Biologic Drugs and AS

Posted , 3 users are following.

Hi all,

  There are a couple of discussion threads going on about specific medications for AS but I have a general question about medications and I didn't want to redirect those discussions so here goes.  In the course of my treatments I have been on numerous anti-inflammatory drugs from simple Celebrex to the more exotic biologic meds like Remicade, Simponi and Humira.  Nothing that I have taken has given me that "ahhhhh" response.   The response has been subtle at best.  I found this disappointing to say the least.  I have spoken in the past here about my wife's response to Remicade for her rheumatoid arthritis and I was hoping for a similar effect on my condition.  That never happened with any of the drugs.

But here is the real issue.  One of the rheumatologists that I was seeing made the comment that since we have not been able to find that magic bullet it does to some extent call into question the diagnosis.  She made the point that taking these drugs is therapeutic on the one hand but it is also diagnostic.  If none of the standard AS drugs has any dramatic effect then are we really dealing with AS??  This is a question for me because I do not have the classic x-ray signs of ankylosing and I do have a good deal of degenerative disc disease and plain old osteoarthritis in the facet joints. I have had rheumatologists disagree somewhat about the diagnosis and it was settled to some extent that I have seronegative spondyloarthropathy.

But what I really wanted to know is this:  Is it really that unusual for the standard AS treatments to have so little effect??  Based on what I have heard here I would say that I am not alone in that regard.  If you have had an experience one way or another on this issue I'd like to hear about it.  And if you have had a dramatic effect from one of the major drugs out there I'd like to understand what that effect feels like.  Does it make you pretty much pain free or does it just tone the pain down enough to function almost normally.  Maybe my expectations were just too high.  With my wife Remicade was a miracle drug that has effectively put here RA in remission and I was hoping for some similar drama which never came.  

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  • Posted

    Hi Peter.  Great post, and interesting question.   I bet most poelpe struggle with a diagnosis that has no cure.  The drugs assist with symptoms and modify the disease but the root cause is not uncovered.  

    I would like to follow this discussion.  

    I have often questioned my diagnosis of SpA (SA).  Ofcourse technology (MRI) etc has made early diagnosis possible and it is benefecial to start medications asap BUT with consideration of risk versus beneefit.  

    I am currently on sulfasadine.  I will give it 12 weeks.  I hope it works as in my view I would like to avoid some of the more compliated and stronger drugs but a the same time I am greatful that there may be something to help me in the (near) future when/if I need it.  

    I have also heard professionals say the same thing .."if it doesnt work (the drug) then at least we know its not that (the disease)".  

    All the best.


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  • Posted

    Thanks guys.  A couple of random thoughts here.  First there was one time when the antiinflammatory prednisone was given to me intravenously when I was having a fusion surgery on my neck.  The effect of that drug was dramatic and lasted for a while thereafter.  That is the only drug (standard antiinflammatory or biologic) which had any noticeable and undeniable effect.  Oral prednisone which I have taken for "flares" did not have the same dramatic effect.   I have been told that what was given to me in surgery was not technically prednisone even though it was called prednisone but regardless it had a solid effect.  I joked with the surgeon that he was so good that he fixed two problems at the same time. But clearly I do have structural issues going on too.  I've had three spinal surgeries and have been told that the degenerative disc disease is bad enough in the lumbar that I may be looking at a fusion of that whole area somewhere down the line.  And I have had numerous facet rhizotomy procedures to deal with pain coming from the facet joints.  That is the difficult part of diagnosing this monster when you have other suspects that could very well be causing pain.

    As to the second opinion Kay I have seen four rheumatologists now.  The first made the original diagnosis.  Subsequent rheumys agree that she was "probably right" but they were less enthusiastic.  But that goes back too to a previous discussion I've had on this forum that there are too many rheumatologists out there that are not particularly skilled or experienced with the family of AS illnesses.  They were stuck on the fact that I did not show radiologic evidence of ankylosing and did not consider a non-radiographic spondyloarthropathy.

    But getting back to the main point of this thread brings up a related question in my mind.  If AS in its various forms is an autoimmune process which causes inflammatory reactions in the spine and elsewhere isn't it true that the inflammatory reaction causes physical degeneration?  It would seem that as time goes on you are getting more and more physical degeneration in the spine which causes more and more pain outside of the direct pain of the autoimmune reaction.  So, over time, if the drug works to counteract the autoimmune response it will have less and less actual impact on the pain aspect because the pain is coming from degenerated spinal structures that arent coming back.  Maybe I'm overthinking this thing.

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    • Posted

      Pete I am almost with you but not quite.  I am going to re read in the morning.  I agree re Rhuemies.  Its a new profession right? 

      When you say Radiographic do you mean damage showing on xray or do you mean specifically the 'alkolising'?  I want to understand a lot more for my own sake very much.  There is nothing wrong with us questioning as long as we do it respectfully, dotors hands are tied often by time and energy and legal liabilities and standards and procedures and just personal attributes so we must persist with our questioning.  Stay in touch.  

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  • Posted

    Hi Kay

      By radiographic I mean x-ray or MRI evidence of fusing and/or evidence of inflammation that shows up in the SI joints.  My imaging studies show a great deal of degeneration but do not show the classic AS fusion process going on.  Also, even though I have considerable pain which is suspected to come from the SI joints, imaging studies of those areas do not show the corrosive effects of chronic inflammation.  Hope this clarifies a bit.

    My diagnosis was made on a few other things:

    1) I am HLA-B27 positive.

    2) I have a long history (many years now) of back pain which is absolutely worst in the morning and gets somewhat better with subsequent movement and time

    3) Family history of the same issue.  Mother started this circus with similar problems and all three of her offspring are similarly afflicted.

    I also have some anecdotal evidence which speaks to me even though it wouldnt speak to a medical person.  As a child I remember hearing my mother once say that the doctors actually told her that her back was fusing.  She used those words but at the time I had no reason to take that literally.  She was also German and often her words were filtered through her German/English language and you sometimes didnt know when to take her words literally.  But also my brother is the worst off physically of the offspring.  His spine is now very deformed and he has the classic look of some AS patients.  He suffers from severe kyphosis of the neck and his chin essentially rests on his chest.  His spinal deformities which came later in life have now left him a paraplegic wit no control of his legs.  My sister needs a walker to get around because she is also having nerve issues because of the spinal problems.  But alas none of my offspring nor my mother ever pursued this issue by seeing a rheumatologist so I cannot get any corroboration from that.

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    • Posted

      Pete.  Such an awful disease.  My sincere best wishes to your family, how strong you all must be.

      Here's the thing...with me...

      Yes MRI SI inflammation (no xray damage nor spine fusion).

      Plenty of SI pain (now in both, initailly left only).  

      Not positive to HL27 as above. ie Seronegtive.

      Also negative Rheumatoid factor.

      No inflammation blood markers (only elevated 6 months ago at intiail diagnosis).

      I have little stiffness, and pain is least with some movement but can do TOO much.

      Brother diagnosed with severe fusion on xray 23 years old, now meds and now NO radiographic evidence of any disease.  (he has morning stiffness related to things he eats).

      2 rheumies in agreement 

      This is the varying nature of diagnosis and developement both with and without (in jsut our small group).

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