Steroid doses and Frustrations

[DW]

One thing that I am always learning about and also getting so frustrated about is the way in which these drugs are no difference to the 'fine-tuning' of a car (a horrible analogy I know).     

Frustrated, because when you reduce the meds (even gradually it seems) and are doing well at a particular level - then, you drop the dose and you have a relapse.     These A.I. diseases are really THE most difficult things to get on top with - you just don't know all the time, what you are dealing with and as it is the most intricate parts of the dogs body that come into play - things that are not obvious, you are really using trial and error means.

Over the past few days I have been going through the reams of records I have kept since Harley was diagnosed six years ago - hoping that I could find a common factor.   Perhaps, I thought, it is a seasonal 'thing'  as I have to admit a few of the relapses have occured during the latter part of the year/very early spring  but not always.    Could it be the inter-action of drugs at various doses - it certainly seems that when we take Aza's away, we do see a change in his platelets and certainly, on a couple of occasions when relapses have occured, it has been when we have stopped the Aza's.
Perhaps he has an absolute minimum dose of Preds he needs to keep him stable -  records have shown that problems seem to occur when we reduce beyond 15mg but then, he was on 10mg EOD at one stage and seemed to be stable for a while.
After this last relapse, which followed a very brief period (6 weeks) when we were off  steroids and Aza's but kept the Melatonin going, we thought we had cracked it.....the Melatonin had worked and though expensive, had far less side-effects than the other drugs.      No, that wasn't to be and the relapse was very sudden -  from mid-300's to  25 !!!!

So, we are back again, very gradually reducing the Preds.    Even now though, we had a slight hic-cup when his platelets started to drop a bit and the Preds had to go back up.  I have chosen to re-introduce the Melatonin, as it seems (only guesswork at this stage) that the combination of Melatonin with the other drugs, help.    Every reduction we make now, makes me much more nervous than ever before and I am now almost thinking, that if we reach a stage when Harley seems to be better and the side-effects are at a minimum, then that is the dose we will remain on until blood tests tell us otherwise.

I wondered if there would be any merit, in inventing a questionnaire-type form, asking a few questions, that those of us who have dogs with Immune issues, can complete and maybe, just maybe, we may pick up one or two commonalities that could give us some food for thought?
A  simple questionnaire, asking about Age, Historical info on breeding lines, Food, Water, Environment, Exercise, Vaccinations, Wormers, Drugs etc.
I'd be happy to draw up a format but have no idea at all how I would transfer to this site !!!   I spoke to the AHT recently,  as I had heard they may be looking into A.I. disorders as a whole but unfortunately that isn't the case, they are looking at one particular disease (I think it may be SRM) but I suppose the cost of research has to come into play as well.

Just a thought

[Catherine]

I can feel your frustration. An owner with (or has had) a dog with autoimmune disease can go round and round trying to work out the trigger and the correct medication. My AIHA dog was on medication for a year and then came off and luckily never relapsed.

Is it possible for you to put in concise form the dates, the medication, the reductions and the AI illnesses for Harley so that members can get a better idea please?

Also do you vaccinate, worm, use flea/tick preparations etc. with regard to Harley?

[DW]

Hi catherine

Of course I can do that, almost from the date dot but in fairness, when he first relapsed it was before I knew of CIMDA and the importance of keeping an eye on things closely and I didn't monitor then.

I haven't always made a remark on what reductions were made against each blood test, mainly because on the 3rd relapse, I followed my own gut feeling and disregarded to some extent the Vet's advice in reducing (which I felt was too rapid).  If you don't think it will be too long a 'saga'/
Tell me how far back and how much would be useful to mention and I would be happy to do it of course.

[DW]

Sorry

Forgot to add answers to your questions...

Vaccination:

It has always been my policy to have them vaccinated as puppies but no boosters after that and even the puppy vacs I tend to do a little later than
usual, as feel the mum's immunity is present for longer (probably wrong on this).


Flea Treatments:

I don't use them (at least not the chemical types) never have done.
I used to use Dynamite which was effective but latterly, use only oils.


Wormers:

Very random I'm afraid.   Hardly ever would be the best answer but no more than once a year if I do.   If I saw worms I would worm them.
Harley I don't worm though.......feel it would be too dangerous. (Liver stress etc).

[Catherine]

Oh I did not realize  he had relapsed so much. Did you manage to get him off all medication, if not what was the lowest amount he was on? What was the longest time he was on medication?

All dogs are different, perhaps Harley has to be kept on a maintenance dose of steroids. I took a year to gradually reduce and stop my AIHA dog's  medication. She had a dip so I took it slower than the "protocol" seeing as she was coping okay with the medication. She was also on Azathioprine. The dip came when I started the Preds EOD so then I reduced the Preds but kept to daily. The Aza. was the LAST thing to be reduced after I stopped the Preds. My dog had just the Aza for five months very slowly reducing with longer time in between until  weekly then finally stopped. It was some years ago and we did not know about  a "protocol" but we were lucky it worked.

It seems you are doing things right by being aware of reducing the triggers so I can imagine how disheartening it is when he relapses.

[DW]

Hi, yes we seem to have taken an eternity at times.

Harley was diagnosed when he was around two years of age, which is young as IMTP commonly occurs at middle age I'm told but certainly not commonly so young.   
When diagnosed, he wasn't presenting any of the more common symptoms and it was only thanks to an observant Vet that picked up on tiny tiny pin prick hemorrhages  in the inside of his ear flap and investigated further.  Platelets at that stage were 30.   Before even sending the bloods off to be analysed and rule out Tick disease Von WB  etc., she had started him on full I>S. dose of Preds and when we re-checked just a couple of days later his platelets had increased and then,  four days or so after that they had increased further.   It seemed, that first time, he had shot up to 600 score in a very short time and we then embarked on a reduction programme, which was decided on by the Vet.   There was no formula as such, his bloods were tested and if the platelets were good, we reduced.    Things seemed to be going o.k. until we reached around the 10mg daily dose, when the platelets started to drop again.   We would back track to the previous dose for a while and then resume the reduction - checking bloods every two/three weeks.  At around this time, the blood machine at the Vet wasn't consistent and so the results each time they dropped were sent off to the Lab.   When we reached around 12.5mg and they started to drop again, (about 152) it was suggested that I see a referral Vet and so I went to Cambridge.    Initially, it was thought that the Antepsin and Zitec (not Zantac) he was on to protect his tummy, could possibly be interfering with the absorption of Preds, even though I was ensuring the Antepsin was given two hours before the meds.    So, the first Vet we saw at Cambridge told us to stop the protection (first the Antepsin went and a week later the Zitec was stopped) and at the same time the Preds were reduced to 5mg !!!
I was really concerned, as here we were with a reducing platelet count and yet they reduced the Preds !!!   However, two weeks later we returned for a blood test and surprisingly his platelets had increased a little (I think it was around 170'ish).    We returned to have the bloods done at Cambridge two weeks later again but the platelets fell again and were back down to double figures.
The suggestion was made that we try Cyclosporin, something that had been suggested to me by my Vet but I was really against using this drug and we tried instead to go back to adding Azathioprine at 50mg daily, along with an increase to the I.S. dose of Preds again.
Harley suffered quite bad side effects...muscle wastage was significant particularly in his head shape where his occiput bone became very prominent.
We managed to get the platelets back to a more significant score but again, as soon as we dropped the dose, after a while his platelets would drop as well.  We were still being reactive rather than proactive though (great hind sight isn't it !).....
We were asked to consider Cyclosporin again and out of desperateness I agreed but despite being on this for 6/8 weeks, it did nothing for his platelets and though we also kept the Preds going, they were only given as 5mg daily with the cyclosporin.    His platelets hit an all-time low of 25 after being on this drug and so,  as it was doing nothing for him, we once again put Harley on to the I.S.dose of steroids.
A couple of weeks later, I got a phone call from my Vet at Cambridge to ask if I would consider using a drug that he hadn't tried before but was used widely in the States and he had been talking to his colleagues over there about it.   This was Melatonin and so, in March '14 we started  using it.
Though slow,  we did start to see the Platelets increase and they continued to do so.    Part of the reason for the slower increase was due to the fact that my Vet, because of the side-effects Harley was suffering, didn't want him to go back on to the full IS dose of 60mg daily - we gave 30mg daily alongside the Melatonin and of course, because Harley had suffered a gastric bleed initially (he wasn't prescribed any tummy meds when he was first diagnosed and he had a bleed a few weeks later), he was given just Rinitidine (at that time we were unable to get hold of any Antepsin).
Things seemed to be going well.   We had a slight worry with his bloods (RBC's) at one stage, as they dropped a little low and I was terrified that we may be looking at Evans, however it was confirmed that he hadn't and that it was drug-related.   His RBC's did improve but they have been a bit erratic since.

We followed the protocol of Prof Day rigidly, on my insistence this time round but when we got down to  7.5m daily, I insisted taking things even more slowly.   We went down .5mg when we reached 6.00mg Preds and kept to that all the way down, maintaining the Azathioprine, which had gone to an EOD dose at this stage.   
Eventually, months later....I think it took to September '16 (almost two years) taking things slowly, tweeking it when we thought it may be needing it, until we eventually came off the Preds all together and then the Aza's, which went from every day to every other day and then every third day before finishing those too.   We had actually stopped the melatonin as well at that stage, as he was doing so well.  His platelets were constantly around the 300+ mark.
Then, in December last year, we took him for his monthly blood test - just to make sure he was ok. over Xmas period ........his platelets were 25 !!!!
So, for the 4th attempt, we put him straight back on to the iS dose, + Azathioprine.
On the 19th January this year, 43 days later, we had a platelet score of 420.    A week later, it was 398 - insignificant maybe but now I am doing things differently.   Vet said to reduce, understandably, as the score was good and so we lowered by just 5mg to 20mg daily, even though he had only been on 25mg for a week.
Two weeks later, they had dropped to 290 and again, we were told to lower the Preds to 15mg (In fairness to the Vet,she was concerned about the side effects and the results from the blood tests ete etc).
Ten days later, we checked his bloods again and his platelets had dropped further to 192, so we stayed on 15mg an checked again a few days later, only to find he had dropped again to 159.
We then increased the Preds to 25mg daily but I then decided to put him back on to Melatonin and since then they have started to rise again.
They are currently at 434 and this time, I have ensured we stay on the doses for a full month and only, only if we stay the same on the count or increase, do we drop the preds and I want to go back to my previous rule of reducing very slowly.  We have this week reduced by 2.5mg after being on the previous dose for 4  weeks.  He is also now taking Omeprazole 20mg each day.
I know this isn't doing Harley any good, these high doses but by prematurely dropping the doses, we only cause more problems because we are constantly having to return to much higher doses.
I have also decided that if, this time round, we are lucky enough to get to 5mg daily with the Melatonin and the Aza's (EOD), then that is where we are going to stay.....  He is six years of age and his life has been one of vets visists, medications and generally losing all his youth to this horrid, horrid disease.   

I can give you a much longer version, giving all the platelet counts week by month but not sure this will be of use.   If you think it would help at all,  I am happy to format it for others to see.

[Jo CIMDA]

Hi Gwyneth

Thanks for the potted history of Harley's illness. I wonder if you could also put it in the 'Thrombocytopenia' section and perhaps 'Our Dog's Stories' section.  I might help others when they are searching through the files.

Thanks

Jo

[Catherine]

Phew! That is some history! (I do not need any more details thanks, that gives me some idea as it is). It must have been so demoralizing at times. Obviously some of it has been due to the hit and miss of medication etc. But hopefully he will soon be on a protocol that suits him.

What did the vets have against Azathioprine? I thought the side effects were more due to the high dose of Preds.

I think you seem to understand most of how it all works and you know your dog so I would go with your gut feeling on medication and reduction and try not to be persuaded by your vet otherwise, unless they have a very good reason for a certain treatment!

I have no experience with the Melatonin. As I said before, Azathioprine was the last medication to be reduced and after we stopped the Preds altogether we did carry on with the Aza daily for a while. Just a thought, IF you wanted to do that with Harley but were concerned about the side effects could you not try a smaller dose of Aza - 25mg instead of the 50mg?

[DW]

Hi Catherine (and Jo of course....I will transfer to the appropriate pages as suggested)

I did note Catherine, your regime with the Aza's and I think that may well be one of the things I need to look at keeping Harley on long term.

The Vet didn't actually have anything against the Aza's and in fact, in September '16, prior to the latest relapse, we had completely stopped the Preds but were still hanging on to the Aza's, going lower dose and every day to EOD and every 3rd day etc, eventually stopping them too.
Looking back and pure guess work again, maybe if I had kept him on the Aza's and the Melatonin, that would have worked.   If we are fortunate t get through this one safely, that is something I will give though to definitely.

Gwyneth

[Jo CIMDA]

"maybe if I had kept him on the Aza's and the Melatonin, that would have worked.   If we are fortunate t get through this one safely, that is something I will give though to definitely".

Hi Gwyneth

I think leaving Harley on Aza and melatonin this time around has a lot of merit, also a low every other dose of preds  too.  There comes a time when it is better, in the long term, to maintain remission on a low dose of drugs than to risk a relapse again. 

Thanks for all the information- it will help others in a similar situation.

Jo