To take Humira or not

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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?

 

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  • Posted

    Hi Bill,  I have Ankylosing Spondylitis and Psoriatic arthritis. I'm turning 55 next month.  My story is similar to yours.  I'm HLA-B27 positive. I also have always been stiff my whole life.  Long story short, I was using Humira for about 4 years.  It did work for me!  I would get flare ups in my left hip, knee and ankle.  My back is very stiff but like you said not painful.  Well while on Humira I developed pulmonary embolisms.

    Those are blood clots that went to both of my lungs,multiple clots throughout both lungs. My rhuemy has kept me off Humira since.  It is now one of the rare side effects listed on Humira side effects.  It's been two years since the blood clots and I am not doing well.  My arthritis,especially my tendons in my ankle are enlarged and stiff.

     I can no longer flex my left foot.  After my blood clots my overall health has declined. I stopped working about 10 months ago d/t joint deterioration. If you have psoriasis you may have psoriatic arthritis too.  Anyhow that's my story with Humira.  Does it work- yes.  Is it risky- yes.

    Would I use it again?- no

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    • Posted

      Thanks Melanie, sorry to hear about your issues. Your reply was very helpful, as your symptoms are very similar to mine.

      I'll be waiting until I get my current lung issues diagnosed before I try Humira.

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    • Posted

      Hi Melanie,

      I just got out of the hospital with a pulmonary embolism. I had clots in both lungs. I 53 and fairly healthy. I have been diagnosed AS for 3 years. So I have been on Humira since diagnosis. 

      I have now been taken off of Humira and yesterday took my first dose of Cosentyx. I am hoping for the best. 

      From what I have read its a good medication and is supposed to work well. I will let you know the results.

      Take Care

      Cameron

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    • Posted

      Sorry to hear about your issues.

      Shortly after starting Humira I got a large bump on my wrist. I'm not exactly sure when, as it's obscured by my over-sized sports watch (not currently used :-)). The initial diagnosis was vascular, but it's a hard lump, how can it be vascular. So I went back to pester the doctor today, as I have enough unresolved issues. She has the brain wave that it could be a blood clot, so I have to go for a doppler.

      Nowhere close to your issue obviously, but it made me think about it.

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    • Posted

      Hi Plain Bill,

      Hopefully it's not a blood clot!  From what you've described it sounds like a cyst of some form.  Is it warm or painful?  I was in the medical field for 32 years until my arthritis

      became too difficult to work.  I was a Diagnostic Medical Sonographer, I used Ultrasound for all body parts except the heart.  I've seen many blood clots in arms.  But yours sounds

      like something else.....Let me know

      Take Care,

      Melanie

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    • Posted

      Thanks, the original guess by the walk-in doc was a cyst, but the ultra sound said it was vascular (whatever that means). You can see the large bulge in the vein on the US. It is not warm or sore, but definitely fairly firm. Odd place for a blood clot I agree.

      I have to go for several dopplers now to check all my parts, as I also have discolourations on my lower legs. Had them for years, but no other doctor would ever diagnose them.

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    • Posted

      Hi bill,  I didn't know the ultrasound already said it was vascular.

      that could mean a solid mass with vascular flow feeding it.

      let me know the official result

      thanx

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  • Posted

    Hi Bill,

    ​   Treatement for AS or related spondyloarthropathies is really all over the map.  A lot of AS treatment is simply trying to cover up symptoms.  The biologics, however, are at least an attempt at dealing with the underlying causality.  Humira is one of those biologics and many people with AS have gone that route.  Others include Remicade, Simponi and a few others.  There is also a newer one called Cosentyx which is supposedly the first of the biologics designed specifically for AS.  It targets a protein called IL-17A which is one of the potential causative agents in AS.  All biologics have their known side effects and you have to make the call as to cost-benefit.  My wife has been on Remicade for rheumatoid arthritis for over 13 years and it has her disease effectively in remission.  Not everyone gets that type of response, obviously.  My rheumy has talked about putting me on Cosentyx and I am seeing her in two days to make that decision.  I plan to give it a try if she is still of that mind and insurance agrees.  Hope whatever decision you make works for you.  Best of luck and sorry that you have to deal with this.  Its an ugly @$$#$ but we muddle along.

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    • Posted

      Thanks Peter,

      I'm going through the insurance/infectious disease testing now, so it will be about three months before I take any actual meds.

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  • Posted

    Like Melanie, I have AS and PsA. I was diagnosed 2 yrs. ago and was put on an antiobiotic and NSAID by a rheumatologist.  It put my arthritis into remission so said the doctor for about 3 months but then the CRP showed inflammation, again.  He wanted to put me on a different  antibiotic.  I stopped seeing him because I did t feel it was safe to be on antibiotics long term.  Plus, it was causing digestive problems.  I am going to see an herbalist.  I am already taking 1000 mg curcumin daily, which seems to lessen the stiffness, somewhat.  You are right...tendonitis goes along with our issues.  Try to exercise and move as much as possible.  I have seen a physical therapist, too, and regularly do the exercises, which help.  Swimming and water exercises are recommended.  Yoga tremendously keeps me limber.  To answer your question about Humira....I am trying to stay away from the DEMARDS and biologics used for treatment.   Good luck.
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    • Posted

      Thanks Yogee,

      I can no longer take NSAIDS, as only a high dose helps and my Kidneys are damaged.

      Apparantly I'm far too stiff for Yoga and I hate water; must be the cat in me. :-)

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    • Posted

      Please try Yin Yoga, it really really helps. I have struggled with yoga for so long it was one of the things that sent me to the doctor, for goodness sake I have practiced for years and don't get anywhere. But yin is amazing because it works on the fascia, you take it really slow have lots of props.  After a yin session is one of the few times I feel light and almost limber) and I have less pain and I sleep really well too.  I'm also finding out that taoist yoga is quite different, more flowing, using bended knees and rotational movements which are very good for helping joint mobility and also producing hyularonic acid in the body to moisturize the joints.

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  • Posted

    Hi Plain Bill.  I take low dose dexamethasone off and on to help with the stiffness and gabapentin which works well for the tendonitis, muscle cramping and helps me to sleep better.  I also started on Enbrel which has been helping with the flare ups I've been having in my hands and tailbone.

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    • Posted

      Thanks Gina,

      I was on Prednisone recently to see if it would help my breathing, but it made no difference. It did seem to help my shoulders a bit though. It's not a drug I would like to take long term anyway.

      Enbrel and Humira are very similar.

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