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Training while taking Humira for Ankylosing Spondylitis

vel0vel0 Posts: 12
Hey

I'm about to start a course of the drug Humira, for treatment of Ankylosing Spondylitis, a form of arthritis that affects the spine. My symptoms are mainly back pain, fatigue, and Sacroiliitis, which seems to be specifically aggravated by cycling. After 3 years using diet, physio, and ibuprofen to control the pain, I am trying Humira, which is a 'TNF blocker' - a biological drug, that works by suppressing the immune system and preventing the body from attacking itself (this is a very basic summation).

I'm keen to hear from anyone who is using Humira and doing a lot of training, specifically cycling, as I was planning to race this year, and am keen for as much info as possible about the interactions between training, recovery, and the drug. I've not found much info elsewhere, and my rheumatologist was open about her lack of knowledge in this specific area. My concern, based on a rudimentary layman's understanding of the issues, is that the suppressed immune system will hamper my body's capacity for muscle rebuilding and general recovery. But I have no evidence for this.

Anyway - would be massively grateful for any insights. Would also love to hear from any other cyclists with AS.

Cheers

Charlie

Posts

  • tonysjtonysj Posts: 354
    Charlie,

    Sorry to hear about your troubles mate.

    I was taking Humira, Adalimumab, 1 injection every 2 weeks into the abdomen for 1 year but not for you illness I was suffering from Crohn's disease and similarly the drug was to suppress my immune system as my body was causing the Crohn's to flair up more often as it was fighting the condition.

    I wasn't cycling much but was going to the gym and exercising regularly as this helped me a lot to deal with the Crohn's plus diet etc.
    Mate I cannot comment on your desire to race and push your self as I was only just keeping my level of fitness at a reasonable level so cannot offer any advice but if it was me I would go for it and see how your body reacts, you will know if its not suitable.

    You could try BC or other cycling organisation and ask them if they are aware of any cyclist, Pro or other, who is using Humira or has done due to their condition, like I say I was using it for a totally different illness so you never know there could be someone who has already gone through the issues you want answers to.

    Good luck mate and as I always say Don't let anything hold you back just go for it!

    Regards.

    Tony.
  • vel0vel0 Posts: 12
    tonysj wrote:
    Charlie,

    Sorry to hear about your troubles mate.

    I was taking Humira, Adalimumab, 1 injection every 2 weeks into the abdomen for 1 year but not for you illness I was suffering from Crohn's disease and similarly the drug was to suppress my immune system as my body was causing the Crohn's to flair up more often as it was fighting the condition.

    I wasn't cycling much but was going to the gym and exercising regularly as this helped me a lot to deal with the Crohn's plus diet etc.
    Mate I cannot comment on your desire to race and push your self as I was only just keeping my level of fitness at a reasonable level so cannot offer any advice but if it was me I would go for it and see how your body reacts, you will know if its not suitable.

    You could try BC or other cycling organisation and ask them if they are aware of any cyclist, Pro or other, who is using Humira or has done due to their condition, like I say I was using it for a totally different illness so you never know there could be someone who has already gone through the issues you want answers to.

    Good luck mate and as I always say Don't let anything hold you back just go for it!

    Regards.

    Tony.

    thanks so much Tony! Really good advice about contacting BC - will do that.

    Did you have a good experience generally with the Humira?

    Hope the Crohn's disease has cleared up as much as possible and you're able to push yourself also!

    Charlie
  • twotoebennytwotoebenny Posts: 924
    I've never had Humira but as above various other immunosuppressants for Crohn's disease. My disease has never been under control and I've had plenty of flairs. I done a little racing last year and some TTs over the last few years. Managed a few PBs etc.

    Sometimes I think that I've pushed too much and my body can't/won't take the training but I actually feel that exercise and cycling in particular helps me.
    I'm not sure there's much out there, but the key point for me is that we are all different. If the Humira works you probably should be able to do some racing and training. Your body will ultimately tell you what you can and cannot do.

    It's actually "nice" (probably not the best choice of words) to read there are others out there with similar conditions. Feel free to DM/keep in touch/ask questions. Maybe we could arrange an immunosuppressed ride :lol:
  • tonysjtonysj Posts: 354
    Charlie.
    The Humira was a trail for 1 year to see if it suited me and if my body developed the replication of other chemicals that would assist in the control of my Crohn's. I had a blood test near the end of the trail as a single injection was in the region of £200 a throw and it has done nothing in addressing the desires outcome so I simply came off it.
    Mate I don't compete as I'm fairly new to road cycling but for my age 55yrs and following major surgery to have part of my intestinal tract removed I completed my 1st spotive on Saturday gone. York-Leeds-York 64 miler and loved it.
    I only have the occasional flair up since the ok but like I said and twotoebenny Just don't let it hold you back.
    Regards.
    Tony.
  • twotoebennytwotoebenny Posts: 924
    Tony, good to see it's not holding you back/preventing you from cycling, I've got surgery lurking and one thing that I can't get my head round is the possibility of not cycling again... sounds daft in the grand scheme of things doesn't it!
  • vel0vel0 Posts: 12
    Tony - thanks for the info and glad to hear you enjoyed the sportive. 64 miles is a beast! In addition to the AS stuff I also had a hip arthroscopy last summer and am just about getting back to former fitness - first 100k in a year at the weekend. Never enjoyed cycling in the pissing rain so much.

    TwoTowBenny - thanks mate, appreciate the feedback. Weirdly hard to come by any info relating to fitness and autoimmune drugs.

    Yep definitely good to hear others' stories. Nice one.
  • shazzzshazzz Posts: 1,071
    I've not taken Humira for any extended period and am no doctor, but......
    I have taken plenty of Prednisolone, which is also an autoimmune drug (steroid for treating inflammatory conditions, autoimmune disorders - including arthritis, crohns, colitis, ....). I carried on training when I was on Pred, as have a number of professional cyclists (allegedly...). Advice from my doctor was to be more careful about responding to symptoms of regular illness (eg rest if you think you're getting a cold) but otherwise crack on as usual. I had colitis, not arthritis.
    As well as the advice about contacting BC, you may also want to try some of the organisations who help patients of other diseases that are treated with Humira, eg Crohns and Colitis UK. They may have advice / be able to put you in touch with someone, although there is no replacement for your own consultant's advice.
  • vel0vel0 Posts: 12
    shazzz wrote:
    I've not taken Humira for any extended period and am no doctor, but......
    I have taken plenty of Prednisolone, which is also an autoimmune drug (steroid for treating inflammatory conditions, autoimmune disorders - including arthritis, crohns, colitis, ....). I carried on training when I was on Pred, as have a number of professional cyclists (allegedly...). Advice from my doctor was to be more careful about responding to symptoms of regular illness (eg rest if you think you're getting a cold) but otherwise crack on as usual. I had colitis, not arthritis.
    As well as the advice about contacting BC, you may also want to try some of the organisations who help patients of other diseases that are treated with Humira, eg Crohns and Colitis UK. They may have advice / be able to put you in touch with someone, although there is no replacement for your own consultant's advice.

    Thanks Shazzz. I actually had a steroid injection (corticosteroid) in my sacroilliac at Christmas (present from the NHS) which reduced post-cycle pain but wore off after a few weeks, hence speaking to my rheumatologist about Humira. Also I don't think you need a TUE for Humira, ho ho.

    I've contacted BC. Also gave NASS a shout, and will contact the orgs you mention.

    My Rheumy gave me similar advice to your doc - essentially, just crack on but take care / go to hospital if you get ill. She said she's been prescribing humira for 18 years with a good success rate. A handful of allergic reactions but mostly positive. One of her patients runs marathons and has no issues with the medication. I'd just like to not be in pain for a bit... it is pretty boring after a while! If I'm gonna be in pain I'd rather it was lovely cycling pain that I'm self-inflicting in the pursuit of wattage bazookas etc.

    :)
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