lou26
8 posts
Jul 08, 2010
1:50 PM
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Hi i was just wondering if anybody knows if there is an alternative tablet that can be taken instead of azathiroprine??
Ive been on it for about 9 months, i started on 100mg morning and night but was making me feel ill so my neuro put it down to 50mg morning 100mg night and i was ok on that dose. He has put it back up again and its making me feel ill again, mainly sick, some mornings i am sick.
I dont know the lower dose is working cause my anti body levels dont seem to be coming down, even though im symptom free.
So thats my question really, is there anything i can take instead??
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Brad
5 posts
Jul 08, 2010
2:22 PM
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I had to come off it owing to the side effects
and am now taking Mycophenolate mofetil (CellCept)
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chairman
MGA Forum Chairman
1564 posts
Jul 08, 2010
2:26 PM
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lou26
If you are symptom free - you should not worry about the antibody levels (let the neurologist worry about that!).
Have you discussed the sickness with the neurologist?
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 Peter Finney
MGA Forum Chairman
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ragdoll
356 posts
Jul 09, 2010
12:05 AM
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Hi Lou,
I have to say to be symptom free is what we are all aiming for so it me it sounds like you have been successful and looking for an alternative may not be necessary, as all drugs carry risks, and as you go down the line of alternatives, these risks do not diminish.
However being sick is unpleasant and certainly worth trying to resolve. Many people here take drugs and other drugs to counteract the side effects of the first drug, not just to control the original condition. You can end up being on quite a cocktail!!
My advice is to firstly try to get the sickness sorted. Then if that is too debilitating look at alternatives ( I have been trying to get a safe drug to control the MG for 11 years and certainly haven't found it! although it is now generally manageable..with many caveats.)
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sally1louiselouise
916 posts
Jul 09, 2010
12:52 AM
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If you feel well and are symptom free when the dose is lowered then the Azathiaprine is obviously working for you, it's only my opinion but I think maybe a little bit longer than 9 months is what it may take for the Azathiaprine to kick in completely and then perhaps you will see a difference in the antibody levels, but it does seem that you are doing OK moment which is why I would hesitate in trying an alternative, discuss this with your neuro.
SALLY
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Margaret
South Wales
UK
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AnnK
199 posts
Jul 09, 2010
2:59 AM
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Lou26
Has your neurologist explained exactly why he wants you to try a higher dose again? I appreciate that s/he wants to see clinical evidence that the aza is working by lowering the anti-bodies in your blood, but why is it necessary, as you're now symptom free, to give you a higher dose that makes you feel sick in order to reduce the antibodies - perhaps solely to see clinic evidence? Is it that s/he thinks that as there has been no drop in the levels you are bound to have a return of symptoms again at some point soon? - I can't see the logic in raising the dose otherwise, especially as the higher dose makes you feel sick and spoils your quality of life. I know that it's up to your neuro to decide all of this but it would be good to know the reasons behind it.
I don't have any experience of them, but as ragdoll says, some people have to take drugs to counteract the side-effects of other drugs - A friend of mine took an anti-sickness drug when she had to have cancer treatment, which helped her very much, so maybe there will be a pill that your doctor can prescribe that can help.
Do let us know how you get on. I am probably about to start taking aza so I want to know as much as I can about it and others' experiences of taking it.
Ann
Last Edited on 9-Jul-2010 3:03 AM
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sally1louiselouise
917 posts
Jul 09, 2010
8:37 AM
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Ann, when I started taking Azathiaprine I was started on 75mg daily after a few months this was increased to 150mg daily, I take this as 75mg morning and 75mg evening with no problems or side effects, I was taking it alongside the prednisolone for two years while reducing that until I became steroid free, that was three years ago, at the beginning the blood tests were weekly, then monthly and are now three monthly, I am lucky I can tolerate Azathiaprine, I was given the enzyme test prior to commencing it so the neuros knew I should be OK.
Hope this is of help
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Margaret
South Wales
UK
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lou26
9 posts
Jul 09, 2010
2:12 PM
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Thankyou all for your replys.
Peter - I discussed the sickness with the neuro the first time the dose went up then he put it back down, i havent spoke to him about it this time, he told me to lower it myself if i feel sick again but i wanted to give it a good chance first. He seems to be doing my treatment on my anti body levels which im told doesnt always need to be done thats why i say i worry the lower dose isnt working to lower the levels but your right i should let him worry about that.
Ragdoll - I think thats a good idea to get the sickness sorted first, maybe i can get some sort of anti sickness tablet.
Sally1louiselouise - i thought it took longer the 9 months for it to start working too but he said it should be working, whereas a spacialist nurse says otherwise. As i am symptom free i guess it is doing the job, unless its the steroids cause im still om 30mg EOD.
Ann - I think he wants me on the higher does to bring down the anti body level, im sure thats the reason why. he was talking about removing the thymus aswell because they havent come down but again i dont see why that needs to be done when im symptom free.
Lou
Kent
uk
Last Edited on 9-Jul-2010 2:13 PM
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jan the old one
146 posts
Jul 10, 2010
1:51 AM
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I had thymectomy on May 12th, felt great when I saw surgeon on the 11th june, she told me I would have to have radiotherapy as the wretched thing had gone through membrane etc.,still felt good, got on train to see daughter in Derby, after several days began to feel very very weird, cutting it short ended up in Derby Royal hospital with a pneumonia,fluid etc., and a whopping temperature which of course brought on a crisis. They stopped azathioprine as my body was not fighting the pneumonia. Dont know what will happen next.or what alternative will be?
p.s. Derby Royal Hospital was absolutely fantastic! can not praise them enough..having been in the chest ward for nearly two weeks I am soooo glad I don't smoke!
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AnnK
200 posts
Jul 11, 2010
12:36 PM
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Margaret
Thank you for telling me about your experiences with aza. I hope I won't experience any side effects too. In retrospect do you think you would have rather waited for the aza to kick in and left steroids well alone? Perhaps you didn't have the choice as your symptoms were too severe/pressing? I am considered by my doctors to 'only' have ocular symptoms (although I've been chronically ill with muscle pain and fatigue for over a decade) and so the decision to begin any meds I'm finding difficult even though my vision problems are affecting my life so much. I wonder how effective the aza is compared to prednisolone. I know that the latter works faster. I too have had the enzyme test and it was on the low side but within the normal range, so I'm hoping my chances are good for little or no side effects.
Thanks
Ann
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rick11
29 posts
Jul 11, 2010
3:11 PM
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Hi Ann i personally find azathoprine dose not work for me and i understood that it was prescribed as a steroid spareing drug for patients who had been on steroids for a long time and was supposed to do the same job but i always found that prednisolone with a low 5mg a day gave me great results with no side effects with mestinon at 30mg a day on top. I still have a bad day of fatigue if i do to much in a day without many breaks or if it is a very hot day but normally i pace myself and avoid to much sun so not to many really bad days.I know everone has different results for different drugs but i personally feel if the steroid dose is not to high people should not be so afraid of them as i have had great results with them myself all the best Rick
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Jen2533
113 posts
Jul 12, 2010
12:25 PM
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Hi Lou,
I just had Aza yanked from my therapy. I was fine on 50 and 100 but when we jumped to 150 my stomach felt like it had a canker sore the size of a basketball in it, I had fatigue like I have never experienced, and was constantly nauseous. Even when I split the doses and ate with it. I was on it from March through last Thursday and they only tested my blood levels twice, once a month after starting and once two weeks ago where my liver enzymes were triple the high end of normal.
My neuro switched me to Cyclosporine and will test my blood every two weeks. If that doesn't work then there is Cell Cept but he said he has only seen a small number of successsess on Cell Cept so he argued that Cyclosporine was the way to go with me. Hope this helps.
Hugs,
Jen
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AnnK
201 posts
Jul 13, 2010
1:08 AM
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Hi Rick
Thanks for letting me know about your experiences with aza. With regard to my taking steroids I think I would be less wary of them if I were a normal weight, didn't have diabetes in my family, wasn't hypothyroid and didn't have a vitamin D deficiency - all of which could be made worse with steroids. I was told that I would have to be on a high dose by the specialist that my neuro sent me to. so that worries me too. Also, I am sero-negative, with mild symptoms of MG that I can remember from childhood, so I am now wondering whether steroids and/or immuno-suppressants are really the way to go for me. I shall discuss all this with my neuro, of course.
Many thanks
Ann
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chairman
MGA Forum Chairman
1578 posts
Jul 13, 2010
1:14 AM
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Rick
Many neurologists start azathioprine therapy very soon after MG is diagnosed. Their objective is to reduce the dependency on steroid therapy as quickly as possible.
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Peter Finney
MGA Forum Chairman
Last Edited on 13-Jul-2010 1:14 AM
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AndrewN
6 posts
Jul 13, 2010
4:27 AM
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And many don't ---
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rick11
31 posts
Jul 13, 2010
5:52 AM
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I was just telling of my own results with AZA and a low dose of steroids and many MG sights i have looked at say PREDNISOLONE at the lowest dose that works is a good long term treatment of MG with AZA as a replacement if you are having trouble with steroids but all nurologists have there own preferances of treatments so it would be interesting to have a big survey to find the overall best treatment all the best everyone Rick
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chairman
MGA Forum Chairman
1580 posts
Jul 13, 2010
9:06 AM
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One of the best clinical trials into treatments for MG was done in Oxford some years ago (team led by the late Prof John Newsom-Davies).
The trial showed that for most myasthenics a compilation of Steroids and Azathioprine was better than Steroids alone, and allowed the steroid dose to be reduced.
Unfortunately not everyone can tolerate Azathioprine.
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Peter Finney
MGA Forum Chairman
Last Edited on 13-Jul-2010 9:07 AM
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