Reducing meds?

[Tamara]

Hi Jen, wanted to chime in with my 5 cents worth. My former specialist also initially wanted to just discontinue the cyclosporine. When he told me that, I told him that scared the hell out of me, and that I had never heard of anyone doing that with IMHA. I started asking around, and some people did a 50% reduction, some 25 – 33% reduction, all every 3 – 4 weeks. Could you ask him if there is a reason he wants to just discontinue? Is Maggie’s chemistry ok? Are there side effects occurring? Is there a reason he’s wanting to start weaning the cyclo rather than the pred? I can’t remember, how much does Maggie weigh? I also am confused about discontinuing it if she was on it for skin problems (side note — have you had Dr. Dodds’ lab check her thyroid function? Hypothyroid can lead to skin problems. Her lab can interpret the values in light of IMHA and the meds as well, something very few, if any, other labs can do).

I did decide to have a consult with another specialist and switched vets because of this and some other issues — mostly the first vet wouldn’t listen to my concerns and our current vet does, and Ashki is doing so much better now.

Unfortunately many of these vets seem to have ego problems — he should not be insulted by your questioning him, as Maggie is your dog and you have every right to question these decisions, and to have a say in them. This is how our first vet was too, he told me flat out he did not like being second guessed; thankfully our current vet is not at all like this, she welcomes my questions and takes my concerns and my input seriously.

Here’s the thing I have learned: we know our dogs better than anyone. Trust your gut about Maggie. I know it’s scary, but don’t let this vet bully you by his demeanor into deciding to do something that could increase the risk of relapse. And no matter what you decide, we’re here for you.

tamara and ashki
xoxoxo

[Jen]

Thanks. I’m going to call him tomorrow. I had a bad feeling the minute he suggested stopping it. I have not yet received copy of her latest CBC but the other vet on duty ( my vet was on vacation) said her blood work looked “Marvelous” and wanted to consult with my vet regarding weaning meds but agreed it must be very slow especially with cocker spaniels. She thought either the pred or azathioprine but wanted to leave that up to my vet. I was shocked to hear him suggest stopping cyclo. Mags has tolerated the drugs really good so far with no muscle atrophy or sickness.
He is my original vet. I don’t know how many dogs with this disease he is or has treated. His cocker spaniel had it 20 yrs ago so I believe he is knowledgeable.
Maggie weighs 29.2 lbs now.
Tamara, what did you end up reducing first? What was the first cyclo reduction? Maybe b/c it is 100 mg he thinks it’s high but I would rather reduce than stop.
As always all your advice is very comforting and so much appreciated!!
Love Jen & Maggie

[Tamara]

Hi Jen,
We reduced the pred quite a bit initially. Ashki initially was on a really high dose (he weighed about 60# and was on 40mg twice daily), so that was dropped in a week by 25% to 30 mg twice daily. Then it was dropped again a month later by 33% to 20mg twice daily, and then by 25% a month after that to 30mg a day (20 am/10 pm). Then 33% 3 weeks later to 20mg once daily. That was fast and his PCV was not stable, but he had a lot of muscle loss and the first specialist thought it could have been part of the problem with his kidneys.

When we went to the new specialist, she cut the mycophenolate in half, from twice a day to once a day, as it can suppress bone marrow and regeneration. She brought the pred back up 33% to 30mg a day. When Ashki’s PCV hit 30 and was stable there, she cut it back down 33% to 20mg a day.

His HCT went up to 34 and stabilized there for 4 weeks, so then she cut the cyclo by half, from 100mg twice a day to 100mg once a day. The cyclo could also be part of his kidney problem, and while that is so much better, it’s not there yet.

She just this last week cut his pred to 20mg one day, 10 mg one day. Once his HCT goes up to 36 we’re going to cut his cyclo again to see if that will help his kidneys.

The way we’ve done this is unusual; it’s my understanding that they usually do it like Hope’s Steve — wean the pred completely, then wean the other immunosuppressants. But Steve’s recovery was pretty straightforward, and Ashki’s has definitely not been LOL. Kidney problems are much less common with IMHA so that’s really been a challenge.

I hope that helps, sending you big hugs!
tamara and ashki xoxox

[admin]

Hi Jen. Bless you two for going through this – I know it’s mind boggling and so dog-gone scary. Hang in there and BE firm. As Sheena said, this is YOUR pet and YOU are paying. I think it’s taught in med/vet school, to question OUR knowledge.

What Sheena was referring to with Sadie, was when Sadie first relapsed. Upon initial onset of AIHA, once the cyclosporine and prednisone set in, Sadie really responded quickly and well and her PCV went up quite fast. As much as I love her vet (then, he now does 98% rescue work), he weaned her way too fast and she relapsed. Up to that point, he had been totally open to my suggestions and listed. He was quite impressed with the then, VetNet site, their commitment to this rotten disease and the knowledge base of everyone on the site. So, when he suggested this fast wean, I, like you, knew it was all wrong and Sheena and a few others said too, don’t do it. I didn’t listen and I did it and will never, ever forgive myself for it, as she relapsed when it got down to one prednisone every 5 days. Zap – we were back at square one and then some.

It has taken over a year to get her to a low dose of prednisone and then she, for some unknown reason, relapsed again. So, I know what you’re going through, first hand. It’s horrible.

Since Sadie had been on a high dose of cyclosporine, along with the prednisone, for such a long time (almost a year total, from onset), she was having some weird, bad reactions to the cyclosporine. My then vet (I didn’t leave him, he sold his practice, but I’m still there, long story) was VERY open to my suggestion, second time around (he is wonderful, just jumped the gun). He and some other cocker spaniel owners (cockers seem to have a harder time with cyclosporine) suggested I intermittently lower the doses, starting with the prednisone first and then the cyclosporine. Sadie, as several other cocker spaniels on cyclosporine, suffered palsy, twice. The first time was to her right side of her head and then the left side of her head. It affected her eating, she would slobber horribly AND she could not blink her eye (on the affected side) and I had to put in lubricating ointment 3-4 times a day. It was so sad to watch and I was beside myself. She still sags on one side of her mouth. But let me add, it does seem that cockers respond well initially to cyclosporine and it’s a incredible bad/good drug to promote the suppression of the immune system and therefore seeing a quite fast and positive rise in PCV.

So, we decided to drop the prednisone (25%, for 30 days) and wait a bit and then drop the cyclosporine (which was harder due to the sizes of doses, lowest being 10mg). She ultimately ended up on the prednisone as the increments are easier to dose lower and then we got her down to 2.5mg of prednisone, when she AGAIN relapsed just last month. :(

So, here we are – again. She rebounds fast, but goodness, I am so scared this time. I tell you this so you muster up the courage and strength to stand your ground on your gut feeling AND what is being recommended here. Sheena is right – I did not listen and she went through Sadie’s first relapse with me. I was a total basket case. Oh and yep, am again actually – I just know a bit more and try very hard to stay calm for Sadie.

Sadie was a bit like Ashki, in it not being a traditional weaning. To me, you need to look at the big picture. And with Maggie, on the three auto immune suppressants, like Sheena (I think it was Sheena) said, you don’t know which one worked. To stop ANY of them cold turkey is just not right at all. And I totally agree with Vally – if you need to, tell them it’s you that is so worried that it’s getting the best of you. YOU need it to go slow. Then, in turn, THEY need to listen (yes, Tamara – I agree, ego is a prerequisite for most md’s/dvm’s!). ;)

We are in your court and wishing you and Maggie the very best. Hang in there – you are so diligent and such an awesome fur mom. Maggie is one very lucky gal.

Love and huge, go-get-em hugs, Linda and Sadie

[Jen]

Hi, I really appreciate all the great advice and personal experiences with weaning. I spoke with my vet and he was very open to my hesitation. He wants to start with the cyclosporine because of the high dose and she has been on this drug for several years (allergies). We agreed to try the 100 mg every other day and she will be checked in one week to make sure things are still going well. I know 50% reduction is still high and I definitely want to wean the pred and azaithioprine much slower. I have noticed Maggie’s hind legs are started to give out occasionally so I believe she is starting to feel some of the effects of the drugs. Are you all back to giving your babies dog food? I have been mixing chicken liver, turkey, green beans, rice, and eggs in with some high protein red meat dog food but want to make sure she is getting enough nutrients etc…
Thanks again for the information. Your advice and stories are a real comfort when confronted with the difficult decisions and issues of this horrible disease.

Linda, I was very worried about Sadie’s relapse. I am so happy to hear the positive news. I think reading her story and her being a cocker spaniel; it really encouraged me that Maggie could beat this!
Love
Jen & Mags

[Vally]

Jen, that sounds heaps better to me. With the cyclo we’ve always done 50% reductions in the past, going from 25mg twice a day, then 25mg daily, then 25mg every second day for about a year. Just this very last time was a bit slower, going to every third day. I don’t think it’s quite the same as the prednisone with reductions.

Good luck on the next test.

Love Vally & Bingo

[admin]

Hi Jen

This is more sensible – good for you for getting your point across so well. It’s not easy sometimes. You can always put the dose back up if you get any problems – just make sure you have regular PCV checks to be on the safe side. We will all be crossing our fingers & paws for Maggie doing well with the reduction, of course!

I think the pred is the most likely culprit for the back leg weakness. Worzel was looking really, really bad in that respect on the pred & he had trouble getting on the settee & bed, he stumbled a lot & was very wobbly. I was amazed how quickly he regained his musculature when we lowered the pred & I can assure you he’s about 95% as fit as he was before the IMHA – he is 13 or 14 at least, so not bad for an old fella! Maggie has done really well & I’m sure you will also see a big improvement when you can start reducing the pred slowly. My advice is to do that next (although pred first is the conventional approach) when Maggie is stable on the reduced cyclosporine, but I don’t know what your vet is planning to do.

We are always here to try & help & advise you – if you are worried about anything at all, just knock some ideas around with us. Believe me, we have all been in this position & I can remember being absolutely terrified when we started reducing – I constantly checked Worzel’s gums & watched him like a hawk – he must have thought I was nuts! It was really hard, Jen, so we completely understand how you are feeling.

Give clever, sweet Maggie a big cuddle from all of us
Love, Sheena, Worzel & Ollie xxxx

[admin]

Hi Jen

I am so sorry that I have somehow missed this post. It seems like you’ve had a tough decision to make, but well done for talking through your worries with the vet so that you could reach a compromise that hopefully you are both happy with. It certainly sounds a more sensible approach to me. What did you decide about the aspirin? I’m afraid I don’t know so much about weaning, but my general position is one of playing it very safe with this condition and, unless there is a good reason to do things fast, keep things as stable as possible and lower/stop one medication at a time. Clotting is one of the biggest risks of AIHA and so my feeling would be to stick with the Aspirin for now if it is not causing Maggie any problems.

How is Maggie getting on? How long is it since you cut the cyclo dose down? I do hope it’s going well. I’m the random cat owner here, so my knowledge of dog food isn’t great, but I do know that several of the others here feed their dogs lots of different goodies including meats, fish, fruit and veggies, and some give yogurt too, which I am sure they will tell you about.

I completely understand your hesitation about questioning the vet, but I’m so glad that you did. It is massively important to be able to do this. I fully believe in a “partnership”. The vet is the clinical expert, and you are the Maggie expert, and both pieces of the puzzle are needed for the best outcome. You know Maggie better that anyone, so always listen to your gut instinct. It sounds as though you have a vet who is willing to listen, and that’s excellent.

Hoping things are going well for you and Maggie :)

Much love,

Mary and Mable x