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Immunosuppresants

[Deleted User][Deleted User] Posts: 6,204
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in Advice #1
Hi

I know this is a bit of a long shot posting here but I was wondering if anyone has ever taken immunosuppresants in particular Cyclosporin or Methotrexate? I am concerned about the side effects as they seem a bit scary. I have severe asthma and my hospital specialist doesn't think there are many things now left for me to try which may be suitable as I am on most classes of Asthma medication including steroidal treatment. I am giving it alot of thought before deciding whether to trial this treatment.

Any input greatly appreciated and again appreciate its a long shot! :)

Simi x

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    ladydragonladydragon Posts: 3,386
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    #2
    What are you particularly wanting to know? The effects on your own condition would be difficult to predict as they aren't first line choices and human variability denotes what works for one won't work in the same way for another...

    The symptoms can be a tad ropey for each of them - for *some* who use them...

    Methotraxate can have different detrimental effects between men and women and if you're female I'd assume you'd discussed pregnancy issues? Cyclo can have similar effects on both sexes - increased hair growth and gum overgrowth can be two of the more particularly noted ones...

    Medically induced immunosuppression full stop brings it's own little bag of tricks such as an increased risk of infection and other, rarer effects but these aspects would all be ones for you and your doctor to chat about with full knowledge of your asthma and trying to balance any potential risks with the potential for better health... Unfortunately it is a trade off - take meds which aren't particularly nice in the hope they'll make day to day living more comfortable...

    You would need regular checking and blood tests on both drugs...

    Anecdotally, Mr Dragon was on Cyclosporine for yonks for his kidney transplant but unfortunately succumbed to more adverse problems and had to be switched to Tacrolimus then Sirolimus... A female friend required laser work on her chest to remove hair growth but on balance of maintaining her pancreas it was a reasonable trade off to her and another friend has been on it 18yrs with no problems... A friend with psoraic arthritis vomited for Britain on Methotrexate and had to come off but I've seen other patients have minimal or unreportable complaints with it... It is just so variable between different people...

    Make a list of your questions about each of the drugs before you sit down next with your doctor or if you have a clinical nurse specialist in asthma on your team perhaps you might find it easier/more informative to speak to them first before going back to the doctor...

    You may also find Asthma UK to be of some assistance... They have an advice line staffed by asthma nurse specialists... http://www.asthma.org.uk/

    Hope you're able to feel better soon... :)
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    rosemaryrosemary Posts: 11,389
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    #3
    HI :)

    I've been taking Cyclopsorine for the past 18 years or so, I had a kidney transplant '84 and was taking prednisolone, but due to weight gain I was changed to cyclosporin as part of a trial and have taken it ever since

    For me, it has worked well, I do have have some side effects,but I take a lot of other medication as well, including another innumosuppressent called azathioprine.

    As ladydragon states, Cyclosporine does cause you to be more susceptible to catching viruses and unwanted hair growth for me is a bit of an issue, although easily dealt with. I have been lucky in that I haven't had the gum overgrowth that some people get. Probably the worst and most noticeable side effect I have had is a skin condition called Sebaceous hyperplasia, But you would have to take quite high doses long term to be affected with that

    I agree its probably best to speak to your doctor, as all drugs affect different people differently

    Good luck whatever you decide to do, I hope you feel better soon :)
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    FieldfareFieldfare Posts: 2,739
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    Hi Simi89. Mr Fieldfare uses methotrexate (he gets infliximab infusions, has AS). He was very worried about taking it, he as a fear of hospitals, well medical treatments in general, makes him very very anxious. He delayed starting his treatment for over a year while he thought about it. I can't add any more than the posters above, usual things about being aware of the potential for minor infections to become more serious and implications for pregnancy.

    The treatment has gone exceptionally well for him, changed his life (and mine) frankly. He seems to be a tough old goat too, I've had a couple of stinky colds since he's been taking it but he didn't even get a sniffle. Obviously you would be taking it for different reasons and are a different person so you will have to feel your way with the help of your doctor/nurse. Just wanted you to know its been OK for him.
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    starman700starman700 Posts: 3,113
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    I have been on cyclosporin since 1996 when i first started taken them i was on about 300mg a day and ended up having tingly sensations in my hands,however it didnt last long

    im now on 100mg a day and no side effects at all
    Hope that helps

    ps i would give them a go.

    pps i can vouch for the extra hair growth but i didnt mind and it stopped my receding hairline in my 20s :D
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    [Deleted User][Deleted User] Posts: 6,204
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    #6
    Thank you all for your replies :)
    I appreciate the honesty.
    I will definitely give it some thought and discuss it with my consultant before deciding if I want to give immunosuppresants a go.
    thanks again x
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    [Deleted User][Deleted User] Posts: 511
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    #7
    Fieldfare wrote: »
    Hi Simi89. Mr Fieldfare uses methotrexate (he gets infliximab infusions, has AS). He was very worried about taking it, he as a fear of hospitals, well medical treatments in general, makes him very very anxious. He delayed starting his treatment for over a year while he thought about it. I can't add any more than the posters above, usual things about being aware of the potential for minor infections to become more serious and implications for pregnancy.

    The treatment has gone exceptionally well for him, changed his life (and mine) frankly. He seems to be a tough old goat too, I've had a couple of stinky colds since he's been taking it but he didn't even get a sniffle. Obviously you would be taking it for different reasons and are a different person so you will have to feel your way with the help of your doctor/nurse. Just wanted you to know its been OK for him.

    Ive taken infliximab (along with other immunosuppressants over the years) when my CD was at its very worst. There were some irritating side effects and the susceptibilty to colds etc but on the whole my quality of life improved so much that it was worth putting up with some of the side effects. It is also worth noting that if a patient reports a symptom or side effect to the drug company, they are obliged to list it against that drug - it doesnt mean that every patient will experience all or any of the side effects listed. Hope you feel better soon.:)
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