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Is anyone anxious about the long term effects of TNF blocker treatments?

Posted , 5 users are following.

andrew03486
andrew03486

I know that many people are getting good results from using TNF alpha inhibitors, but are the long term effects a concern? Given that 80% of people diagnosed with AS were diagnosed before age 30, that is a long time to be on a immunosuppressive drug unless something better comes along. The first TNF blocker I think got on the market around 1999 and most of the others came shortly thereafter. So the longest time frame we are looking at is around 15 years.

What concerns me is the cumulative effect of taking these for 20, 30 or more years. I guess thats the nature of a new class of medication is you have about 2 years of clinical trials and then release it on the market and let the users give us the data as we go along.

0 likes, 4 replies

4 Replies

  • rose0000
    rose0000 andrew03486

    Posted

    Andrew I am just weighing up the risks now, after the consultant has now recommended this to be my next step. In my view the quality of my life has become so wretched, the risks are worth taking. My consultant believes that fifteen years is quite a long time actually and we would be seeing some outcomes by now. Obviously all new drugs come with risk, but for patients that are seriously ill and impaired by a chronic illness, and it is a last resort I am guessing they do mind being guinea pigs. The few friends I have whom are taking this medication have described it as a wonder drug, and if it transforms the best years of their lives, and indeed gives them a life back again. However I accept it is a new drug and we can't be absolutely sure of the eventual conclusion of these brand new drugs, but they are trialing them now with smaller doses which is encouraging.The next few decades should be very enlightening. 
  • wonkysausage
    wonkysausage andrew03486

    Posted

    Hi

    I have been on etanercept since 2004 and it has been a godsend - turned off the pain and (severe) symptoms within an hour of the first injection. I have since been reducing the frequency of injections where possible. In my view benefits have outweighed  the cons.

    That said, i have recently developed a heart condition under investigation, despite low bp,cholesterol and no family history so i do wonder if it is a side effecct

  • andrew03486
    andrew03486

    Posted

    I am glad that the entanercept has worked so well for you for this long. I hope the heart issue can be resolved easily.

    Are you having to suspend use of the drug while this heart issue is being looked into?

    Best Wishes

     

     

    • Strat1163
      Strat1163 andrew03486

      Posted

      Andrew,

      I completely understand your concern. I have crohn's and AS. I too had concerns about going on an immune suppressant. I was in extreme pain and disability and basically bedridden. I started taking humira in may of 2009 and within 3 days I was pain free. I was able to work, workout, and go on family vacations without the crippling pain and fatigue that are part of AS. But 3 months into it, I began to feel ill that was not like the usual symptoms of AS. I had trouble breathing, and symptoms like the flu. Turns out I had contracted klebsiella pneumonia and also candida fungus from the humira. The klebsiella was treated effectively with antibiotics but the fungal candida was treatment resistent and did not respond to fungal meds. Fast forward to today and I struggle everyday with candida on top of the symptoms from crohn's and AS. I now cannot eat anything that feeds the candida like dairy, fruit, sugars and absolutely no starches of any kind. If I do ingest any of these things I swell up and my skin gets tight and it feels like it will tear and have endless allergic type reactions. So much that if I eat even an apple I put on 10lbs. But if I do not feed the candida, I burn from head to toe and the pain is worse than anything I have ever experienced including my worst days with AS. This doesnt subside until eat starch or sugars etc but then I swell.I can't take any immune suppressants like predispose because it causes the yeast to grow. I took it a few months ago bc I was in agony from the AS joint pain but I ended up in the ER bc the yeast overgrowth from the steroids caused anaphylaxis and I had a seizure to boot. I also now have sensitivites to most meds including NSAIDS so i have constant disabilty from the AS. Looking back, I wish someone would have given me this advice bc I regret ever going on a TNF blocker like humira, remicade, or enbrel etc. It is your choice but honestly try to treat the AS through diet. Research the London AS diet and give it honest try for at least a month or so and if you need to take something for stiffness and pain try celebrex.

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