| Just come back from vets - Phoebe's PCV - Pack Cell volume is up to 25.7 which is the good news. The bad news is that her cells are not regenerating in her bone marrow - vet says she will never be cured and it is just a case of giving her quality of life. As mentioned before she is taking Atopica and Pred - can anyone tell me if their pet has made any sort of recovery from non-regenerative cells in the bone marrow - or if anyone knows of any treatment? Vet says that most IMHA cases of non-regenerative cells are in the blood and phoebe's case is quite rare - in fact she has never seen it - so worried now - just when I thought we were making progress yet another kick in the teeth!! Kind Regards Gill & Phoebe |
| gill uk |
| Gill, many of the dogs from this forum has had the non-regenerative form of AMHA. Dogs CAN AND DO recover from this type....just takes a little more time, work and determination. The thing I find odd is the fact that Phoebe's PCV is slowly climbing. Did you get a copy of the results? If not that should be your next step. Get copies of the results at each visit. That way if you are looking up info you can flip back to look for trends. It would also be good for answering any questions that you or others may have. Do you know if they did a reticulocyte count? These numbers would be indicative of regenerative/non-regenerative anemias. You could also look at the "M" values on the results to see the various sizes of the RBC. This could tell you if the body is producing RBC's. I'm sorry but I just don't know a whole lot on the non-regenerative type of anemia. There are others here that know WAAYYYYY more than I do and have been through this specific type of AMHA and I'm sure they will be able to enlighten you more. Hang in there and be strong. Things seem like they are getting better for you. I'll keep Phoebe in my thoughts and prayers. Give her hugs from Tessy & I. Johnny & Tessy |
| Johnny |
| Thanks Johnny & Tessy Just when I am starting to lose faith and hope someone sends a message like this!! This makes me even more determined to fight - I will ask for copies of her blood tests to date and compare them - maybe I can then put the results on the posts for someone with more knowledge to translate. I guess my vet hasn't ever had a patient with this type of non-regenerative IMHA in bone marrow and therefore is dubious about any results I may find on the internet!! Thank you so much for the uplifting message - it really does mean a lot. Kind regards Gill & Phoebe PS what are RBC's and what is the 'M' value? sorry to appear so ignorant but this really is new to me!! |
| gill uk |
| Wow, I would suggest seeing another vet, call and find someone with expierence with this disease. As Johnny said, there are many dogs here diagnosed with non regen AIHA/IMHA and are living long healthful lives. Hopefully Patrice will see this, she is awesome and understands so much and can explain some of Johnnys ?. She also has a non regen survivor of like 5 years. Do a search on non regenerative IAHA/IMHA here and you will find lots of good ingo and positive stories and just put in Patrice and hopefully you will find many good posts. Good luck Laurie and Wylie |
| Laurie CA |
| Hi Laurie & Wylie thanks for that - have had advice from Patrice in previous posts - she is very good! I can't really blame my vet as she has never had a dog with this condition and even she says she is out of her depth but her early referral to Royal Dick in Edinburgh really (I think) saved Phoebe's life. She has just rang me to say that she has spoken to the consultant vet at Royal Dick has reiterated what both you and johnny have said (I guess she has seen quite a few cases of IMHA) and that it is early days and at least Phoebe's PCV is climbing - albeit slowly - but I can comfort myself that it is at least going in the right direction. I shall be forever indebted for the advice I have received from this forum - and thank goodness I stumbled across it - it too has helped phoebe and saved my sanity!! kind regards Gill & Phoebe |
| gill uk |
| Hi Gill, Maybe non-regenerative anaemia is not so common here in the UK as it is in the US? I don't think that our own vet has any direct experience of it - or trying to treat it, at any rate - and at the teaching hospital that our girl attended, they apparently only expect to see a couple of cases a year. We've had some good news and some not so good news lately. Pip was diagnosed as non-regenerative and started treatment at the beginning of April (Pred only). Finally, at the beginning of June, she showed new reticulocytes (after being on Atopica and Deca-Durabolin as well for a couple of weeks) with a higher PCV. Her most recent test a few days ago was disappointing, though, as her PCV had dropped so we take things from there. P.S. Like you, I've found this forum a God-send and have been "lurking" since we first realised that our girl had a problem. There are sad tales of dogs who don't make it, but there are also fantastic ones of where they do. Keep strong! |
| Kit UK |
| Gill, If you have not read the Success Stories at the Meisha's Hope AIHA/IMHA Web site: http://www.cloudnet.com/~jdickson/successstories.htm as yet, you might want to do so when you can. Two stories that might be of real interest to you are Macy the May 2006 Story as well as Kobi the October 2006 Story. Dogs who appear to be non regeneative CAN and DO many times start to regenerate new red blood cells and start on the path to recovery but it can take a longer time. Hang in there and stay strong. |
| Joanne MN |
| Gill, I wish I had more time right now, but I am just about out the door. Find another specialist as soon as you can. Get a copy of all the lab work from your vet before you go (leave). Be polite and thank your vet very much for their help, there is no need to burn your bridges, but explain you would like a second opinion. Dogs with non regenerative anemia do have a harder time than dogs with autoimmune hemolytic anemia, but they also have more time and they don't have those sudden hematocrit drops below 15. You need a specialist who understands that autoimmune disease can reach to the blood cell precursor cells in the bone marrow and one who can give safe transfusions. You may need more than one transfusion. Has a bone marrow biopsy been done? Please try to get the lab results to post here if so. Chance had very severe non regenerative anemia. It was a long recovery, but he's right here next to me now, making blood and looking like a million bucks. Do not give up with just one vet's opinion. There is great hope. patrice |
| Patrice NYS |
| Hi Patrice Thank you for your comment - can't leave vet as only transferred to her after leaving another vet who let us down badly when we lost our beloved Macauley to cancer in May 2008. She is a lovely lady who is doing everything in her power to deal with a situation that she doesn't know much about (in fact I think any vet in the area where I live would know much about this condition), however, I am going to contact a homeopathic vet who we have dealt with inthe past to see if he can throw some light on the matter. the other reason that I don't want to leave her is that she knows one of the best consultants at the Royal Dick in Edinburgh Scotland who she liaises with regularly on Phoebe's condition. she has rang me this afternoon and apologised for her 'opinion' this morning after speaking to the specialist at Royal Dick. they are going to keep Phoebe on the Atopica & Pred for the foreseeable future (can you tell me why some dogs are on aspirin?) as the consultant thinks that Phoebe is heading in the right direction. We are about 3 hours away from Edinburgh - if she needed a transfusion would this be time enough to get her there or should I speak to my vet regarding cross-matching and blood donors now in case she needs a transfusion in future. I am soooooo pleased that you have a success story - it gives me something to hang onto - I know that many people admire you and the journey you have been on - maybe someday I'll be able to help someone too!! Kind regards gill & phoebe |
| gill uk |
| Hi Joanne thanks for your words of comfort - it really does help to know that there are some success stories - I'll try to look forward and gain my strength from the support here!! kind regards gill & phoebe |
| gill uk |
| Gill, Ok, it sounds like your vet is willing to explore her options with advice from other vets. This may be an appropriate time to contact Dr. Jean Dodds. She is a specialist in canine blood diseases and operates a not for profit center in California: www.hemopet.org I contacted Dr. Dodds in early 2007, from the advice of a good friend, about Chance's non regenerative diagnosis. The specialist I was seeing behaved similarly to yours, unsure of where to go with the treatment and not hopeful that we would have much success. Dr. Dodds immediately picked up and helped me via email advising the treatment and subsequent protocol. My local vet was excited to be working with her so I was able to continue to use their services for routine things like blood work. But my vets were very eager to do whatever they could and explored all the tricky details regarding blood transfusions. Most vets will see a dog for a one time only transfusion, most likely a result of serious blood loss from being hit by a car. Doing multiple transfusions on a dog requires skill and preparation. Having a good local vet on your side can mean the difference between being successful or not. A lot of the care needed will be good nursing care, clinical observations and subsequent treatments, medication dispensing etc. It will actually save you money. Specialty tests will need to be done at a large clinic, like the one you mention in Edinburgh. The difference between dogs that have autoimmune hemolytic anemia AIHA and those that have autoimmune non-regenerative anemia is that the destruction may be occuring in the bone marrow to the precursor cells. So red blood cells are not being made to replace the aging red blood cells in circulation. Those red blood cells in circulation age out at about 120 days. So what you will be seeing is a gradual slide of the hematocrit/PCV (packed cell volume) and the number of red blood cells in circulation will slowly decline. You are at around 25 PCV now. While this is not very high, it's also not very low either. It would be classified as moderate anemia. We saw the same slide with Chance, he was diagnosed at around a PCV of 32. In addition Chance had neutropenia, he was not making white blood cells either. This can be very dangerous because the body loses its protection from invaders like bacteria and viruses. He was at great risk of infection for several months and was on constant doses of antibiotics. Some unfortunate dogs also have thrombocytopenia as well, the bone marrow stops making platelets as well. This is extremely dangerous and those dogs are at great risk of dying within days from their inability to stop internal bleeding. I will be here over the next few months with you to help you read and understand the lab results that you will be getting. Ask for and keep a folder of all lab work, it belongs to you. Start a notebook that contains all information during the day, including meds given and times, food eaten, exercise, general condition and any lab tests that might be done that day. This will be of great help to you to keep track of medication administration. Right now you need to have the last two CBC complete blood count results. Post the following here: hematocrit HCT (or PCV), red blood cells RBC, platelets PLT, white blood cells WBC, hemoglobin HGB, reticulocytes RETIC and/or reticulocyte absolute and reticulocyte percentage RETIC %. Aspirin is given to dogs undergoing hemolytic (destruction of red blood cells) crisis who are in great danger of clotting inappropriately. This is due to the massive number of red blood cells being destroyed in circulation. Aspirin helps keep the blood from clotting. That is not happening in Phoebe as far as we know. Cyclosporine was the drug that saved Chance's life. It was in a very high dose for a relatively long period of time. It took about 2 months to be completely successful. my best patrice |
| Patrice NYS |
| Hi Patrice WOW - a lot to take in!! Thank you so much. I feel so much better after reading your message and feel positive again and ready to be as pro-active in fighting this god-damn awful disease for Phoebe sake. I will ask my vet for all Phoebe's blood results and will also contact Dr Dodds via the link which you posted. Everyone said how knowlegeable you are - and boy were they right - have you learnt all this information just thru dealing with Chance or are you actually working in the animal medical field? If the former, I am determined that I too will become a sponge - taking in and acting on all the information I can. Thank God for this website - I feel heartily sorry for people whose pets are suffering and have not discovered the support offered by all the wonderful people here. Thank you so much again and I will ring my vet on Monday and request all the information. - Am having quite a bit of trouble with my Pet Insurance - do you know of anyone else who has had to have a battle to get help with the financial side - either way - with their help or without it we will do our best for Phoebe - she deserves it! Kind Regards Gill & Phoebe |
| gill uk |
| Gill -- good luck to you and Phoebe. I am so sorry that your vet gave you that horrible opinion about Phoebe's non-regenerative anemia. Fortunately, you didn't act hastily, and she has since apologized. It says something about her that she did apologize, but it also was quite unprofessional of her to be so bluntly negative on a disease which she has never treated! I am glad that you found this website. The people here are so informed, and it's helpful to have insights from different IMHA cases. I found this after my dear beagle died from IMHA in May 2005, and I know I would have been much smarter if I'd been able to ask questions and ger reassurance here. Please take care. I'll keep you and Phoebe in my thoughts and prayers. |
| Brenda VA |
| Gill, My thoughts are always with you and you are not alone. my best patrice |
| Patrice NYS |
| Dear Brenda Thank you so much for your kind words of encouragement - and I'm so sorry for your loss - having lost Macauley to cancer last year I feel I am still in the grieving process whilst having to deal with Phoebe's illness. So it's kinda nice to know that others have been thru the same experience - and there is lots of experience to learn from on this site!! Patrice has been wonderful with her advice and I am going to contact Dr Dodds when I have Phoebe's blood results. Thank you once again Kind Regards Gill & Phoebe |
| gill uk |
| Thanks Patrice - I lit a candle at mass this morning for all the owners and animals who have been touched by this awful disease and will be putting a message in the prayer book next week so the whole congregation will be praying for everyone - you never know -maybe we'll have devine intervention and ultimately help the scientists to find a cure!! Will keep you up to date with Phoebe's progress. Took her out yesterday for the first time as she seemed bright and bushy eyed in the morning (we have a special dog buggy which she loves and everyone stops to talk to her and ask about her - she looks so cute!) and she really seemed to enjoy herself. Just taking each day as it comes. Kind regards Gill & Phoebe |
| gill uk |
| Gill- Just wanted to mention that my dog Sway was non-regenerative completely for the first 10 months of her diagnosis and then began to make cells and has hovered around 18-25% ever since... but point is, she started making cells eventually so dont let them tell u she cant be healed or whatever context they are speaking to you in- Josh |
| Josh California |
| Hello Josh, I hope Gill won't mind this small diversion to her thread but, as you're here, I was wondering if you/your vets had considered that Sway might possibly be dehydrated? It's one of those basic things that can sometimes be overlooked. Sending positive thoughts to you and your girl - she looks an absolute darling. |
| Kit UK |
| Hi Josh thank you for that - its always good to know that there are positive outcomes - and don't worry I won't ever give up on Phoebe! always in our thoughts & prayers gill and Phoebe |
| gill uk |
| Gill, I don't have much to add, other than thoughts and support for you and Phoebe. I know from reading here that a lot of dogs have done very well with non regenerative anemia- but it's scarier for you I'm sure. We'll be thinking of you, praying, and sending lots of love and positive thoughts your way. melissa and tiggs |
| melissa slc |
| Just wanted to ask Josh about Sway, if she was non regenerative for 10 months how did she survive, did she have multiple transfusions as her pcv would have kept dropping surely? I ask because I have a little darling beagle called Nollaig(pronounced null-ig and is Irish for Christmas)who was 3 there on Christmas day.Nollaig has what the internal medicine specialist at University of Glasgow vet hospital believes is pure red cell aplasia,she had a bone marrow biopsy done back in February but that proved inconclusive plus she had all sorts of scans and tests run to rule out anything else causing anaemia. I have to say he is very good and seems very knowledgeable about this disease. Nollaig has had 4 blood transfusions done now between February 16th 2009 and present day in order to save her life,last transfusion took 14 dogs to be tested before they found a match and they reckon if she needs another one they probably wouldn't find a compatible donor(the more transfusions they have the more difficult it becomes to find compatible blood.) Nollaig's pcv has never increased at all or even remained stable for longer than 2 weeks,vet says she was non regenerative to start with but is now and has been for while now poorly regenerative.Vet has tried her on firstly high dose prednisolone and azathioprine but although azathioprine helped pcv decrease slightly slower it reduced her white cell count down to dangerously low levels so she had to be taken off that,prednisolone didn't help either and he has gradually reduced that to 5mmg every other day now.She was then put on cyclosporine(100mg per day) which she still takes today but it hasn't helped either and she is within therapeutic range that this should be in her blood.Vet then spayed her as sometimes oestrogen can play apart in this disease so that was done about 4 weeks ago now but her pcv is still declining.Nollaig was then put on leflunomide just under 3 weeks ago but her white cell count again is dropping too low so dosage reduced to 40 mg from 60mg every day.Her pcv was 38% after last transfusion on 19th June and last week had dropped to 31% she is going today to get rechecked. I have to say my heart is breaking with this illness and I have tried to be positive along the way using this website to do so but vet says this is Nolliag's last chane and so far the only thing this drug is doing is reducing her white cell annd not improvinng red cell count at all. What do I do as Nollaig seems so well in herself and even when her pcv wass aas low as 8% all she was was a bit lethargic.How can I give up on her when she's not looking at me saying 'I've had enough?' Any advice gratefully received please.My husband and I have spent nearly £8,000 of money we have had to borrow to help her but it would all be worth every penny and more if she could overcome this horrible illness.I have 9 beagles and couldn't afford insurance for them all(only 2 insured) but I so wish I had had it now!! PLEASE HELP!! Kathleen |
| Kathleen Macdonald North Ayrshire |
| Hello Kathleen We have a afghan 12 years old Spencer, today he has been diagnosed with non regenerative anemia,this has been going on for 3 weeks.to date we have had 4 blood tests the last one show his rbc count is 45 2weeks ago it was 98 i am afraid we are not well informed on the tech jargon we had an ultra scan done on wednesday which showed liver heart ok but it did show an enlarged spleen.the vet has said she believes the condition is linked to bone marrow / lymph nodes.he has had an injection of b12 tonight and on steroids,what seems confusing is he still has a huge appitite but is losing a huge ammount of weight,which makes surgery on the spleen very risky.I do hope you get positive results for Nollaig soon. best regards Alan |
| alan somerset |
| Can anyone offer any advice? I am desperately worried about my 5 year old lurcher girl who is seriously ill. She was diagnosed with non-regenerative anemia (AIHA) yesterday and is having her bone marrow tested today and we should have the results in about 1 wk. Her blood tests last week showed that her pcv is 18, her white blood count is slightly on the low side, protein - slightly low, and calcium slightly raised. It would seem that the condition came on gradually, which I believe is slightly better than sudden onset. And I feel hellishly guilty for not recognising the symptoms sooner. Rather than await the bone marrow results the vet thinks it's best to start her on steroids tomorrow to give her the best possible chance of surviving. He mentioned the name prednisolone and could any one confirm whether this is the best line of treatment because I'm completely ignorant? I see in an earlier post that Royal Dick in Edinburgh has a good reputation for treating the condition - is this correct? because I'm prepared to travel if necessary. Please help. Many thanks, Claire |
| Claire Cumbria |
This thread was discussed between 03/07/2009 and 28/07/2009
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