. Does anyone have a name of an internist/hematologist at Penn? It is the closest vet school center. Regards to you all. Cheri |
| Cheri Maryland |
| Chei Please know that I am keep Chole in my prayers and I am so sorry you are going through this. For some reason I was told that the Cyclosporine should not be given with food, so I have been giving it to Ginger without food. Maybe you can check into giving with food vs without food, and if it does make a difference. Ginger was also put on Azathioprine, I did not see that Chole was on that and wondered if they have tried that. Please keep us posted on how Chole is doing. Cheryl & Ginger |
| Cheryl & Ginger Pineville Pa |
| Atopica product insert. Atopica is cyclosporine for veterinary use, same drug. http://www.us.atopica.com/pdf/product-insert.pdf "ATOPICA should be given at least one hour before or two hours after a meal." my best patrice |
| Patrice NYS |
| Hello I just found this forum today. I have a 4 months old puppy who has an anemia, but vets so far cannot tell me what kind of anemia it is. It could be IMHA but they say that so young pups usually do not get it. Is it true? Barbara |
| Barbara Australia |
| Hi Barb, I have just responded to your email. If you can figure out how, start a new thread with your question so everyone will know where you are and can respond to you. See the upper right hand menu items for NEW THREAD. my best patrice |
| Patrice NYS |
| I have started a new thread for Barbara. Please use that thread to reply to her. |
| Joanne MN |
| Cheri, I'm so sorry to hear that Chloe has this terrible disease. You've got rock solid advise above. I'm just wondering what the aspirate told the vet. Did it reveal anything do you know? If not perhaps a bone marrow biopsy might be a future step. Oh, and I used to give Tessy's cyclo *with* food and the trough tests remained the same!!! I know of lots of others that also do so with food. It makes it sooo much easier on their stomachs! I'm not talking a whole lot of food...just a small handfull before you give it. Good Luck and keep us posted. Johnny & Tessy |
| Johnny |
| Update on Chloe and Dr. Dodd's feedback. She was kind enough to respond almost immediately to my questions. June 22 PCV 22 (on 60 mg prednisone and 400 mg cyclosporine), regenerative. July 1 HCT 20.1 RETIC 12,600 obviously on a new downward trend July 2 HCT 15 per vet and referred to ER July 3 PCV 19% not transfused, PO2 98 in ER July 4 PCV 20 RETIC 17.5K PO2 93-97 with increased respiratory effort Dr. at ER thought maybe she has a blood clot. Spent 13 hours in ICU. July 5 PCV 21 PO2 98 at vet July 7 PCV 26.6 RETIC 356,870 BP 109/46 (on 5 mg Amlodipine) at vet. Regenerative again!! Here are my questions for Dr.Dodds and her answers. Hopefully this information can help another dog. 1. Is this too soon to decrease the prednisone? I’d keep her on the 80 mg pred dose for 10 days, then reduce to 60 mg daily for 10 days, then to 40 mg daily. 2. At what point do you reduce the prednisone? Once she’s on 40 mg daily, you can reduce it to 30 mg daily after 10 days, then reduce dose in 7-10 day increments to 20, then 10 mg daily. Is it too soon with a hct of 26.6 that just went up? It could be ; better to be conservative , unless the prednisone side effects on her liver function become a significant issue. 3. Can Chloe continue to take the cyclosporine daily at 150 mg AM and PM (with food as empty stomach made her very ill)? Yes, but the dose should be reduced as well , once the absolute lymphocyte count gets between 500-1000 /uL . Can reduce to 100 mg twice' daily, then to 50 mg twice daily for maintenance – as long as is needed to control her immune-mediated disease. 4. Should she take it only M-F (question from Patrice who said Chance was pulsed with cyclosporine but a max of 225 mg)? Yes, that’s a good option, and the one we typically prefer. 5. Okay to drop the amlodipine in a week? Yes. Need to recheck her BP? Optional 6. How could her retic count jump so quickly from 17,500 July 4 to over 300K on July 7? I am sure not complaining though. By releasing tissue microcirculatory sequestered young rbcs , in spleen, liver, lung and bone narrow. 7. How high does her PCV have to be in order to do a laparoscopic spay? She can be spayed anytime her PCV is stable at or above 25%. She should have come into season in June. 8. Possible increase in estrogen a cause of the falling PCV? Yes. She is one of our showdogs and in March appeared to be fine with a cardiac clearance and normal CERF. Needed hips done for a planned breeding in June. Never will be bred but feel like we need to spay her too. Definitely. You can see my questions and Dr. Dodds' answers. Our vet wanted to immediately reduce the prednisone starting today but I wanted to check with Dr.Dodds first. Thank goodness I checked with her as it is much too soon to drop it. I am going to skip the cyclosporine this weekend though and see what happens. Chloe was a bit perkier tonight too and asked for more food so I treated her to poached eggs with Pet-tinic. I really think the sulcralfate has helped Chloe tolerate the drugs more easily. Does anyone keep their dog on sulcralfate along with the famotidine for the duration while using cyclosporine? You all have been a great source of information. Without you I might have just gone along with the vet's order to drop the prednisone way too soon. Chloe thanks you too in a drooly way. There may be light at the end of the dark days yet. Like everyone else, I am so tired of crying. I am determined to win this war. I am thinking of you all fighting the same battle. Cheri |
| Cheri Maryland |
| Cheri, that's so awesome you got Dr. Dodds on board!!! She knows her stuff that's for sure...I think she deserves a medal of sorts! Good to hear Chloe is regenerating blood again! That is such a good thing! No doubt the sucralfate has helped with the toleration of meds. If things are looking good and things are improving then I can't see any reason to change things. Why mess with something that's working right! Did you send blood out to Dr. Dodds or are you planning on? Her advise is priceless but her alaysis of blood is also priceless!! A thought for you maybe. Keep us posted and give Chloe some BIG OLE Canadian HUGS for me. Johnny & Tessy |
| Johnny |
| Update on Chloe: Chloe's labs for the last 3 weeks are below: Draw dates HCT Retic lymphocytes prednisone dose cyclosporine 300mg July 7 26.6 356,870 1044 80 mg/day July 14 28.7 133,730 2176 80 July 21 31.4 39,270 663 60 Dr. Dodds (Wonderful Dr.Dodds is how I think of her) just called me to straighten out my confused state of mind. I thought that the drop in retic count meant Chloe was now non-regenerative again and relapsing, but Dr.Dodds told me that Chloe is responding perfectly to the drop in prednisone by increasing her hemotcrit and the cyclosporine is dropping her lymphocytes. Chloe doesn't need to be making so many reticulocytes right now at 31.4. She is actually doing much better! Yeah! Chloe still looks awful though, weak, distended belly, drowsy, head always down but with a wagging Golden tail. She is eating well (on grain-free diet per Dr. Dodds), drinking a bit less now that the prednisone has been reduced to 60 mg/day. I can't say enough good things about Dr. Dodds. She does not know me or Chloe at all and took the time out of her incredibly busy and full day to call me to go over the lab work. Thank God for Dr. Dodds' great heart. I am so glad the folks on this forum put me in touch with her. I just hope Chloe keeps improving. Please don't hesitate for even one second about emailing Dr. Dodds! For those who are or have faced transfusions-Chloe had 8 units of packed cells during the first 6 weeks of illness and had one transfusion reaction with the first unit. My vet bills have exceeded $15,000 but much has been reimbursed through Chloe's terrific low cost insurance plan which I have renewed religiously since she was about a year old. I will never again go without pet insurance! Thinking of you all in our fight against IMHA. Cheri and Chloe |
| cheri Maryland |
| Cheri, Excellent news! Yes, reticulocytes are baby blood cells. Once made they turn into red blood cells in about 3-4 days. Thus you see a decrease in reticulocytes and an increase in red blood cells (as inferred by the increase in hematocrit.) Lymphocytes are decreased significantly, indicating that the immunosuppressive drugs are doing their job suppressing the white blood cells responsible for the destruction. my best patrice |
| Patrice NYS |
| Sounds like things are really looking up for Chloe and that is wonderful news!!! Give her time and her old personality will come through, especially once the meds are reduced. It will just happen gradually over time, not one day she will wake up and be fine. Sending a BIG golden hug!!! Cheryl & Ginger |
| Cheryl & Ginger Pineville PA |
| Cheri, That is great news. I am glad to hear Chloe is improving. It is a difficult and expensive journey. Dr. Dodds has been so helpful to so many people. I know it is difficult when you are spending so much on treating the AIHA but it would be nice if the people that seek her advice could make a small donation to her Rabies Challenge Fund. Hopefully that study will prove once and for all that we are over vaccinating our animals. My favorite charities will always be Meisha's Hope and any that are trying to open peoples eyes about the health of our beloved pets. Penny |
| Penny Lytle Creek Calif |
| Can't wait to see what the next retic count is and the hct. Good to hear Chloe is responding the way she is. Thoughts and prayers for you both. Johnny & Tessy |
| Johnny |
| Hi Cheri I was wondering if you let us know how Chloe doing? Thanks Cheryl & Ginger |
| Cheryl & Ginger Pineville PA |
| I have always hated roller coasters and that is what IMHA reminds me of. Chloe went from a PCV of 31.4 on July 21 to PCV of 27.5 on July 29, retic 148,120 and lymphs 519. Dr. Dodds has been cutting the prednisone down and now Chloe is at 30 mg/day (down from 80) along with 300 mg of cyclosporine and all the other standards. I did add milk thistle to the mix this week although Chloe has been on Denamarin since May 1. Dr. Dodds was not really concerned about the PCV drop but of course I panicked. Dr.Dodds said that lots of dogs settled in at about 28 for a year or so. Chloe remains lethargic, hungry, drooly, and weak with a distended belly. The only thing that keeps me going is her sweet Golden personality and her strong will. I hope that as the prednisone dose decreases she will gain back some of her muscle tone. She was always a couch potato but the prednisone has made her very shaky. She can barely walk to the x-pen and doing the two steps to get outside is very hard for her. I feel really lucky though that she has made it 3 1/2 months! She and I are going the distance together. I did discover Pet Tinic in a slightly different formula but same iron content in a gallon size (for foals/dogs/cats). Wish I had found it 6 four ounce bottles ago as I could have saved a fortune. No labs this week though. My Wirehaired Pointing Griffon was diagnosed with lyme last week and I worried that lyme would trigger IMHA but he appears pretty feisty. Hugs and paws to you, Cheri and Chloe |
| Cheri Maryland |
| _-_-_-_-_-WAVING FRANTICALLY-_-_-_-_-_ Cheri, when you talk about the crit staying in the high 20's for extended periods I know exactly what you're talking about!!! Tessy stayed in this range for what seemed to be an eternity (between 27 & 30). Everytime it went down a couple points I almost had a meltdown! LOL After a few months of the numbers doing this it didn't even bother me anymore. Eventually with time the crit slowly started to rice. Then it hovered in the33-35 range for awhile before going up yet again! Not all dogs follow a similar pattern but I've seen many like this. I'd sit here and watch others post how fast their dogs crits were climbing and it made me wonder what i was doing wrong. I look back and wonder nowif i should have maybe did something different but you know what...Tessy's laying here next to me as I type this and is near perfect health now....and a little stinker to boot!!! The numbers you posted look great...exactly what to be expected and wanted. The lymphs are in a perfect range right now and the retics have gone up which means the bone marrow is functioning properly! It's very likely you'll see an increase in the crit within the next month. Lethargy could very well be from the cyclo and even pred causes this. She'll be hungry probably right up until you drop the pred and the distended belly...well every dog is different! Tessy stills has a potbelly but nothing like what she had! This will go away but it'll take time. I'm assuming you're noticing small differences already just from the pred reductions you did already. REmember, you have Dr. Dodds on board and this lady really knows what she's doing! You're in excellent hands amd many here can concur. Keep things going slow and ALWAYS (((ALWAYS))) be cautious. Keep the path and try to relax. It gets better with time. Don't be shy...keep us posted. Thoughts prayers and best wishes, Johnny Tessy & Sadie |
| Johnny |
| Chloe had a CBC with retic drawn today which will be back tomorrow. The tech noticed 3 large ulcers on Chloe's tongue, one on each side and a large one underneath. They are whitish-yellow and look like large canker sores. Chloe is eating and drinking well, cries at night, has stinky, drooly breath. She started with diarrhea yesterday and I began Endosorb. Has anyone seen ulcers like these? The prednisone is at 30mg/day now and gets reduced again August 13. Has anyone ever heard of using the new human medication Debacterol which cures ulcers in one treatment dose (topical). It is by prescription only so that might be a challenge. I just hate to see her in pain. I can have a chem panel drawn to rule out kidney disease but I suspect this is all immune related. Help! Cheri |
| Cheri Maryland |
| Cheri, Poor Chloe, ulcers on her tongue, that can't be comfortable. I am pretty certain they are caused by the high doses of prednisone and will disappear once the doses go down. My poodle boy Kahlu had gums covered in ulcers but they disappeared as fast as they came. Unfortunately I can't remember if we used any specific medication for the ulcers, but I don't think so. maybe you could give the vet a call and see if they know anything that would help Chloe's discomfort. Althogh, if she is drinking and eating well, it can't be that bad? To help with the diarrhea, we have used canned pumpkin. One or two table spoons for a 60lbs standard poodle. Just make sure it is plain pumpkin and not pie filling. If that does not take care of it in a few days it is probably better to talk to the vet and put her on some medication like Metranidazol (sp) Best wishes, Brigitte & the poodle boys |
| Brigitte BC Canada |
| My Golden Ginger had what sounds like those same ulcers on her tongue and once we reduced the pred they went away. On my vets advice I made a a paste of crushed sucralfate and water and apply it to her tongue a few times a day but... she would lick it off immediately so I am not sure it did her any good. The ulcers did not seem to bother Ginger at her at all and she showed no symtoms from them. |
| Cheryl & Ginger Pineville PA |
| Thank you Brigitte and Cheryl for the quick responses. I am having a chem panel done tomorrow at Dr. Dodds' suggestion to rule out any systemic problems. I made a slurry of sucralfate in several ounces of water and stuck paper thin slices of chicken to the sides of the container. Chloe had to lick the slurry to try to get the chicken and hopefully that coated her tongue. I haven't been able to find pumpkin here (soon fresh in the stores though) so have used Endosorb for Chloe. I think the ulcers hurt her because she drools and cries but keeps on eating her food. She ate even with a pcv of 9 and on 100% oxygen. Don't stand between Chloe and her food! The prednisone is down to 30mg/day and drops again on Friday to 20mg/day.Her CBC will be back in the morning. I will post her new results here and hunt for pumpkin meanwhile. I am going to ask the vet about treating the ulcers with Debacterol. Cheri and Chloe |
| Cheri Maryland |
| I did find pumpkin in a small local pet food store, so maybe call around and some pet store may carry it. Hope Chole feels better soon. Cheryl & Ginger |
| Cheryl & Ginger Pinevile Pa |
| Chloe weighed in at 78 today, her highest ever. The vet did not know what caused the ulcers but think they may be tooth related from chewing on marrow bones (her only raw vice). She is now on clindamycin for 10 days and a chem panel was sent out. Her CBC came back and it is Gold!HCT 31.8, reticulocytes 64,260 and lymphocytes 936, WBC's 11.7 (normal), platelets slighty up at 499. Thank you Dr. Dodds! Her prednisone is going down to 20mg/day tomorrow and then in 10 days Dr. Dodds said to drop her to 10. I am afraid of the number 10 and will probably take her to 15 first for 10 days and see what happens. I am so looking forward to getting rid of the Cushing's symptoms but just having her alive after almost 4 months of this wretched disease is thrill enough. Wish I had magic to zap the ulcers. I bet she has them in her belly too.No wonder she cries. We cry together. Searching for pumpkin now. Thank you all for your help. Cheri and Chloe |
| cheri Maryland |
| Chloe's chem panel came back mostly okay per Dr. Dodds but her GGTP came back high so Dr. Dodds recommended an ultrasound to make sure her bile duct is patent. I had it done today and the radiologist said everything looked fine (liver, kidneys,spleen, and more). Chloe loved the scan even though she was upside down with her four legs in the air. Her belly is still naked since being shaved in April and she thought the transducer and gel being rubbed all over was the greatest belly rub ever and it lasted about 30 minutes. She happily got up and wagged for the staff. I am beginning to feel like I am getting my girl back. She will start ursodiol in a day or so as soon as I find it in a pharmacy. Dr.Dodds says it will help remove the bile and lower the liver levels. Finally down to 20 mg of prednisone a day.The mouth ulcers look smaller too. I haven't found pumpkin but now her diarrhea is gone. Four months and counting-my miracle girl. I read all of the posts and feel like there is a huge extended family around the world. I am always thinking of you and your dogs. Cheri |
| Cheri Maryland |
| My heart goes out to you. My wonderful Golden, Jack, went in to the vet on a Wed. was diagnosed on Thurs and passed on Sunday. My heart was broken, so soon, so fast, such a waste. Never EVER heard of this ES before until Jack got sick. I can't help you with the stats like all the other wonderful folks here can, but I can say this, everyone here feels your pain and will support you in all ways. I was just too new to this and Jack went so fast, I couldn't comprehend all the details. So I will just simply say - you have all our prayers and hopes and wishes. Mary & Molly (and Jack) |
| Mary Wright Gainesville |
| Hi Cheri -- Just finished reading your thread on Chloe. You and she have been through an amazing battle together. It sounds like you have been doing anything you could do, and it's wonderful that Dr. Dodds is there with you all the way. I'm sending best wishes your way that Chloe continues to improve. |
| Brenda VA |
| Cheri, Thinking of you and Chloe and hope that each day brings more improvement. Penny |
| Penny Lytle Creek Calif |
| I thought I would post GREAT NEWS! Chloe's hematocrit was 37.3 this week- a number I never thought we would see considering her low was 9 in April. She is now down to 15 mg/prednisone a day and goes to 10 mg this week for 5 days and then to 7.5 for 5 days. Dr. Dodds is cutting her cyclosporine to 200mg/day. This is so hard to believe after 8 units of blood, one relapse 2 months ago with possible lung blood clot, etc.,etc. Every day she seems a bit stronger although this huge belly is fearsome. I am just so happy I got these extra 4 months with her. No vet bashing here but consider the disease treatment a learning curve for vets willing to listen to Dr. Dodds! We really need to get a standard protocol written up and published! I want to thank Chloe's insurance too-Pet Plan, which has a $200 deductible and has covered 80% of the bills. Without the insurance I could never have done this. If anyone wants info on the insurance, please let me know. I never would have made this journey without the wonderful encouragement here but I believed what I read and Chloe refused to give up. |
| Cheri Maryland |
| Cheri, This is such pleasing news to me. I have had a tough week and hearing this has brightened my day. Congratulations! You have done a significant amount of work on Chloe's behalf to bring her back to health. Please take some time for yourself at this point. I always said I would wait until Chance got better to cry and I was so relieved to feel that by then, I didn't need to. I took a night off to go to a jazz concert and met my favorite artist in person! Keep us updated as you decrease the cyclosporine. Remember to buy the Atopica carefully so you are not stuck with a bunch of 100's or 50's. my best patrice |
| Patrice NYS |
| Patrice, I don't even have Atopica! I was given a script for a generic human cyclosporine made by Teva and that is what we have been using. Chloe never even reached the right blood level when the trough tests were done. She wasn't even close. I found that Cornell's lab does the cyclosporine level for $52 (after getting ripped off for over $350 at the specialist's office). I am going to use up the configurations I have now and hopefully will have enough for the next month or so. Dr.Dodds seems to use the lymphocyte count as the best indicator for whether the immunosuppressants are working. I found a much less expensive formulation similar to Pet-tinic made by the same company. It is Lixotinic (says for horses and dogs on it) and comes in a gallon jug for about $100. I was going through the 4 oz Pet-tinic at $9/bottle and got tired of giving Amazon.com my money for a bottle that we zipped through at 14cc/day. Wish we could do a list of where to get everything and best prices for each. Would be hard though as we are all over the world! If anyone is in Maryland or nearby, I can share the Lixotinic. Chloe is not there yet but what a happy week for us. I smile and then cry again because I know how much the other dog owners are suffering. My kids thought I was crazy doing healing touch on Chloe, but it is free, uses only my hands that don't even touch her. I figure that I am a midwife and can do weird things if it might help Chloe and it only took a few minutes. Don't know if it worked or it was all the prayers sent her way or maybe a combination of everything. All of the dogs fighting this disease (and the ones that sadly lost the fight) are always in my thoughts. Cheri |
| Cheri Maryland |
| Cheri, I have the highest respect for Dr. Dodds' clinical knowledge. When she told me not to bother with the cyclosporine trough tests, I didn't. We were dosing Chance only 5 days a week anyway, with weekends off. So doing a trough test would have been silly. So yes, watching the lymphs was the best indicator. I have met her in person, attending a full day seminar on vaccinations and thyroid 2 years ago. She is truly a very genuine person and cares about helping animals and their owners. During a break I asked her how she felt about her detractors in the academic world. She indicated that she continues her work each day to save the animals. I told her I was motivated to work politically to assist the work she and other colleagues of hers do. She told me it must be done one dog at a time. So that is where my head is at these days. Glad you found a substitute for Pet-Tinic. I checked the ingredients and realized I could reproduce them with fresh liver and an inexpensive bottle of human B vitamins. So I use a good B-50(daily) and 1 ounce of liver per pound of dog, per week, for the iron and other trace elements. The rest of Pet-Tinic is mostly sugar. So for a 85 pound dog about 10-12 ounces of liver a week. Or two 1"x3" pieces a day. That is the FIRST thing that Cassie eats when I put her bowl down. There are many ways to save money while treating this disease. I learned so much from her. my best patrice |
| Patrice NYS |
| Cheri, Your news brought a smile to my face this morning. Congrats to you and Chloe! |
| Penny Lytle Creek Calif |
| That is wonderful news and we were so HAPPY to read that Chloe is improving. Tell Chloe to keep up the good work:) Cheryl & Ginger |
| Cheryl & Ginger Pineville PA |
| I am so saddened to see what has happened to these beloved dogs. I wish we knew why some dogs make it and others don't. Some days I can hardly bear to read the forum and like all of you, I cry a lot. It seems to be a real miracle that Chloe is still responding well. Her prednisone is down to 10mg/day and cyclosporine down to 200mg. Every day her eyes are a bit brighter and her tail more in motion. Now when she is sleeping I don't get on my hands and knees to see if she is breathing. She no longer looks comatose, just peaceful and snoozing. She is breathing at a normal rate! I actually forgot to check her gums for several days. OMG! I feel like she is slowly coming back to life. She had a bath for the first time in months and when blowing out her fur I noticed lots of reddened areas, scab-like crusts, and other lumpy things on her skin surface. I can also feel very large sheets of thickened tissue like bendable plate glass under her skin on her legs and sides. I am just going to pray these are not tumors but caused by the heavy doses of drugs. They don't cause her any pain and might be a bit smaller now but they are really extensive. In a human I would think of a connective tissue disorder. Chloe thinks all the touching is great. The effects of the prednisone are very slowly wearing off and she is not as shaky and gets up much more easily. Still peeing every 3-4 hours though but she has cut back on the drinking finally. Extensive ascites is still present too and no fur has come back in. This is so NOT a show coat for a Golden! I know it is a very long and slow process. Patience seems to be the name of the game here. Bit by bit I see my wonderful Golden returning to us. No matter what happens, I feel very lucky that we have had her these extra four months. The vets who told me to put her down should be reading this forum! Be strong and keep fighting. I am with you the whole way. Cheri |
| Cheri Maryland |
| Cheri, that is so awesome that your Chloe is getting better! You are ib extremely good hands with Dr. Dodds! I try to recommend everyone use her services...she's the best at what she does! I'd have the vet look at the skin issues and bumps. This could very likely be caused by the pred and especially the cyclosporine! BUT should be checked out by the vet. Keep up the good work and keep us posted. Johnny & Tessy |
| Johnny |
| Cheri -- so glad to hear the great news that Chloe is getting better. My best to the both of you. And yes, Dr. Dodds is wonderful -- wish I knew of her during my sad experience with IMHA, but I'm just glad that others have benefitted from her expertise and commitment to caring for people and their beloved dogs. |
| Brenda VA |
| Good and bad news about Chloe. Her HCT yesterday was 39.5, retic 24,000 and lymphocytes 744. Her prednisone goes down to 5 mg/day starting tomorrow. Her cyclosporine is now at 200 mg/day and goes down to 150 mg/day on Monday. That is the good news. The bad news is that she now has multiple surface skin lesions (some infected) and is on antibiotics. The vet says that they are calcinosis cutitis. Can't say the lesions look like anything pictured on line. She also has very large thickened sections of tissue under her skin (some ranging in size from 4- 6 inches by 3 inches);these are huge and about 1/2 or so in thickness. They are mostly over her shoulder and thigh bones. They are not causing her any pain that I can tell. The vet said they are drug induced and will go away. I truly don't believe this and from what I have read if they are huge calcium deposits they are surgically removed. I can't figure out if I need an internist, dematologist, surgeon or oncologist! I do think I have to take her to Penn though I just hate to do a biopsy on her now that the IMHA is getting better. Oh-she also has one visible papilloma on her lip and the lesions in her mouth are much smaller. She has no itching with any of the lesions. There is no fur lost over the lesions and in fact some belly hair is growing back (just in time to be shaved again for a laparoscopic spay). Has anyone heard of this? The rest of her CBS will be back tomorrow. I didn't do a chemistry panel as her liver meds take 4-6 weeks to work. She is not on any calcium meds that I know of but apparently the iatrogenic Cushing's that she has from the prednisone can cause the calcinosis cutitis. It figures that if something odd will happen, it would happen to Chloe. Happily though she is regaining strength and spending more time awake. Her muscles are just starting to regain some tone. The Cushing's from the prednisone was quite pronounced just like her huge belly. I didn't know tumors came with Cushing's though. I still would have done the same treatment for the IMHA, just wish I had a crystal ball. Cheri and Chloe |
| Cheri Maryland |
| Cheri, I know a number of people have dealt with skin/coat issues similar to what you are describing. I believe your Vet is right that it is drug induced and will get better as she is weaned off the meds. You might want to start a new thread with that as the specific question so that more people will see it and respond with their experiences. Best to you and Chloe Penny |
| Penny Lytle Creek Calif |
| Cheri: The papilloma on her lip is most likely caused by the cyclosporine. This is one of the side effects of this medication. If I remember correctly (it's been a while since I've looked at the info on this med) they should go away once they are off the medication. I don't know about the other lesions. Sheba always had problems with hotspots while on meds - seemed to get one a few days after we'd have her groomed. Those were not fun! Hang in there - things will get better it just takes time. And all paws up on the HCT! 39.5 is great! Rita, Mike and Sheba |
| Rita IA |
| Chloe has good news! HCT 39.5, up from 37.3 just 2 weeks ago. Prednisone is down to 2.5 mg/day, cyclosporine down to 150 mg/day. She did a play bow today for the first time since April and is certainly more energetic although she still can't go up steps. Her calcinosis cutis is pretty yukky though and her fur is coming out in handfuls. I can live with this as the rest is a great improvement. I am so sorry more dogs and families have been devastated by this terrible disease. There truly seems to be no rhyme or reason for whether one of our babies survives. I can't make any sense of this. Chloe needed 8 units of packed cells so what happened that helped her make it? I hate this disease but I love Dr. Dodds! I am praying for all of our dogs. |
| Cheri Maryland |
| Chloe has good news and crummy news. The good news is that her HCT is at 41.8, cyclosporine at 100 mg/day, and prednisone at 2.5 mg/day. The bad news is that she has blood in her poop. I saw it as bright red in a morning stool yesterday and dark red at noon. By 5 PM our vet had seen her and prescribed an ampicillin for a week and redid labs. Her HCT is just about where it was last week. Sucralfate is now increased to a gram 3x day. It might be an ulcer but who knows. The sores on her tongue are healing well. I put gentian violet on all the calcinosis cutis lesions I could find and Chloe is looking fine in purple and gold. She is bouncy and perky when awake and gums are pink. Her urine is yellow so no RBC breakdown coming through there. She is scheduled for a lap spay in two weeks but who knows if it can be done if she is bleeding. My son saw dark red blood again tonight which means the blood is coming from higher up in her gut. Can this be a precursor of another relapse? I am still recuperating from our 4th of July ER weekend when the ver thought she had a clot in her lungs and her HCT dropped suddenly to 20. It has taken almost 3 months to get back on track here. The vet thought she looked terrific (except for the bleeding). A side note here: several years ago in her youth, Chloe would get bloody diarrhea after being in the show ring. She hated to show so we stopped. The vet thought at that time she might have IBD. After she was no longer in shows, her diarrhea never came back. One of the early treatments for IBD is prednisone anyway. On her new weight loss diet she gained 2 pounds! Has anyone had GI bleeding with a high HCT? It is truly worrisome. I haven't spoken to Dr. Dodds about the bleeding as she just got back from Italy and the holidays won't be over until Saturday night. Thanks for any input. I get her CBC and chem panel (with liver values) back in the morning. Cheri and Chloe (5 months and counting against IMHA) |
| Cheri Maryland |
| Cheri, I just want to let you know that we're sending tail wags for Chloe and her bleeding. I read the entire story - wow, the ups and down over the 5 months. I'm glad to hear she's otherwise feeling terrific! And thank you for the note about Pet Plan (after tons of research, they were the leading contender, so I think I'll go with them for sure) - after 10K in 3 days, we're heading the insurance route! Oh yes, and a note about the pumpkin in case anyone needs it in the future. There is a kind you can find in the pet store called Fruitables that has a few vitamins mixed in, but it's about twice the price of plain pumpkin. I couldn't find plain pumpkin in the grocery stores either this time of year, but Amazon has organic plain canned very reasonable and with free shipping - first result if you search "canned pumpkin" on their site. We gave it to Mikey since he was never quite "regular" due to food sensitivites and it solved the problem. |
| Jen San Francisco |
| Cheri, Tessy had this at one point but it was when her crit was much much lower. It's a much better thing to be dealing with this when the crit is higher...less risk and worry involved! The sucralfate is a very good idea. If this were me I'd fast her for at least half a day or more...give the whole digestive tract a rest. Right before doing this use sucralfate or..... in addition...I used a product called "Progut" that I got from the vet. It's a supplement that is usedto coat the intestinal mucosa...helps healing also. Google progut and you'll likely get more info. The food you do feed you might want to keep bland and mush it up into a slurry so it isn't hard. I'd assume acidy or more fatty foods might irritate more. Did you get the CBC and chem results back yet??? As always, thoughts and prayers for you and Chloe. Johnny & Tessy |
| Johnny |
| Chloe's labs are back with only a few abnormals. GGTP is down to 14 from a high of 287 in August. Chloe has been taking Ursodiol. I am waiting to hear from Dr. Dodds about when to discontinue it. HCT 41.8!!! Lipase 805 elevated Anyone know why? lymphs 1066 seems okay on 100mg cyclosporine and 2.5 mg of pred retic 22,760 no need to make more cells as hct is great platelets 478 everything else is fine glucose is 42 though-no clue why, as this dog eats plenty. Chloe gets her lap spay in 3 weeks. She is lively, lively. My son said he could barely catch her in the x-pen! The calcinosis cutis is decreasing in amounts and looks like the rest of the calcium deposits will be coming through her skin (yuck!) but it doesn't seem to hurt or itch and I keep painting her with gentian violet. No more bleeding from her gut either, thank goodness. I can't stand all the different side effects and variations she has had but I guess it has made us a stronger team. Her fur looks like it might be starting to come back too-at least the undercoat is coming in. Five months and counting. My family looks at the five months as a great gift. I have barely caught my breath though. She climbed up the stairs to my room for the first time since she got ill too. She was not happy to see the standard poodle in the room either and Chloe straightened him out fast. Nice to see she is feeling so perky! Thinking of all of you in the battle against IMHA. Stay strong and do your best. Cheri |
| Cheri Maryland |
| Cheri, Lipase is a pancreatic enzyme that is secreted into the small intestine to help us digest our food. High levels that are in the blood stream (instead of in the small intestine) can sometimes indicate inflammation of the pancreas, pancreatitis. Glucose is blood sugar and the level in the blood is controlled by insulin which is secreted by the pancreas. You can see that the pancreas provides two separate and distinct functions. Insulin should be just enough to keep the blood sugar even all day, with very few wide swings. If the body is producing too much insulin (or a diabetic injects too much after a meal) the blood sugar will be too low. While we might want to think that Chloe is experiencing pancreatitis (of dietary causes or other causes), it is well known that long term, high dose use of prednisone does negatively impact the pancreas. If she does not act as though she is in pain, (and pancreatitis is very painful), by arching her back, groaning, vomiting, refusing food etc, then perhaps this is a mild-moderate case of pancreatitis caused by the prednisone. Low blood glucose can lead to disorientation, dizziness etc. If it becomes too low, it can be considered an emergency. Remember that a little sugar given to a human who has diabetes will not harm them whether they have very high or very low sugar. If they have symptoms, and it is low blood sugar, giving a packet of sugar will be good for them. If they are actually experiencing very high blood sugar, then the little bit in the packet won't harm them. Either case, though, is an emergency and they should be seen by a doctor. While this isn't an emergency for Chloe, do talk to your vet about their take on these two numbers. I myself would want to see these number become relatively normal very soon. my best patrice |
| Patrice NYS |
| Everything Patrice said!!! I'd also recommend minimizing the fat content of the diet until you speak with the vet. Was the amylase normal? Sometimes small things like dehydration or renal problems (uti's???) can cause slightly elevated lipase levels. Tessy had levels almost near where these are (minus the low glucose) and the whole while had a UTI! So, yeah, you might want to make sure there's no kidney problems as well....just in case there's something brrewing. Anywho, good to hear she's getting better. Give some hugs for me. Johnny & Tessy |
| Johnny |
| Chloe's lipase is normal, her diet low in fat. She is currently on amoxicillin (for the GI bleeding) which should treat any possible UTI although I don't think she has one. She drinks enough water but as her prednisone has really been cut back she is not emptying the bucket. Thank goodness for that as I got tired of the outside every two hours routine because I had to come home from work throughout the day. The rest of the panel is fine. Dr. Dodds wants to stop Chloe's Ursodiol as her bile duct seems to be fine now. Still on 100 mg of cyclosporine too. How does that taper? Does it just get stopped? I have another 2+ weeks supply of 50 mg capsules. If I have to taper to 25's I have to get organized. Dr.Dodds thinks Chloe can go to 2.5 mg of prednisone every other day but I am terrified as Chloe has already relapsed once when she was in the 30's and then had a probable lung clot. I am willing to really go slow here. I will ask about a possible UTI but thought the antibiotic would zap one. Chloe doesn't appear to be in pain at all. She had pancreatitis very early on with sky high enzymes. I will add some glucose to her diet though. I bet she might like some OJ or some fruit but I have to be careful because of the GI bleeding which is resolving. The really strange thing is this calcinosis cutis which is so improved on her tail and back. The huge plates of calcium deposits have decreased over the bony prominences but appear to be ready to break through her skin in new points. These pieces are huge (several inches long) so I am not sure how this will resolve. If the pieces just trickle out like the pearl sized ones I think it will be okay keeping her skin clean and dry but if they come through like glaciers we will be in trouble. I am hoping her body will really slowly release the calcium chunks as I am not up for surgery with Chloe just gaining strength. This is the most bizarre side effect of prednisone. Chloe's energy is coming back and it is great to see her lively. I caught her playing with the standard poodle today for the first time since April! We keep saying around here that we are so lucky to have had her another 5 months. I don't mean to be greedy, but I would like to extend that to another 8 years or so! Thank you Johnny and Patrice for your wonderful input. It is greatly appreciated. Cheri and Chloe |
| Cheri Maryland |
| Cheri, Cyclosporine does not have the same significant need to be decreased slowly that prednisone does. However, it does need to be tapered gradually. I would avoid decreasing both the prednisone and the cyclo at the same time. Pred is the far worst drug of the two as far as side effects go and it probably would be good to get this to sub clinical levels to reduce those (2-5mg daily, eod, etc). Then when you are there you can monitor the lymphocyte numbers for a few weeks and then decide if you can decrease the cyclo as well. It's clear that Chloe needs some relief from these drugs as far as side effects go. I know the skin and coat things are awful. Chance looked so bad that I felt I needed to explain to people we saw when out walking that he had been very sick and that he will look better soon. I felt a bit ashamed of myself to feel so awful about his appearance but people do evaluate dog owners level of care directly by how their dogs look. I bought a bottle of a grooming aid that show people use called The Stuff and I fluffed up his coat nicely. Try it and see if you can get the same results. It is very gentle. I saw a dog today at a Blessings of the Animals. Velvet was clearly very old and had many visible things that indicated to me that she was not long for our world. I knew why the owners had Velvet there and I felt sad, not only for how their beloved dog looked by also knowing that she would soon be gone. I knew that they probably felt that if she could just hang on longer, they wouldn't care one whit what she looked like. I think if this were me, and i have been there, I would trust Dr. Dodds about the pred reductions, it is critical to the pancreas to do so. The cyclo is doing the job you need to get done right now. Once you remove cyclo it is gone out of the system very quickly. my best patrice |
| Patrice NYS |
| Thank you for the help Patrice. It does sound like I might need the 25 mg of cyclosporine though for tapering. I will probably get Chloe down to every other day on the prednisone by next week at the latest. I actually think we own The Stuff for the coat but we also have a ton of show products we have used on our dogs. It is hard to fluff up bare skin though! Right now the bare spots look lumpy, crusty and purple. She is wearing the Ravens colors of purple and gold! Should I do the CBC every week after lowering the pred to 2.5 mg every other day? Every day Chloe looks stronger. The difference is amazing! I can hardly believe so many vets told me to put her down in April. I will let you know how it all turns out here. I trust Dr. Dodd with Chloe's life. Today I turned in 15 claims to the pet insurance- I know they want Chloe to get well. Cheri and Chloe |
| Cheri Maryland |
| Chloe's hematocrit is up to 44.6, lymphocytes 1349. She went off prednisone a week ago (she was on 2.5 mg every other day right before that) and had a lap spay on Tuesday which went well. She is still on 100 mg of cyclosporine, .6 soloxine twice a day, famotidine and lixotinic. I ran out of Denamarin this week but she is on milk thistle. How do I wean her down from her cyclosporine? Her vet said just to stop it but I feel really uncomfortable doing this. I thought she had to go to 50 mg for a while. Any suggestions? Chloe has made it to the 6 month mark! At what point can she return to a raw diet? Ever? She gained so much weight on the prednisone (17 pounds!) and I have reduced her grain free kibble by a lot and added even more veggies. Please help with your thoughts on cyclosporine. She couldn't have made it this far without the help from folks on this forum (and Dr. Dodds). Thanks. Cheri and Chloe |
| Cheri Maryland |
| Woo hoo for no more pred!!! That's great news Cheri! I'd wean the cyclo the same way you did the pred...go from 100 to 75 then 50 then 35 etc. Keep it safe right! I wouldn't think raw diet for quite some time yet...if ever. This would be a good question for Dr. Dodds! Sounds like you have a good diet going for her. Once she's healthy and off the drugs then you can worry about losing some weight. Keep up the good work. HUGS and prayers, Johnny & Tessy |
| Johnny |
| Johnny thank you so much for the quick response. Chloe is on cyclosporine modified made by TEVA. The smallest dose is 25 mg capsules so I can't figure out how to ever give less than 50 mg/day. I don't think I can freeze and cut the capsules for an accurate smaller dosage. Maybe the other dogs were on something else. Atopica? I am so happy to hear Tessy is doing well. I loved the photos. Your girl is so cute. Give her some extra kisses from Chloe and me. Cheri |
| Cheri Maryland |
| Cheri, once you get down to 25mg once daily then you could either decide to go 25mg every second day...then every third, etc. OR you could go to the vet and get 10mg caps of Atopica to go down to. With cyclosporine I'd think that using only the 25mg caps then going to an every other day schedule should be sufficient. Cyclo doesn't have to be weaned in the same manner as prednisone. Tessy says thanks for hte kisses...she never passes free kisses up!! Keep us posted. Johnny & Tessy |
| Johnny |
This thread was discussed between 06/07/2010 and 26/10/2010
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