1. Community
  2. Bones, joints and muscles
  3. Ankylosing Spondylitis

To take Humira or not

Posted , 9 users are following.

Plain_Bill
Plain_Bill

I got diagnosed with AS about 4 years ago, I'm 56 now. I've been extremely stiff for years and had bouts of debilitating back pain/sciatica in my early 30s, but was never diagnosed.

I was seeing a Physiotherapist for a few years and she said there is something seriously wrong with your body. I get that a lot from women. LOL.So I went to see my GP who sent me for an ultrasound of my kidney. I bolted to the walk-in where I found a very good and kind GP who tested for everything from Cat Scratch fever to HLAB27. Well the HLAB27 came back positive and my journey through Rheumotology land began.

Rheumy #1 had 0 bedside manner and did not believe I had AS, until they had x-rayed/MRI'd everything and I failed the flexibility tests miserably. She was big on pushing Humira, even though I had no active inflammation and I have not suffered any pain in years.

Rheumy #2 was very well respected, but a complete flake. He was tried to tell me I had enlarged tendons; of course I do, I work out to keep the pain at bay. I still felt pretty good at this point.

The last couple of years other body parts have started to bother me, knees, shoulders, lungs. It's mostly tendonitis that's getting to me, which I understand can be an AS side effect. I have no idea if the breathing issues are related and neither does anyone else. My latest inflammatory markers are still quite low. But the x-rays from Rheumy #3 show my mid back heavily calcified, which explains the worsening stiffness. But my HLAB27 came back negative this time. WTF.

So based on the x-rays they want to put me on Humira. I asked about the benefits and they said pain relief and I would feel better. But I've never had much pain since my 30s and my inflammatory markers are low. But the spread of my fusing vertebrae is concerning, along with the other possibly related body issues. I would love some relief from the stiffness, but my understanding is that there is no reversing the current state of my diseaase. Not to mention the laundry list of Humira side effects.

Any thoughts?

 

0 likes, 21 replies

21 Replies

Prev
  • Plain_Bill
    Plain_Bill

    Posted

    I finally got the results of my chest xray today and I have Basilar Atelectasis (collapsing lung). A quick Google of this seems to indicate that it could be related to the AS.

    Anyone have any experience with this, what did you do for it? This seems to have worsened since I stopped my Cardio due to my knees.

  • Plain_Bill
    Plain_Bill

    Posted

    OK I took my first dose of Humira on Friday. The good news is that I did not have any unpleasant side effects, not even injection site redness. Early days I know. I could feel my body reacting too it, but did not have any miracles.

    I think the stiffness is a little better, my knee pain is slowly easing and the mid back pain that I was getting in the morning seems to be getting less. The odd thing is that the unrelated symptoms seem to be most affected. I was having trouble breathing, especially after eating a large meal and my abdomen was distended. After the Humira my stools seem better and the distension seems to be less too, although I'm trying to eat smaller meals.

    According to my GI, I had gastritis and diverticuosis, nothing that should have improved with the Humira.

  • hickory
    hickory Plain_Bill

    Posted

    Hi Bill. Sorry for your constant pain. I`m 66 and never even heard of AS until I was in my early 60`s. I`ve had two back ops before I they knew what it was. I started on Remacade but had a reaction to the drug and then went on Humira. After  months on the drug with no pain relief I went to see a pain management doctor. Naturally he put me on Oxycotton. I even tried Pot,which was good but didn`t last s long as the Oxi. which I hate taking. Humira did help with the Plack Soriaciss (sp.............. never good at spelling) but not much in reducing back pain.

    The AS is now afffecting my breathing, as my ribs hurt with every chest expansion. I do exercise by walking but now my hips are giving me problems. 

    I see both my Rummy and my Pain Drs. this week. My opinion of Humira is not very good and hope to change meds. I doubt I was much help and wish you the best.

     

  • hickory
    hickory Plain_Bill

    Posted

    Bill forgot to tell you I also had 2 epadurals, one in my neck and one in my back.............nothing
    • Plain_Bill
      Plain_Bill hickory

      Posted

      Thanks Hickory,

      Humira has not done much so me so far, perhaps a bit less stiffness. Even the positive effect on my stools seems to be wearing off. No idea why it helped in the first place, as I don't have Crohn's. Some other undiagnosed aspect I guess or just a coincidence.

      I had serious back issues in my early 30s, I pretty much could not walk for 2 years and lived on muscle relaxants, NSAIDS and pain killers. The AS did not get diagnosed until 20 years later.

Back to top
Prev

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community 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 community 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.