Just not very good

I am 31 and was diagnosed with JIA at 2. I still have JIA as it hasn't gone or progressed into Stills, and is different from RA. I was put on biologics for the seciond time recently. I had an allergic reaction - a swelling in the site, pain, tightness and heat. I went to my rheumy - who asked me to do it again 'just to make sure'. The same thing happened again, but much much worse, ending up with me in hospital. Today my called it medically inflicted self harm. I am exhausted, teary and utterly fed up. My GP has suggested that I try and find a support group, more aimed at general fatigue and being fed up with a chronic illness rather than RA or JIA specific. Don't really know where to start. I am not able to work very much due to exhaustion, I feel like a waste of space. Sorry for the pity party.x

12 Replies

  • Welcome! I'm glad you've found us. We are a very supportive group of people and understand what you've been going through.

  • Hi MissChloeScarlet, i have JIA as well. I'm 35 but was diagnosed when I was 14. When I started my third biologic (tocilizumab) I had some pretty bad injection site reactions but they did calm down after about 3 months. I started taking a benedryl before injecting and we found if I do it in my leg the reaction is worse than in my stomach. Have they said if you will keep having it or are they going to try another one? Also make sure you are sleeping when your body wants it. Even if it means most of the day. Are your work supportive? X

  • They've taken me off straight away, I ended up in IV antibiotics. I am starting Humira tomorrow. The reaction was to Benapali. Work are great, as is my husband, it's just so frustrating. Hope you're ok today x

  • I'm glad they are giving you a different one. I've been on enbrel (benpali is the cheaper version) which lasted 2 1/2 years, then Humira for 4 1/2 years and now I'm on tocilizumab. They all worked great for me but my body'simmune system fought back against the anti tnf and built an immunity which resulted in a massive flare last year. My work were great, especially as I hadn't worked for them for a year by then. Luckily the tocilizumab is working great for me. I work full time as a Reception Teacher which is knackering in itself without the fatigue on top. I hope the Humira works for you. Good luck!

  • I am a teacher too, but can't work full time anymore. Fingers crossed!

  • Change your doctor! I was dx age 6 with Stills in 1971, they didn't call it JIA those days, but do call it RA now. Some doctors just don't know enough about the disease. I prefer the old school rheumatologists, biologics didn't work for me, I've taken MTX for over 30 years and can't find anything better. Hope you find better doctors and drugs.

  • She is the best doctor I've had actually. And usually treats me like a person rather than a number. Think this was sadly the protocol coming before the patient, but I think she's learnt!

  • Hi.. I have JIA too. I wasn't diagnosed at the time, it was 10 years later that I found out what I was dealing with. I suffer with exhaustion too. Saw my rheumy last week who advised taking afternoon rests. I explained that I can't during the week as I work full time. I am reducing my days to 4 so that my body has a chance. Is your employer supportive? Maybe flexible working could be worth considering if they offer it. Hope you have a better day ☺️

  • I work one day a work minimum and the more as and when I am well enough, they're really good, but I have just qualified in another role so it will have to change soon!

  • What?!? "medically inflicted self harm"? How can that be when you are following doctors directions? That makes no sense. It sounds to me, in my limited knowledge, that you need a new GP. That one sounds like and @$$***e

  • It was pretty spot on actually. I did self harm, at the instruction of my consultant. I knew what was going to happen but my rheumy said she needed to make sure.

  • Ahhh - I get it, but I still think it is pretty harsh... :-(

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