I’m T1D, have hypothyroidism, and rheumatoid arthritis. The one that is currently giving me the most trouble is RA. I’m interested in anyone else’s experiences with RA.
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My daughter who is 6 has it. For us the medicine is the hard part. We inject methotrexate through a large needle into her leg weekly, she screams and cries, we bribe her with everything and anything, 6 hours after injection she feels very sick, sometimes vomits, it continues for the next day. She refuses zofran. So she just deals by eating a ton of food to ward of the naseau. So lots of insulin. There is only one other med she can take at her age, and that is Humira. It comes with it’s own risks. Good news is she doesnt have much joint pain at all, so it seems to be working. Just wish it didnt have all these side effects. The next few days are tough after Methotexate. Blood sugar seems to be higher because of it. It not an easy disease. Sorry you have it too.
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I’m so sorry your daughter has both T1 and RA. Both are difficult to deal with. At least the medicine (insulin) for diabetes doesn’t have side effects. I know what you mean about the drugs for RA. I took hydroxychloroquine for 20 years and it caused retinal toxicity in my eyes, so I had to stop taking it. Now I’m taking Arava, a pill everyday, but it has the stomach side effects, nausea, stomach pain, and diarrhea. I hate feeling sick all the time. They told me to drink a lot of water to help with the nausea. I don’t know if it really helps or not. Tell your daughter I hope she feels better soon.
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Thank you Jan! I am so sorry you have had bad luck with medicine also. Yes, I can see how lots of water could help since I think the medicines are excreted through the urine. My daughter was told.to take folic acid every day to help with the stomach side effects, but she refuses to swallow pills, and we have tried everything, so we just don’t take it. I have read a lot of people, the main side effect is feeling sick. Ugh! We tried to wean her off the methotrexate since she has.not had any joint pain for a while, but then she got Uvitis( inflammation in the eyes) so then we had to increase her dose. You are in my thoughts! I know it’s not easy.
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I wouldn’t take pills when I was her age either. My mom would crush them up and mix them in applesauce, and then I could take them. I hadn’t heard about the folic acid, I’ll have to try it. Thanks for the tip.
My non-D friend found a significant reduction in her RA symptoms after she decided to go gluten- and dairy-free. Something to consider?
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I have reasonably active psoriatic arthritis and it responds brilliantly to a Rheum Arthritis med - Xeljanz or tofecitinib. No surgeries for completely stenosed tendons in a couple of years now. I feel very lucky that I don’t have RA, as mostly I am very functional (with Xeljanz and NSAIDs). I play music and practice martial arts, but had to give up iaido or Japanese swordsmanship after a wrist reconstruction that the surgeon was a bit worried about.
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@Morrisminor72
I’m glad to hear that you’ve found a med that works for you. That seems to be the hardest part. May I ask how long you’ve had psoriatic arthritis?
I can’t take NSAIDS anymore as I have some kidney damage (after taking them for 20 years). I’m getting along now without any pain meds.
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I have had pretty bad tendon issues since childhood, so it is likely a lifelong thing. It got a lot worse at adolescence, and I have a flare whenever I have a new injury. I was diagnosed at age 35 officially, after a very classic presentation of fat, sore, red fingers. I was working as a trainee Obstetrician at the time, and found operating very challenging (5 Caesareans in one night had me unable to hold my coffee cup). I started some DMARDS at the time, and got a remission after 6 months, and then nothing much for 10 years, but by then I had ditched obstetrics as a career and gone to retrieval medicine. Then I broke a finger and had to have 3 pins inserted, and have not really had a full remission since. But Xeljanz over the past 4 years has been a lifesaver. I can occasionally go without NSAIDs, but not often. Thankfully my kidneys are still delightful after 42 years of T1. I am lucky. I only take Ibuprofen, which is cleared more quickly than some, and I only ever take it once a day.
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My heart goes out to the leetle one. I’m almost 59 now but was Dx’d at 9. Back then it was pretty much gold shots, methotrexate & prednisone. Everything else was pretty much experimental.
My case was revealed when i had a problem in my left knee. My entire medial condile(sp?) was just gone. Original Dx was osteo condritisdessecans (again sp). Was referred to Children’s Hospital from Sansum Clinic ca 1970 because they weren’t fully sold on their Dx. Took a long while for Children’s Hosp to get to the RA Dx because I’m noninflammatory, zero-negative etc…was put in full leg cast for 10 months with crutches for 14 months. Neat side effect was i built up a really strong upper body.
I had no probs trying any meds. Unfortunately none did anything but make me queasy. Ended up setting on palliative pain relief.
Today i have no correlation between my T2 & the RA. Despite getting my daily number to the 4.9-6.1 range, mostly thanks to constantly feedback from my Dexcom G5…
hopefully her RA will go into remission soon. Mine did when i hit about 13-14 through puberty through my early 20s.
I know swimming helped me a lot as soon as i got out of the cast. Was in the pool almost every day. I believe in non-resistive/weight bearing exercise for people with RA. I know how it helped me. I also walked 20-30mi/week back the too.
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I don’t have RA. Have you tried acupuncture? Acupuncturist vary greatly. Some are charlatans and quacks. Many years ago, I had chronic sinusitis. The acupuncturist really helped.
Reducing or eliminating certain foods may help.
Several years ago, I thought that I had celiac (stomach ache). This was combined with stiffness in my joints. I was eating a lot of white bread. I was tested for celiac. The test result was negative. I stopped eating the white bread. I felt much better. The stomach ache stopped. The stiffness in the joint disappeared.
More recently, I’ve been eating quinoa as my main source of carbohydrate and have been feeling pretty good.
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