About to begin Anti TNF therapy. Does Any one have any thoughts of suggestions?

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I'm a 32 year old male. Recently I've been diagnosed with AS. This is after being misdiagnosed with Fibromyalgia for the last 6 years.

I am now about to start anti TNF next week and i am scared out of my wits after reading and talking to people about it.

Has anyone else been on anti TNF?

Any ideas how I can stop it all from consuming every moment of thought I have?

I'm ranting in the hope someone replies as I just don't know what to do or who to turn to right now!

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6 Replies

  • Posted

    Can I ask where in the world you are? I cannot help you with your question but..

    I was diagnosed 12years ago and and have been on nothing more than anti inflammatories and painkillers, I am jealous.

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  • Posted

    Hi Dan,

    ?   I think the simple answer is that if the treatment is bothering you so much then you should consider something else.  There are alternatives to the biologics although most others tend to treat symptoms rather than go after the root causes.  However, if it were me, I would give the biologics a shot.  All serious drugs have potential side effects.  The key word there is potential.  Many many people take them with none of the side effects and there is the potential for good relief.  I personally have tried humira, remicade and simponi.  Unfortunately they did not give me the relief that I was looking for and I even had an allergic reaction to Remicade right in the IV chair.  They gave me Benadryl to counteract the reaction and I moved on.  I am in the process of trying to get insurance approval for Cosyntex so I can give that a try.  It has a slightly different mode of operation and to me it's worth the gamble.

    ?  Basically you have to weigh the cost-benefit and make a decision.  Not worth losng sleep over though.  Generally they give you up to about four months to see if you are getting any benefit.  If not they stop.  I have told this story several times on this forum but I became a fan after seeing what Remicade did with my wife's RA.  She was wheelchair bound and in constant misery.  Her life was hell.  She had tried several of the current drugs including prednisone which was very toxic for her and caused her to require shoulder replacement.  She was put on Remicade and after finding the correct dosage for her it has been a complete gift from God.  Her RA is for all intents and purposes in remission and she feels great.  Every once in a great while she may have a flare and will take a dose pack of prednisone to augment the Remicade but for the most part the Remicade has been awesome.  She would do it again a thousand times over and in the last 13 years......no side effects.  Clearly, there are others who did not get great effects and some who did have side effects.  But that is just part of the equation.   Best of luck and I hope you make the correct decision whichever way you go.

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  • Posted

    Just to know, it might take 6 months to activate.  I've began Humira 4 1/2 months ago and it's only now starting to work but only a little.  Hopefully more before my next appointment in August.  Everyone is different.

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  • Posted

    Yessss!!!!no starch diet will help you.No sugar ,no pasta ,no yeasty breads.only sourdough brown.no alcohol.Fruits and vegetables.Raw...Before sleep take 3-5 cloves of garlic cut to small peaces and SWALLOW with water for 3-4 weeks.Its cutting pain.thanks
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