Reducing pred in IMHA?

    • Silver

    Reducing pred in IMHA?

    Hi, all.  I'm really grateful to have found these forums.  I have some questions relating to my dog's IMHA and her long-term treatment.  Please bear with me; I'll give some background first (just skip down to the ** if you like!).

    Emma is a five-year-old Italian greyhound.  She's a "grazer," so I usually just put her day's worth of food (just shy of a cup of Hill's Science Diet or Iams) in her bowl in the morning and she'll nibble all day; some days, she won't eat it all, and other days she'll eat every bite and want more.  Because of this, I didn't realize at first that she wasn't eating as well as usual.  On Sunday, July 1st, I noticed that the pads of her paws weren't as pink as usual (they're usually VERY pink and soft, and so plump they almost look like they're going to burst).  On the morning of Monday the 2nd, she didn't beg me to take her out and, when I called her, she very slowly and reluctantly picked her way across the floor to me.  Instead of jumping up and down and hitting me with her paws while I tried to put on her collar and leash, she just kind of stood there.  She looked unsteady on her feet.  I knew something was wrong and called the vet to make an appointment.  Between the call and the moment we walked out the door a few minutes later, she went into her crate and threw up a lot of bright yellow bile.

    Took her in, and her PCV was 32.2.  By the time they'd hydrated her later that afternoon, it was 26 and we were on our way to the 24-hour emergency clinic with a tentative diagnosis of IMHA (her blood seemed to show signs of agglutination, though they later said it was merely clumping).  Over the course of the next seven days, she spent six of them (and six nights) in the emergency clinic, half of which was in intensive care.  She did some home with me on July 4th, when her PCV was 20 and seemed to be holding steady, but I took her back in the next day because she'd gone pale again.  She nearly collapsed in the parking lot.  Her PCV had dropped to 13 (overnight!) and hit her all-time low of 8.5 later that evening.

    Her regular vet had put her on Pred immediately, the day I took her in, and the clinic added Doxycycline and, later, Clavamox, which she finished yesterday morning, and Pepsid.  On Saturday the 7th, they added Cyclosporine.  Over the course of that first week, she had four and a half blood transfusions.  At its lowest, her reticulocyte count was 6,000 (her doc said he didn't think she would regenerate); when she finally came home on the 9th or 10th, she had a PCV of 22 or 23 and a ret count of 225,000.  She had her first "outpatient" blood test on the 13th, with a PCV of 26.6 and a ret count of 70,400.  On the 19th it was 37.1! and her ret was 83,400.  Both her vets are really pleased, and the internist says that, if she has another good report on Thursday, we'll talk about starting to reduce her Pred.

    I confess...I'm scared.  I came really close to losing her, and I know that the Cyclosporine can take four weeks or more to build up in the system; at this point, then, the Pred is doing all the heavy lifting, and I'm worried what will happen if they decrease it too soon.  I know it's best for her liver to start cutting that back, though.  Here's a list of what she's currently taking:

    Cyclosporine (Atopica) 35 mg x2
    Pepsid 5 mg x2
    Denamarin (medium) x1 (callie, I'd read your posts about milkthistle, and this is what the doc recommended, 'cos her liver levels were high--THANK YOU!)
    Doxycycline 50 mg x2
    Prednisone 10 mg x2
    (finished Clavamox 125 mg x2)

    Because she threw up the first two evenings when she was taking all her evening meds at once, I've split her medication times and am giving the Atopica and Pepsid (and, in the mornings, the Denamarin) at 6:00 and the Doxy and Pred at 8:00.  I use one bite of Hills Prescription Diet AD and put all her meds together in the one bite (except the huge Denamarin) and am feeding her a quarter cup of Hills Science Diet four times a day, plus a little yogurt and raw green beans (her vet recommended this, because Emmy put on over a pound in a week), plus an occasional dog biscuit.

    **This leads me to the following questions:

    1. I keep seeing references online to a "trough test," which will show whether or not Ems is absorbing the Cyclosporine properly.  They're doing a CBC with reticulocyte count once a week; I'm assuming the trough test must be done separately?  Would they wait the four weeks to start testing this, or is this something I should have asked about already?

    2. I asked her vet about giving plain yogurt to help her stomach, and that was okayed, but I just read a comment by callie on the boards about dairy interfering with the absorption of the Cyclosporine.  Should I discontinue this?  I'd been giving her a spoonful after the Denamarin, because it's such a large pill, and then occasionally another two spoons in the evening.

    3. She's only on 20 mg of Pred a day (one tablet, split); with such a low dosage, how much should I expect it to decrease?  Is maintaining a constant level of this as crucial as it is with the Cyclosporine? (I'm asking because I have no clue how they'd have me cut the pills; guess I'll find out!)

    4. What should I watch for, relapse-wise, if the decreased dosage isn't enough?  I don't want her to get back to where she was; is there anything other than jaundice/lethargy/anorexia to keep an eye out for?

    5. Does the medication schedule make sense?  I mean, I put the things that are supposed to be given on an empty stomach with the Pepsid, and am giving those first.  But should she be taking everything at once?

    I'm SO sorry for the length of this!  I'd appreciate any advice you can give; this is a dog whose only illness up to this point had been an ear infection, when she was about two.  So this has really rocked me (and financially, as well; I'm a teacher who keeps a credit card for emergencies...and, boy, did this qualify!).  She's doing so well right now, and I want to do everything I can to keep her that way.  Thanks.  (By the way, she had her vaccinations May 20th, and the internist seems to think this was the cause; that's at the outside of a month, but maybe some things just take longer with her--the Pred took the full five days to kick in.)
    • Gold Top Dog
    Billy at 35 pounds ultimately went to 125 mg of Atopica (given twice a day -- 75 and 50mg pills)
     
    He's finally down to 35 mg of Atopica -- after a YEAR. 
     
    Don't decrease the pred yet -- yes it's got mega side effects but you don't have the cyclosporine bearing the weight YET and it can take up to 6 weeks (Billy's didn't kick in until 6 weeks and it took us til CHRISTMAS to wean him fully off the pred).
     
    In general -- you don't decrease anything NOW.  When you do, you do it s-l-o-w-l-y -- very very slowly because you don't want to give the body any reason to 'react' to anything.  You don't want it to 'miss' the pred. 
     
    Billy is still taking a TON of milk thistle.  He gets four droppersfull of Herb Pharm milk thistle TWICE a day.  *still*.  Frankly I'd probably be telling you to add milk thistle to what your dog is already taking despite the pharmaceutical milk thistle.  But it DOES do soooooo much to helping keep the liver happy.
     
    I'm not saying it will take you all this time to wean your dog off pred -- but Billy had it soo stacked against him (buffy cockers just don't usually respond AT ALL and they are kinda hard-wired to get IMHA).
     
    Billy had SIX transfusions in a month -- and for us it was the doxycycline that pushed the IMHA into over-drive and he didn't begin to respond well at all until we took him OFF the doxy.  that was just *my* experience  -- they sometimes do doxy as a matter of course because it's so often tick-disease that causes this.  In Billy's case his body built anti-bodies TO tick disease and the body generalized from that and just kept attacking the blood.  But the presence of the antibiotic made his body continue to trigger off on the IMHA for some reason.
     
    YOu have GOT to keep your dog eating and eating well.  The dog WILL likely gain weight and frankly that is not a bad thing.  The pred will cause quite a 'belly' to develop.  That goes away later.  But keeping them eating is vital -- because they can't tolerate the drugs otherwise.
     
    Pepcid is fine -- but it's only like a 8-10 hour drug -- so they put Billy on Prilosec (which is a 24 hour drug) and then by golly they put him on THAT twice a day.  so he didn't get stomach damage (and we did battle that to a degree). 
     
    There are things you can do to mitigate the damage from the pred.  One is to increase the milk thistle (the latin name is silymarin -- which is where that one you're taking gets part of its name).  Honestly my vet told me you really can't do too much -- she told me to give Billy all he would tolerate. 
     
    Be prepared for the urinary tract problems -- that is exacerbated by the pred but it's a side effect of the Atopica (that and vomiting and diarreha).  Billy is still taking cranberry, d-mannose and Vit C.  But once we got under 50 mg of Atopica to the 35 the UTI side effect has finally diminished. 
     
    The cyclosporine test they probably won't do yet -- probably not til it's been a month.  And then we did it every month (and we did a full cbc and blood panel every month for a year and i'm still doing the blood tests every time I reduce the Atopica.)  We stopped doing the trough tests when we started weaning him off the Atopica.
     
    I wouldn't give yogurt -- at least not until several hours AFTER the Atopica. 
     
    I still give Billy his pills in braunschweiger.  A pretty hefty piece of it.  One of the risks of Atopica is stricture in the throat.  The pills can 'stick', melt and cause a sore that you DO NOT want.  So I put a couple of ;pills in a chunk of braunschweiger -- I don't want that sticking in the throat. 
     
    Billy got acupuncture (and is still getting it).  He was also on a TCVM (traditional Chinese veterinary medicine -- Chinese herbs) blood builder until his pcv was holding steady at about 45.
     
    It's all got to hold steady for a good long while before you reduce anything much -- you want to get the body "used to" ignoring the blood.  Then no shocks -- no big changes.  You watch like a hawk for any kind of inflammation or infection -- and you use the easiest drug you can.
    • Silver
    Yeah, I can't wait to talk to Emmy's internist tomorrow, because when I asked her regular vet how they might decrease the Pred, she said they'd probably just have her take the 10 mg once a day.  She's currently taking 10 mg twice a day.  So that would be...half as much.  I basically made a "!!!!!!!!!!!!!!" face.  She thinks Ems won't be on meds for all that long.  I've never heard of such a thing; has anyone else???
    • Gold Top Dog
    It's all a 'balancing' act.  Because it depends on how easily the body gives up its attack on the blood.  MOST of the vets I've spoken to prefer the initial wean-off to be ultra slow.  At least until they *know* the cyclosporine is up to a level in the body where it *will* suppress the immune system. 
     
    And then, as we discussed on the phone, usually you don't want the body to 'notice' anything.
     
    Pred is difficult -- but that's why I told you I have given Billy SOOOOOO much milk thistle.  Honestly it was the one thing I was encouraged to be extremely liberal with.
     
    But now on the other end, a year later, now we're trying to get him off the meds a little more aggressively because we're seeing the body developing negative side effects.  But it's still a 'race' and as I said SO often in those old posts -- it's a race to see if we can keep the IMHA totally at bay until we can get him weaned off all the drugs.
     
    The rebound, if it happens, can happen blindingly fast.  you know how fast she dropped to 8.5??  It can happen and you may not even see a decrease in the pinkness of her pads or gums.  If the body mounts a full scale attack it can be horrifying.  Which is why I told you to watch the behavior SOOOO closely ... and watch for any sign of stomach distress.
    • Silver
    Oh, I WANT them to do it gradually; as I told you, she's not even been on the Atopica long enough for it to build up.  Hopefully the internist will address this tomorrow....
    • Silver
    Just got a call from her vet.  The reticulocyte count is delayed, but her PCV yesterday was 43.4!!!

    :happy dance:
    • Silver
    Just got off the phone with Dr. Ishak (internal medicine).  Emmy's reticulocytes are between 72,000 and 75,000, so she's supporting her 43 PCV okay.  Some of her liver levels are still elevated, but her white blood cell count is finall normal or a little low.  He's cut her pred from 20 mg a day to 10 a day.  I'd been a bit worried he would do that, but I read about the proper dosage online, and it seems she should actually have been on about 15 or 16 mg a day initially (she was under 15 pounds at her sickest but is now 15.9 or 16).  If that's the case, the drop to 10 isn't as bad...BUT.  I'd talked to callie, who said the goal was to make sure the body didn't "notice" the drop.  The doc thinks the Atopica is starting to kick in (she's been on it 24 days), so my guess is that he's counting on it to take up the slack.  I know that, on her last blood test, one of her liver enzymes was continuing to climb. 

    He said he wants to avoid the effects of the steroid.  I wanted to run this by you guys and find out what your experience has been.  Also, he said it doesn't matter whether I give her 5 mg in the morning and 5 at night, or 10 mg in the morning and none at night.  Is one way better than the other?

    Thanks.
    • Gold Top Dog
    Quote from ME ... one very experienced (*sigh*) in all this crap -- I said this a year ago many times, and I'm still saying it:
     
    "This [IMHA] is like this HUGE race -- where you run as fast as you can to see if you can get the dog 'well' and keep them well, all the while trying to adjust the meds and reduce them -- racing all the while to see if the dog will tolerate the meds as long as they need to but can you get them weaned off them before there is 'too much damage'"
     
    Pred is dangerous -- truly is -- and if the liver enzymes are/were elevated then the doctor is using his own medical opinion to try to tip the scales in Emma's favor. 
     
    Now you could split the difference - you could go to 10 & 5 for a couple of/few days and then wean it back to just 10 (or 5 and 5 which would probably be my choice. ;)
     
    He knew that was a high dose.  Billy was on 40 a day for a LONG time and he was about 32 pounds.  For IMHA they push the heck out of that upper limit to pummel the immune system into submission.
     
    I'm going to say 'go with your gut'.  This is, bottom line, your dog.  You know her.  You know how she's acting.  You also have done your own homework, and you know how she acted (and how fast the pred did/didn't work).  You also know how fast she crashed (and at what dose??).
     
    This is probably where I call the vet and I say "You know Dr. _____, in total honesty, I have **worried** over this pred dose all week long -- I literally have been worrying about whether or not you were going to try to cut it really fast.  And in my gut I'm worried that if we shock the body too much that she could relapse."
     
    EMPHASIZE to him in a big huge way that you aren't trying to be the vet here -- but this goes beyond just casual worry -- but rather if he feels it's viable, could you wean it down from 20 to 15 to 10, maybe within even the space of a week, but rather than just shock the body ***IN CASE*** the cyclosporine hasn't kicked in, you'd really feel more comfortable with even a week's lag in taking it down.
     
    That's IF that is how you feel.
     
    If you talked to five different vets, you'd get five answers here.  5 regular vets/5 holistic vets -- wouldn't matter  --- 10 would get you TEN answers.
     
    Every vet developes their own 'feel' for prednisone -- I've seen vets/doctors who will tell you that if you take a max dose of pred for even 3-4 days that you really oughta be weaning it off every step of the way.  Others will tell you that it takes a week or longer before the body is 'addicted' ....
     
    When you go to a wean off 'dose' some will go half/half/half leaving maybe 3-5 days in between.  Some will go much longer.
     
    What's the difference?  I've talked to a zillion vets and doctors about this -- both human and animal.  And my own personal GP told me "It's the individual doctor's experience and what he/she becomes comfortable with.  No one is really more 'right' than another -- it's completely in the realm of that nearly undefinable term *medical opinion*"
     
    I don't know with an Italian Grey.  I do know they figured that it was Billy's breed that caused HIM to respond so incredibly slowly to the cyclosporine. 
     
    In your case, your dog responded well TO the pred.  And in this case, frankly, the cyclosporine is kind of your safety net. 
     
    Have they done the cyclosporine test??  Do they know what level it IS at in the body (and keep in mind that test ALWAYS takes like a week to come back so if you send off blood today, it's next week Tuesday - or longer - before you know what the level of cyclosporine was LAST Tuesday)???
     
    Your dog isn't still at a huge dose of cyclosporine.  Billy was at 125 mg before it suppressed his immune system enough *with pred at 40 mg* for it to leave the blood alone.  And it took 6 weeks.
     
    However -- then go to whatever the statistics are for Italian greys???  Darned near no buffy coat English cockers survive this nasty disease.  Why?  *****BECAUSE***** they don't respond.
     
    Do greys generally respond to pred?  Have you found any statistics?  Heard anyone tell?  Get on some IG boards if you have to -- But that would be where I'd put my guess I think.
     
    If your vet has done this research already ASK HIM.  Ask him what he's basing his wean off dose on???  Don't ask adversarially -- ask just because you want to know. 
     
    I do know my holstic vet (and I thot this was SO interesting that it was she who said this) told me that the animals she knew that did the best *long term* were the ones who took time weaning off pred in particular. 
     
    So *I* sucked it up, dealt with the pred belly, nasty UTIs, upset tummy at times, and we weaned the pred off slow slow slow and then FINALLY 6 months into the disease we finally began to wean off the cyclosporine. 
     
    BUT I always have to emphasize -- Billy's case was unusual because of his breed and the incredible BAD BAD BAD way the cockers - particularly buffy coated ones -- just don't respond well to this disease.  They know IMHA is somehow genetically linked -- either they are more prone to it or something in the breed gene pool welcomes it.  And also there are breed-related tendencies to stomach problems, food, and probably a genetic link to how well the drugs are absorbed by the body generally.
     
    So all of that adds up to one great big mega huge "I don't have a freakin clue". 
     
    But I also learned early on in this disease to TALK TO THE VET.  If I wasn't comfortable with something I'd ASK.  "Explain to me ..."
     
    'Why is it that .....'
     
    "What's the deal here ...."
     
    "I'm scared to death ... and I don't want to screw up ...."
     
    The first time we took Billy's cyclosporine down, we wound up having to put it back UP.  It broke my heart.  Was it a true 'bobble' ??  Did he really almost relapse??  Who the heck knows.  We don't.  WE never will.
     
    I think part of your decision has to be made after you talk to your vet.  I'd run it by another vet you trust for a sanity check if that would help.  What is this vet's IMHA survival rate?  How many cases has he treated? 
     
    And last but by all means not the least -- Billy's going to see Dr. Goldkamp at UF on Friday.  She's awesome at emailing -- ask your vet to talk to her if you want (and she's not the only one at UF who has dealt a lot with IMHA.)  I told her, in fact, about you and Emma and that you were going to the specialty vet clinic in Tampa, so that's not going to be unexpected if your vet talks to her.
     
    Man -- did that help???? *sigh*
    • Silver
    Yes, callie--it helped in several ways.  The first--and perhaps most serious--way it helped me is that you didn't say "by no means cut her pred in half!!!" 

    I don't know how many dogs with IMHA Dr. Ishak (who is also from UF, by the way!) has treated, but he said he usually cuts the pred in half.  I know that, in the end, she's MY dog, but I don't quite know how to approach him on this.  I had to call several times before I got a return call (and I don't think it's because he doesn't care, or isn't responsible; I think he just probably had several really critical cases, and hers is no longer one of them.  I do trust him; I'm just worried.  She did take the full five days to start responding, but once she did she REALLY started responding.

    Here's what he said.  He asked me what her current dosages were and, when I told him, he said to cut in half to 10 mg a day.  I expressed surprise and he said he usually does cut it in half.  He said that it can cause a relapse when you cut them back, but he wanted to avoid steroid...was it "steroid syndrome"?  Also, when I asked whether he wanted to see her himself, he said yes, that instead of taking Ems to her regular vet on Thursday, I should wait 'til next week to give her a week on the new dosage and then bring her in to him so they could run the tests (which cost the same both places, apparently because they both send them to the same lab) and take a look at her.

    I thought about calling him back to ask about cutting her back to 15 for a week or so and then dropping her back to 10, and pointing out that I'm getting ready to go back to school so I'm worried that she will start crashing and I won't be around as much (my parents are going to come back down, and Mom can come get Emma partway through the day each day, but, short of my moving in with them for the time being, she will be alone part of the day).  The thing is, I did already express concern about the drasticness of the reduction, and he said that he's trying to avoid the problems with the steroid, so it sounds to me like he's already thought this through--and he might be right.  I don't think she's been on the Atopica long enough for them to do a trough test, by the way; it won't even be four weeks until this Saturday.  I figure that's next, though.

    I want to walk the line between being a good doggy parent and allowing him to do his job (he is, after all, a specialist and knows more than I do!)....Gah.  I wish I could know how she'd do on 10 mg!  I know that that's kind of the problem; we never really know.  I think the original dosage was too high--but, man, she's doing well right now, with no real external evidence of pred use (except for hunger and thirst)...no nausea, no achyness so far....So, it's kind of a toss-up for me between "she can handle a little more for a little longer" and "she responded so quickly, she might not really need this much." *sigh*

    BTW, I have researched IMHA in IGs and haven't found all that much.  I did read one story of an IG survivor at [linkhttp://www.italian-greyhound.net/imha.htm,]http://www.italian-greyhound.net/imha.htm,[/link] but I wrote to the webmistress when Ems was first diagnosed and didn't hear back (the page doesn't seem to have been updated for awhile, either).  Last night (before editing this), I did a search for IG forums and found one! (igpost)  I've asked there about dosages; I have only seen a couple references to IMHA dogs, but hopefully someone can help me out (they don't seem to go into as much detail there as you guys do here--one of the reasons I love this place).

    Thanks again.
    • Gold Top Dog
    Given that Billy's was way way ABOVE 'normal' to start, I doubt Emma's was over-high.  This disease defies 'norm'.  However, that being said, get used to feeling/wishing "I wish I knew how she'll do on ...."
     
    cos you always feel that way with this.  It's ALWAYS a risk.  I'm still worrying every time we reduce the cyclosporine!  EVERY time.  But he's doing well ... however we have been cautious. 
     
    But getting the drugs down before their body crashes is *major* -- so if your gut says to trust him .... then do so.  At least I helped you see saw mentally sanely????
    • Silver
    Okay, thanks.  I think I'm going to go with what he said to do for now, and watch her like the proverbial HAWK.  At least I'll have a better sense before I go back how she'll do on the lower dosage.  I'm not looking forward to spending the money (when people say a trough test is "expensive"--how expensive is "expensive"?), but I AM looking forward to finding out how she's doing with the cyclosporine....

    BTW, one of the Iggy survivors on that board was only on meds for four months total.  I'm not expecting that, but it does sound like it truly is a case-by-case thing....
    • Silver
    Update: today's PCV was 50.8!!!  And her liver enzyme levels are dropping; they're in the 100s now instead of the 500s and 700s.  I'm guessing this is due in part to the decrease in pred and the Denamarin.[sm=floating.gif]
    • Gold Top Dog
    good job!!!
    • Silver
    Geez; Ems wasn't due for another CBC chem until next week, but since the doc dropped her pred to 5 mg a day last week, I had them do a PCV today.  53-55!  Holy cow; what if it gets TOO thick?!

    I'm hoping he'll start cutting back on the cyclosporine next; I'd feel happier if she were on much lighter doses of both meds instead of ditching the pred entirely and relying on the Atopica alone.

    But--yay!
    • Silver
    Things are going very well! I am so happy for you.