AIHA or IMHA

    • Bronze

    willowchow

    Mike, I hope she's doing OK this morning. 

    I agree with Callie, the gum color can vary a little especially after they've been sleeping or laying down, I've noticed that too.  Also, Willow's gums were much lighter than normal when the meds were at their highest.  She had a lot of inflammation naturally and once on the meds they got much lighter. 

     

    Lori -

    You sound just like what my vet told me today.  I checked her at 2am and of course she had just been sleeping and laying down.  You have no idea how close I came to driving 4 hours.

    My Vets blood machine had gone on the fritz so he examined Cyclops and felt that she is in no danger and sent the blood work to an outside lab to confirm his machine which read 25.  He is going to call me Saturday afternoon to confirm and then fax the results to the teaching hospital so everyone is on the same page.

     

    willowchow

    I also wanted to mention that I do agree with you I think they took the Prednisone down way too fast.  I mentioned that when you first posted that on page 6, I think.  There are plenty of ways to support the liver thru this and liver issues with these drugs are to be expected.  So, not sure why they are freaking out so much over it.  Willow was on antibiotics she had so much liver inflammation and also Denosyl and Marin and milk thistle.  But, once the Prednisone was stopped, the values returned to normal and rather quickly. 

     

    My vet also thinks that the teaching hospital was worrying way too much about the liver.  My dog was on 2mg/kg/day split so about 30mg twice a day.  Now she is at 15mg once a day. She has been at 15mg once a day since Monday.  Assuming that her PCV is steady at 25 then I think my plan is not to increase it but also not to follow instructions and decrease it yet.  My instructions are to go to 15mg eod starting today and then discontinue the pred altogether a week from now.  I think I will continue at 15mg per day until next Friday and then see what the CBC says and maybe decrease 5mg or start every other day at that point.  I am no doctor but I sense a difference of opinion between the hospital and my vet and so I get the feeling there is some wiggle room. 

    After all its suppose to take 2 weeks for the cyclosporine to build up and take over.  She's already at 1/4 of the pred she was on at the time I took her to the hospital.  Maybe I'm just overly cautious but I don't see any harm in stretching out the taper down process a little.  If I am wrong please someone jump in and tell me.

    Lori I saw some of your posts about Willow on another site.  You were helping someone decide if they should give ultra low dose aspirin.  I'm not sure what you did with your dog?  Blood clots are just another thing for me to worry about.  I have been giving Cyclops 1/4 of a baby aspirin (20mg) a day.  I started this before she went to the hospital with approval from my vet.  Her discharge orders did not mention any aspirin but I put her back on it.  Maybe its just a placebo for me.  

    Lori.. thanks for all you do - you're greatly appreciated.

    • Bronze

    I'm not taking anything lightly - I am really just on pins and needles.  You and Shanny sound like me and Cyclops right now.  As you can see I had a couple of freak out posts after you posted. 

    I've come to accept that a sudden blod clot or ruptured GI tract or anything can take Cloppy away from me at any moment.  All we can do is do our best and hope for the best.  I've lost dogs before but nothing like this.  

    I'm really glad you still have dogs in your life.  You know. dogs are just bundles of love and Shanny would want you to go on and be happy.  Cyclops knows I'm doing everything I can and she is just so casual about it all.  Like nothing is wrong.  I'm sure she'll be like that until the end.  Dogs are so different about death than humans are.  They really make the most of the short time they have here don't they?  This disease sure makes you stop and appreciate every moment.

     

    • Bronze

    Andy'sMom

    I have been thinking about Cyclops all day, and hope that some good news comes your way. 

     

    I am not sure how I should have entered this, it is the first time I have joined a group, and hope I haven't broken any rules - if I have I apologise...

     

     

    Hi Andy'sMom.  - Thanks for the well wishes and good thoughts for Cyclops.  You know what I jumped in this thread in the heat of the moment myself and I am glad you did too.  This seems to be a really special group of people and dogs we have in this tread.  I also apologized to the person who started the thread..I am still wondering what happened to their dog - hope they come back and post.  

    Can I ask how much does Andy weigh?  Would help me understand your pred dosages.  Sounds like our dogs went through a lot of the same things.  Bone marrow and all.  Cyclops did not reject any of her transfusions though.  Also can you tell me anything about Andys liver functions on the azathiaprine?  I am still wondering if we should have stayed on that.  But I tell you what if the meds she is on now will work for her I won't argue with it.  

     

    • Gold Top Dog

    Hey Mike, you know I don't have any medical advice but just popping in to tell you I am so glad Cloppy (how cute is that) is still hanging in there.  We all appreciate you keeping us updated with good news and bad.  I think about all the dogs and the people who love them who post here and am sending healing thoughts to all of you.  Hang in there.

    • Gold Top Dog

    JackieG

    Hey Mike, you know I don't have any medical advice but just popping in to tell you I am so glad Cloppy (how cute is that) is still hanging in there.  We all appreciate you keeping us updated with good news and bad.  I think about all the dogs and the people who love them who post here and am sending healing thoughts to all of you.  Hang in there.

     

     

      Couldn't have said it better; hang in there everyone.

    holly; I hope Lily is doing okay. It seems that you had perfect timing in starting this thread; it has helped so many others;{{{{{{{{{hugs}}}}}}}}}

    • Gold Top Dog

    jessies_mom
    It seems that you had perfect timing in starting this thread; it has helped so many others

    I asked Kate if she could sticky it so if anyone was searching for info on this illness it could be easily found--and they did--so thanks for that Kate and Gina! 

     

     

    • Gold Top Dog

    GratefulDawg

    I've come to accept that a sudden blod clot or ruptured GI tract or anything can take Cloppy away from me at any moment.  All we can do is do our best and hope for the best.  I've lost dogs before but nothing like this.  

    Yeah -- they totally scare you to death with that talk about "whirlpools" in the blood from the cyclosporine and keeping them COMPLETELY quiet, etc.  I am ***SOOO*** glad to hear you verbalize this -- I honestly think this is one of the *MOST* helpful things about posts like this.  Helping people understand feeling like this is 100% normal and expected. 

    I've been thru a ton of different dog diseases, and lost heartbreaking situations before -- but I tell ya -- I felt for WEEKS like I couldn't win.  Every time we got "good news" dang, but it would turn out to be NOT good ... and every time we got news that sounded 'bad' ... by golly it would be good.  I felt like I had no judgment and no sense!  It felt like we couldn't even keep our breath half the time.  But it does get easier. Truly it does.  EVENTUALLY.

    She is responding FAR better than Billy did.  And that is just awesome.  Obviously you are doing a TON right!!

    • Gold Top Dog

    I am thinking of all dogs on this thread--those still hanging in here, those lost.    I have said before, I say again---until you have faced this disease or one like it, you have no ida othe ups and down, the roller coaster it can be.  Hopeone day, dispair the next.  And once you hae seen it, you will always live in fear or it.

     I also have lst dogs to many things.  I lost two way back in ae 50's earlearly 60's to distemper, despite having had vax...both English Setters.  I lost one to poison....English Setter   I have lost two to heartt attacks,(golden retrievers) two to cancer (one golden, one Irish Setter)  one to a spinal infection (?) that antibicotics did not work on (Irish Setter),old age clamed some.  But AIHA strikes fear in me.  

     

    • Gold Top Dog

     

    WHEN I FIRST LOST HUNTER I SPENT HOURS A DAY POTSING HIS STORY ON ALL KINDS OF FORUMS, WARNING OF PROHEART6.  I WAS ASKED TO COME TO DIFFERENT FORUMS AND ENDED UP ON MANY GOLDEN RETRIEVER FORUMS,  ALL BREED FORUMS HERE AND EVEN A POODLE FLRUM IN AUSTRALIA, A LAB AND A GOLDEN FORUM IN CANADA.  I ALWAYS SAT TEARS STREAMING AS I GAVE GRAFFIC DESCRIPTION OF HUNTER'S 8 DAYS, ESPECIALLY THAT LAST DAY.

    THEN ONE DAY I DECIDED TO TELL HOW HE LIVED INSTEAD O HOW HE DIED.  ONE OF THE GUYS ON ONE GOLDEN  FORUM WANTED TO US EMY POST TO DO A TRIBUTE TO HUNTER ON A SITE HE HAS AND ASKED FOR PICTURES---IF IT WAS OKAY.  THE FOLLOWING IS THE SITE AND I WOULD LOVE FOR YOU TO CHECK OUT AND SEE AND READ ABOUT MY HEART DOG, LOST TO THIS HORIBLE DISEASE ON oCT. 16, 2003

    .http://www.mikeandjordan.com/hunter.htm

    • Gold Top Dog

    GratefulDawg
    You have no idea how close I came to driving 4 hours.

    Unfortunately, yes I do.

    GratefulDawg
    You were helping someone decide if they should give ultra low dose aspirin.  I'm not sure what you did with your dog?  Blood clots are just another thing for me to worry about.  I have been giving Cyclops 1/4 of a baby aspirin (20mg) a day.  I started this before she went to the hospital with approval from my vet.  Her discharge orders did not mention any aspirin but I put her back on it.  Maybe its just a placebo for me.  

    Mike, I was told to stay away from aspirin and aspirin products.  I was told for two reasons--and one of these doesn't necessarily effect you--but the Prednisone can cause GI bleeding which I'm sure you know aspirin can too--and if you combine the two you could make that situation more likely and/or worse if it happens.  The other part of this for Willow was that her issue was low platelets and not red blood cells.  And, platelets are what causes the blood to clot.  So, she could of bleed internally without any medications to begin with and they didn't want her on anything that might cause that other than the Prednisone--which we had no choice. 

    Again, I'm certainly not a vet, but from what I've been reading, the view on the aspirin in IMHA dogs is changing for some vets.  I've heard the same thing I was told because, like I said, the Prednisone can cause bleeding and then combining that with the aspirin just makes the situation worse.  But, I've also heard other places what you are saying that they are recommending a low dose to help with blood clots.  So, in that case, my opinion, I'd do what I felt would be more life threatening.  For you, it may be the possibility of a blood clot, for me, it was bleeding. 

    I'd definately run it by your regular vet though. 

    Hope Cloppy(I also love that nickname) is feeling good.

    Lori

    Mike-Also, just as an aside--Willow started at 80mg of Predisone a day.  Every two weeks, they'd check her blood and then tell me to reduce her.  It took us 5 months to come off of it.  They reduced it something like this--80mg of Prednisone--she had 40mg AM, 40mg PM.  And, every two weeks after her blood test they would reduce it by 10mg.  If she was tested and they felt her blood work was borderline, they'd hold her at the same dose for another two weeks. When we got to the point were she was on 10mg, they had me give it to her every other day for two weeks, retest and then they stopped. 

    But, this was the only medication she was on, so maybe your wean off can be faster due to the other medications. 

    • Bronze

     

    JackieG

    Hey Mike, you know I don't have any medical advice but just popping in to tell you I am so glad Cloppy (how cute is that) is still hanging in there. 

     Jackie I wonder how many of us have several names for our dogs?  Cyclops has become her "formal" name and most of the time I call her Cloppy but my wife calls her "Clopsie" and she answers to all sorts of variations like "Clop" "Clops" and "Clopper".  She seems to like them all.  

    Jackie I hope one day I can be as supportive to someone going through this as you have been to me. 

    • Bronze

    willowchow

    I'd definately run it by your regular vet though.

     

     

    I did run it past him and he approved the ultra low dose.  But that is the crazy thing about this disease - no one seems to know for sure.  There is also talk about Heparin but if you were worried about bleeding that would be just as bad.  I am only worried about blood clots because of reading the statistics about what autopsies are showing on IMHA dogs.  Clotting and necrosis of organs or Thrombosis in the lungs.  

    But as you point out there is also a lot of talk about damage to the GI tract - dogs dying of ruptures or ulcerations in the intestines and aspirin certainly wouldn't help that much.

    From what I've read most vets are stumped on what it is about the IMHA that is causing so many dogs to die of Thrombosis or Embolisms.  

    If I call OSU and ask about the aspirin and they say no then I'd have 2 vets with different opinions.  Just like I have 2 vets with differing opinions on how fast to taper off the pred.  

    Most of me feels like "I am no vet and I don't have any business deciding to keep her on Pred and not follow the schedule given to me" I just "feel" like its the wrong thing to do and that I should wait until we seem more improvement in the PVC before tapering down any more.  Right now we've been holding steady which is great.  A lot better than going down.  But we haven't gone up in a while either.  

    I think that if the main danger of aspirin is the interaction with the pred then maybe I should stop the aspirin until we have stopped the pred and are on cyclosporine only.  Just hope she dosen't die of a clot in the meantime?  I really don't know what I am doing and I'm just thinking out loud here.    But you're right it would be just my luck if I'm worried about clotting and the opposite happens. 

     

    • Gold Top Dog

    Mike, with this you've just got to treat what needs to be treated and protect the liver and stomach and kidneys as much as possible while you do it. 

    Willow took Denosyl, Marin and Pepside daily with her Prednisone.  And, I also gave her extra milk thistle--double the human dose.

    I'd question the Prednisone wean off process because like I said, maybe it's the other drugs that are changing this for Cloppy and making it much quicker than it was for us.  They are all unique situations so just because one of us did something doesn't make it right for her. 

    But, I strongly urge you NOT to do it on your own.  You could cause a relapse.  I was told that very clearly by my vet--that I needed to follow her instructions to a T. 

     

    • Gold Top Dog

    I'll try to answer as much as I see here:

    Aspirin -- NO WAY!  aspirin is a "non-steroidal anti-inflammatory drug".  That IS what it is for.  Cloppy is on **BOTH** pred and cyclosporine -- BOTH are anti-inflammatory drugs -- either pure steroid or a steroid-like drug. 

    It's an over-doseage you **don't** need.  And the **Huge** risk to it is the gastric bleeding.  Because pred **and** cyclosporine can ALSO cause gastric bleeding -- particularly the prednisone -- and frankly anywhere you have bleeding you have the potential for clot formation!!  That's exactly what you don't want.  Further thinning the blood is not what you want to do. 

    Stomach protecting you really have to **protect** the stomach, not annoy it.  All these drugs are sooo hard on the stomach and you can quickly wind up with a dog with ulcers and that's another whole treatment.  We wound up having to use Prilosec with Billy (another pricey drug because we had to give him TWO a day and not one).  Tagament, Zantac, Pepsid -- they're all used to help the stomach. 

    General stroke/embolism risk -- I addressed this in the email I sent you too but I'll put it here as well.

    It's NOT just the risk of the clot.  It's a more complicated problem than that.  Cyclosporine (and to a greater or lesser degree ALL the steroids and steroid-like drugs) causes disturbances in the flow of blood in the veins/arteries.  It's almost like little whirlpools or eddys where the blood stops moving straight thru a blood vessel but rather dances around a bit.

    That can be where the clot forms -- but the problem is really the disturbance in the blood flow. 

    THAT is probably the biggest reason I keep harping on the TCVM.  **SO MANY** of these things are all prevented and dealt with BY the TCVM.  That's why I keep saying that it **augments** the other drugs.  It makes them work better and safer. 

    One of the Chinese herbs Dr. Baker will use is a 'blood mover' -- it will help regulate the flow of blood rather than letting it slow down or speed up in places.  That's a Chinese medicine thing.  Blood flow is a BIG deal in Chinese medicine -- it's part of their whole theory of health. 

    Activity level -- I know you're concerned that she isn't getting enough exercise -- but you gotta keep her super sedentary right now.  It's not like she's not getting up and down -- very very very VERY gentle sedate slow walks are ok.  but you don't want her getting excited.  Literally -- you want to avoid the walk where she'll get over-excited over a squirrel or tresspassers.  You don't want to *stir up* the blood.

    Literally you don't want to increase blood pressure to force any potential or small clots to move fast.  You just want things to move slow and easy. 

    Food -- you may want to re-evaluate what you feed her right now.  I would not feed a high-protein kibble.  AT the very least, cut down the protein ratio with veggies -- cooked mashed-to-a-pulp veggies.  Things like kale, broccoli, sweet potato, squashes, white potato -- I can give you guys some easy instructions on food (you'll want to add beef heart and whitefish to her diet ANYWAY and veggies are an awesome way to build the blood).  You can add some of this to the other dog's food and avoid jealousy -- both will benefit.

    But if you reduce the overall protein intake she won't be so antsy.  It should help take the edge off things.

    Prednisone -- I understand both ways of looking at it.  There comes a point in this when you are just plain terrified of **EVERYTHING**.  But the cyclosporine is SUCH a major major immune-suppressant that they are banking on that "catching" any bobble in the immune system because of the reduction in pred being so fast. 

    Remember the *purpose* of these drugs is to **suppress immunity**.  That's the whole reason for giving them.  The azathiaprine and cyclosporine are "bigger" than prednisone.  But the pred was 'first' so the body is dependant on it.  However -- in the vast realm of all of this, Cloppy has *not* been on pred that long.  So the body's dependance isn't as great as say Billy's was (he was on it 7 months) and Willow's (she's been on it that long as well). 

    But Willow isn't on other immune-suppressors -- so her wean-off **HAS** to be slow to re-train the body.  Billy's *had* to be slow because we had such a hard time getting his body to stop killing the blood (it took SIX WEEKS for Billy ... 6 weeks on cyclosporine at a max dose ... before the body stopped killing blood.  He'd been on pred for weeks prior to that.

    They can't reduce the cyclosporine until she's off the pred.  That's another reason for wanting her off the prednisone.

    Mike - you haven't even BEGUN to deal with side-effects YET.  That's such a major part of this -- that's one of the reasons why I keep harping on the TCVM and it's one of the reasons why the vets are trying to get her off the pred.  Just because it increases all the potential side-effects that you'll have to deal with.

    Get into Dr. Baker a.s.a.p.  He'll be back tomorrow and he should have some GOOD ideas (because he's known he may be treating her since he's been up in Reddick).

    There IS a lot of differing medical opinion here and it's not the difference between  "regular" and "holistic" medicine.  I think every single vet/doctor I've ever known have EACH had their own particular wean-off protocol for prednisone and many times SEVERAL to use in case of the million different reasons for using pred. 

    I think you'll see what I mean once you talk to Dr. Baker. 

    Good luck!

    • Gold Top Dog

    I just wanted to chime in and say Willow did almost nothing as far as exercise from July until just recently I started working up to 20-30 min walks.  And, we had hiked many miles together before all this.  She didn't want to play with any toys either.  And, she only recently started jumping back up on the couch.  And, she stopped jumping from the ground to the back seat of my car too and still isn't back to getting in that way. 

    Willow always eats a bland special diet so I can't comment to that.  But, I think the pancreas(sp?) is a concern during this time so less fat the better?? 

    How is Clopsie today?? 

    Lori