Hi Jess -- as long as it is, and as time-consuming as it will be PLEASE PLEASE PLEASE read all ... what 50 odd pages of this thread. People like Gratefuldawg, Val, me and Willow and others have TRIED really hard to talk about all you're asking and more. You will see MANY things that we can't even begin to bring back up and discuss with you -- none of us are unwilling to discuss them again, BUT I can promise you that not only will you find the discussions enlightening, one of the BEST parts is after someone "asks" and gets and answer and then they put that thing into ACTION, they'll talk about it and discuss it.
Things like what blood panels to get, and why, and what things to request be tested ... yeah, you DO have to be your dog's advocate in a great bit huge ENORMOUS way for this.
By way of introduction, my Billy (the cocker in my signature) had IMHA 3 years ago -- and on July 4, 2006 we raced him AGAIN up to the U of FL at Gainesville for his SIXTH -- yes, count them ***SIX*** -- transfusion. In the course of a month his body just was not getting with the program. Billy has survived -- not just survived but he thrives. I use not only regular veterinary medicine for him (no you don't need an IMHA specialist -- but you DO need to seek the counsel of every vet you can find who will back your plays and be informed) but also TCVM (traditional Chinese veterinary medicine) which is acupuncture/Chinese herbals which helped enormously with his recovery.
Now ... let me attack some of your questions:
izzywieds
1) what do most of you do in terms of immunizations? with izzy, we never figured out why she had the IMHA (which seems to be pretty normal) but a few people suggested that immunizations may have caused it. do any of you do titers? the vet here was really agreeable to this, thank goodness, but i just wondered if that was normal for IMHA dogs.
No more vaccines for Billy, not ever. Yes, we routinely titer for distemper and parvo (I always do -- Billy had tons of vax before we adopted him 5 years ago but not after) but NOW we titer for rabies as well and my vet interfaces with the State/County to get a waiver so I can get Billy licensed without a rabies shot. (the only place in the US you can get a rabies titer is thru Kansas State, incidentally)
yes, vaccines are one of many known triggers for IMHA. ANY chemical can act as a toxic trigger and so can some medicines like antibiotics (sulfa is probably one of the tops on the list but there are many others). Even things like flea preps like Advantage, Frontline, Revolution, BioSpot; or toxins in the environment (fertilizers, etc.); extreme stress can do it as well In Billy's case it was none of the above -- but he was bitten by a "sick tick" and his body formed antibiodies to that tick disease. BUT cockers tend to be a bit hardwired for things like cancer and IMHA and once his body formed "antibodies" the body then generalized and continued to see even the antibodies as "invaders" and kept killing those and generalized further to ALL red blood cells.
Let me say it this way -- YES vaccines are way way up there on the list of known triggers, but they aren't by any stretch the ONLY ones.
izzywieds
2) what kinds of things should i watch for or be careful of now that she is doing better? i am terrified she will relapse. every day i check her gums, and since i'm a grad student i am home a lot so she is with me most of the day, but i don't know if i should be looking for specific things.
This is where the other 49 odd pages of this thread will help you. Because stuff like "what to watch for" is discussed ad nauseum, to be honest. The list is exhaustive and ... frankly ... exhausTING.
1. You watch for relapse -- every minute of every day FOREVER after. Yes, Billy's survived 3 years ... I don't ever say he's 'cured" -- he's not. He won't ever be. He's doing well. He's doing great ... but I never relax my guard. No vax. No chemicals that I"m not 100% sure of. But I also have to weigh things carefully -- it's a heinous year for fleas in Florida -- and I've had to use more flea junk THIS year than any year in like 14 years here -- BUT I can't allow Billy to be inundated by fleas and risk THAT stress either. It's all a judgement call.
But just general nuts and bolts of things like checking their gums (sometimes obsessively and what to do when your own dog refuses to allow that?), little behaviors you may want to check that identifies YOUR dog's own health and things that might signal them not feeling well, and generally keeping them very very sedentary -- because all the steroid like drugs (and cyclo in particular) can actually cause little whirlpools in the blood that can set them up for pulmonary embolisms. It's scarey stuff but they can die of a stroke while they are 'surviving' the IMHA. So keeping the dog happy but not excited is kind of an impossible task that's set before you.
2. You watch for side effects from the meds -- is Izzy taking more than just prednisone?? (I would assume so if he's had THREE transfusions). Cyclosporine and azathiaprene are typical. They -- ALL THREE DRUGS -- have heinous side effects (yeah pred can cause mood swings out the ying yang - it can also trigger renal failure and liver failure).
In short these drugs are all very very difficult. The drugs themselves are FULL of horrible side effects long term. So one of the things you will find in the previous 49 pages are things like HOW to protect the body (milk thistle - a/k/a silymarin -- and Sam-e; or Marin and Denosyl - whatever you prefer and can afford); what sorts of side effects are typical with which drug; protecting the **stomach** (Pepcid, Prilosec and others and beyond); what sorts of foods to avoid that may inhibit the absorption of the drugs (i.e., you want to maximize the drugs so they don't have to take MORE of the drug than absolutely necessary).
How to cope with side effects you can't get away from (skin problems, urinary tract infections, mood swings, lack of appetite -- which is a big huge hairy deal because they GOTTA eat to be able to tolerate the meds).
3. Alternative therapies -- things like TCVM, and homotoxicology that can increase survival rate. But also alternative VETS and how to enlist help. People like Dr. Jean Dodds at Hemopet.com (who will consult endlessly with vets and who is widely recognized as both an IMHA authority -- and incidentally she is VERY well known and well respected at Michigan State -- she was the one who set up their endocrinology lab and set Michigan up as "cutting-edge" in that department.
4. Another thing you'll find is HOW TO AFFORD IT. This is one heck of an expensive disease for your dog to have. But a lot of us have found ways of coping, cutting corners and even helping each other. Things like the best/cheapest place to buy milk thistle in bulk and Gratefuldawg and Val are rapidly becoming experts in cyclosporine from compounding pharmacies rather than using the pricey "Atopica" - but there IS a trick to it and things to demand (I think it's the 'modified' form rather than unmodified -- but like I said Gratefuldawg and Val are the authorities there).
5. Coping mechanisms -- everything from how to get them to take pills when they've decided "No, don't want ANY more" and all the tips of what to use, and training techniques and new things to try.
7. We support each other -- this is a difficult disease on many levels. It can be financially exhausting, and mentally and emotionally exhausting for the humans. The care level is enormous -- just the fact that we wind up obsessing about what TIME the meds are given -- and sometimes feeling like you just plain aren't ever gonna make it another day. The support we've been able to give each other is tremendous.
Back when Billy had IMHA I was pretty much alone here -- a couple of other people (Sandra Slayton who has been a long-time friend of mine online from other messageboards) had LOST her Hunter to IMHA (then known as AIHA - or auto-immune hemolytic anemia) so when Billy was first diagnosed my FIRST thot was "OMG that's what Hunter had - NOOOOOOOOOOOOOOOOOO I don't WANT this!!!";)
If I recall correctly Janet_Rose has found the link to the archives of what *I* posted back when Billy was diagnosed (the Dog.com board went thru a mega upgrade over a year ago and a lot of posts were lost, but I think she' linked to them). But what we've really tried to do in these 50 pages is to document this for people like you specifically so you could learn from our experiences.
Because the subject is so darned deep.
Frankly? If it were me doing it all over again, I'd tell you to PRINT each one of those 50 pages. I'd tell you to read them and mark them up and then ASK (even if you'd rather just email us) all the questions you want.
You have our support and not only our collective knowledge but you've got the help of any one of us. You'll read above about people like Slr2meg, Graniasbard, Willow who have dogs who have survived IMHA and other similar auto-immune type disease. You'll also unfortunately see stories of other dogs who didn't make it -- but you'll also see the things they didn't see quick enough.
This can be such a fast -- LIGHTNING FAST -- disease to take a downward turn. It can be SO easy for a side-effect to be discounted or ... dare I say "ignored". Things like if your dog starts getting even reluctant to eat -- ACT NOW *****RIGHT AWAY*****. Don't wait for several days to pass -- VET **NOW**. Bloodpanel ... NOW. Don't let them say to you "Well, let's see how he is on Friday." NO -- don't let it happen if you have to race to Michigan State and take him in the middle of the night.
Because it's like I said -- other things can masquerade -- liver failure and renal failure, or even diabetes can happen SO fast. Often even the most experienced vet is no substitute for YOUR gut. You know Izzy better than anyone. And if this is just plain not like Izzy to refuse this food or be letharic or whatever "thing" you are seeing today that is weird -- the thing this disease has taught ALL of us is not wait. ACT.
You know what? You could read this post of mine and get scared and I don't want you to be. But if there is one overhwelming thing we've all learned it's to be our dog's advocate. To stick up for them and say "But WHY did you choose ABC Dr.____?? Can you explain to me why you say use this instead of that? What if ....________________???" You have to be nice, but you also have to be firm (and that's a tough line to walk).
I'll be honest with you -- the one thing you've said that scares the living daylights out of ME is that your vet didn't automatically say "NO WAY -- NO MORE VACCINES ***EVER***!!!" It's a foregone conclusion to be honest -- even if vax weren't what triggered it initially (like with Billy) -- it's STILL universally held NO VAX!!"
(sorry, not yelling at you -- but I can't sit here and look at my boy who IS still living and breathing and not feel pretty passionate about all we've gone thru!!)
Take a look at http://www.hemopet.com -- Dr. Dodds has a number of things you can print out and hand TO your vet. And your vet SHOULD know who she is. (and Dr. Dodds is awesome -- she will email YOU, not just talk to your vet. She's an awesome lady and has helped a number of us.)
I'm gonna stop here. But please -- take your time and peruse those pages. You may want to simply make notes of what page to go back and look at later. But they'll help you.
And -- if you look across from any of our names at the top of each post -- over on the far right is a button "Contact" -- that will get you a drop down list that includes an email option or a PM -- but that will get you to us individually and sometimes that may be easier.
*hugs* and WELCOME. (and did anyone say WE LOVE PICTURES????)