Frustrated!

Posted , 6 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hi all.

Diagnosed over a year ago with AS and started taking humira in September last year. So disappointed as no effect what so ever. Nurse tells me that they will stop the injections at my next appointment in March which I'm not to upset about as I don't want to be taking something which isn't helping anyway.

My problem is that I don't think that the most severe pain I have in my lower back and legs is the just inflammation but damage which has been caused by the 15 years of being undiagnosed.

Anyone else have the same problem? I'm at a loss to what to do as it's seriously affecting me with the pain, balance, loss of feeling in my leg etc.

Xxxx

0 likes, 4 replies

Report

4 Replies

  • Posted

    Hello they changed my injections from ethanol etanercept to one called benapali'to be honest I have never known pain like it all they say is give it time to work.I think after 3months it's not doing its job pain 24/7 they don't have to live and function with the constant pain no sleep feeling drained irritable.

    Report
  • Posted

    Hi,

    ?   I don't think your response to Humira is that unusual.  It seems that we either get dramatic results or no results.  At least that is what I've seen.  Personally I have been tried on three different biologics.  I've tried the Humira pen injection, remicade infusion and also simponi.  Noneof them did much of anything and Remicade caused an allergic reaction right there in the infusion chair when they tried to bump the dosage up from a very light 3 mg/kg to 4 mg/kg.  My current rheumy is considering going back and trying Humira again since it is now three years later, my symptoms have turned for the worse and my stomach just cannot tolerate NSAIDS or things like that.

    ?You do raise a good point about how much

    Report
  • Posted

    Boy, this website can be as frustrating as AS sometimes.  Wrong key stroke can submit your response before you are ready.  As I was starting to say previously, you do raise a good point about what is the inflammatory pain vs. what is more of a structural pain from a degenerated spine caused by years of inflammation.  Can you treat the inflammation and still have pain because of damage caused?  Dont really know what the answer is.  Personally that distinction has always been difficult for me.  Ive had three spinal surgeries including two cervical fusions because I have always had severe degenerative disc disease to go along with any inflammatory process and the debate has always been which one is the primary culprit in my pain.  I'm guessing it is a combination of both.  Hope you can get some relief since I understand your frustration.  Best wishes.

    Report
  • Posted

    Hi Yogi

    I was not diagnosed for several years. Was on a cocodamol and various anti inflamatory drugs for a very long time, and could simply not function without them. I recently went onto Benepali and the results have been life changing. I was at the point of resigning from my job, as my daily commute is around 130 miles, and I was really struggling to drive.

    Ask your doctor about other anti TNF drugs. Humira does not suit everyone, there are lots of other options.

    Hang in there. I really do know how you feel.

    Best of luck.

    Pat

    Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up