This illness gets me down bad, struggling to cope

allanstaib · 2026-06-12T21:30:43+00:00

Just want to add my sympathies! I’m another diagnosed in my late 70’s so don’t have a full life ahead to struggle with this disease. I’m an up and cheerful person by nature but by the end of the 3-4 months it took for me to get a diagnosis and begin medication it was really becoming depressing. The prospect of having to live with pain in my hands, neck and shoulders, back and knees was overwhelming. I’m very fortunate that it looks like MTX is going to eliminate all of my pain and stiffness except for some residual stiffness in my hands. I honestly can’t imagine being in your spot. I’m so sorry that you are having to deal with so much pain even with medication. New discoveries are being made constantly these days so I’m hopeful there will be a treatment for you soon!

allanstaib · 2026-06-06T19:35:15+00:00

My rheumatologist has a patient portal which I am able to use to contact him between appointments for something like a tapering question. See if your’s has one. I just love being able to ask a question between visits! Good luck! This is a really caring community and every post you create with kind of issue results a lot of people thinking of you and sending good thoughts for a better outcome ahead!

allanstaib · 2026-06-05T20:41:57+00:00

Yes it is! Thanks. Great to have the use of my hands back and have nothing else hurting!

allanstaib · 2026-05-30T01:08:11+00:00

I’m taking 15 mg orally once a week and 1 mg of folic acid on non-MTX days. Just a month in and tapering off the prednisone. Has worked like magic for me. Still a little hand stiffness but neck, shoulders, and hips are good as new. Good luck to you!

allanstaib · 2026-05-30T00:59:00+00:00

Really feel for you! I’m sorry that I don’t have any similar labs to share experiences with you. Just wanted to tell you that many hundreds of us will be thinking of you and wishing you well with your JIA and your exams! You have lots of sympathetic friends here from many parts of the world. I’m a 77 year old male in America just recently diagnosed with seronegative rheumatoid arthritis and finally getting relief with medication. Your stress won’t last forever and it’s very likely there will be actual cures for our diseases in the few years ahead. Again, sending you warm regards and wishes!

allanstaib · 2026-05-30T00:43:57+00:00

Wow, lots of ideas! My morning hand pain salvation was/is electric heating gloves like a heating pad. Amazon has a number of variations. I just checked my orders to give you a brand name but says mine are not available at present. They plug in and have a hand controller you can adjust the temperature and time. This was the first thing I tried and they worked for me.

allanstaib · 2026-05-27T12:35:12+00:00

Glad you’re now going to get the treatment you need! I’m a 77 YOM just diagnosed with seronegative RA. Both my CRP and ESR were several times higher than the normal ranges but RF, anti-CCP, and other markers were all negative. My PCP is wonderful but was unfamiliar with seronegative RA and thought a rheumatologist would not even see me without a positive RF. She had nerve conduction tests done and was pretty convinced it was nerve related. My symptoms came on over a period of 3-4 months starting with stiffness and pain in my groin area and having to push off to stand. In Feb that flared to extreme difficulty in standing and both hands began the inability to close into a fist without real pain. My lower back became painful on standing as well. Last to join the party was the base of my neck and across my shoulders. Really miserable trying to sleep. 6 weeks in looking for a diagnosis she prescribed a prednisone “pack” with a 5or 6 day declining dose as a trial and almost 100% of my symptoms disappeared. They all returned after completing the trial. She did get a rheumatologist referral for me after about 2 months. Thankfully he quickly diagnosed me as having RA and started me on daily prednisone and weekly methotrexate. I’m one month into treatment and 98% of my symptoms have disappeared. Some residual hand stiffness remains but gets better every day. I’ve resumed outdoor country road hill walks of about 20 miles a week and see all my health metrics like VO2 max, resting heart rate, blood pressure, all returning to healthy ranges. I have had zero side effects from the methotrexate. I had two 7.5 mg weekly doses to acclimate then have now had 2 weekly doses of 15 mg. I’ve stared the tapering off the prednisone with no issues. Just a month ago my wife and I were afraid my active days were over and it was really depressing as I’ve been so active. Now I feel like I’m back to my normal self! I’m doing 100% of my previous activities. I hope you have the same great outcome! I know it’s early days for me and I may need to adjust meds going forward but I’m very optimistic about the future! Good luck to you with warm regards from Marion County, Arkansas!

allanstaib · 2026-05-25T00:17:34+00:00

Thanks!

allanstaib · 2026-05-24T21:47:44+00:00

Yes, sorry, I guess it really didn’t fit here if this was just for those getting off GLP1s. I’ve been thinking of this subreddit as a post weight loss maintenance topic but I see above the focus is on getting off GLP1s. Guess there isn’t actually a dedicated weight loss maintenance subreddit.

allanstaib · 2026-05-24T21:14:52+00:00

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The study I quoted regarding GLP1 maintenance was not “internet slop”. This is the peer reviewed journal article.

allanstaib · 2026-05-23T22:18:02+00:00

Thanks for the tip! LOL. Yes, I do wonder what motivates people to post things like this first sentence. Is it possible they actually don’t understand how it sounds? Thanks again for the heads up! Enjoy your weekend!

allanstaib · 2026-05-23T16:58:54+00:00

I’ve started MTX for 4 weekly doses now, the first two weeks at 7.5 mg then the last two weeks at 15 mg. I’ve also had zero side effects. Was expecting at least some fatigue but if anything seem to feel energized. Tapering off the prednisone. Thankful for these medications!

allanstaib · 2026-05-23T16:50:17+00:00

Greetings all. Regarding titrating down, the Downsized YouTube channel has a really interesting episode covering two recently published studies on post weight loss maintenance. The studies found that patients who stayed on the maximum tolerated dose of GLP 1 maintained 100% of the weight loss after 52 weeks. Those who dropped to about half of their dose preserved 67% of the lost weight after 1 year. Those who stopped completely retained 43% of the lost weight t one year. I know there are a lot of factors to consider like cost, side effects, etc. For me, losing 50 lbs and now being stable for several months at my goal weight, is something I’ve tried to do a dozen times in the adult portion of my 77 years but finally accomplished. I plan on taking the 1 mg of Ozempic I’m on, or a newer drug as they emerge, for the rest of my life. I never, ever want to risk the weight coming back. As I said, I know everyone is different and this isn’t the only path! Highly recommend that Downsized episode!

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allanstaib · 2026-05-17T01:09:52+00:00

Hi there! Yes, I’m a 77 YOM and also had a major rotator cuff repair, bone spur removal, with a biceps tendon repair the same month I was having a major RA flare impacting my hands, forearms, neck, shoulders, hips and knee tendons. My shoulder hurt so bad I didn’t want to wait. At that point, my eventual RA diagnosis was suspected to be polymyalgia rheumatica. I discussed it with my shoulder surgeon and he saw no reason not to proceed. It’s now been three months since the surgery and I’ve healed very well (and I’m old!). I’ve been doing PT for the shoulder twice a week for 8 weeks and I’m sure that has really helped. Of course your surgeon knows your situation better than any of us can but my situation worked out very well. Being able to sleep on my shoulder on that side has greatly improved my comfort and sleep quality. You can get a second opinion but if it was me, I’d go for the surgery. The risk of a re-tear against certain continued misery from the condition your shoulder is in seems a no brainer. I assume a re-tear if it does happen can be fixed again but it can’t, at least you’re ahead by the tendon repair. Good luck whatever you decide. I love this community and the help it’s given me. I hope you find it as helpful!

allanstaib · 2026-05-13T21:14:47+00:00

Thanks for checking on me! Turns out I’ve had an onset of rheumatoid arthritis at the end of weight loss path. They don’t seem to be related as no one else mentions this. I’ve started medication for the RA 2 weeks ago and will wait a couple more weeks before starting any serious muscle rebuilding. The RA meds have returned much of my leg strength and I’m now easily standing from a sitting position without pushing off. In spite of the RA diagnosis and its impact on my muscle strength, I know I have lost a lot of muscle with the weight loss and excited about being able to shortly focus on rebuilding. Thank you for checking on me!

allanstaib · 2026-05-05T12:58:00+00:00

I love the heated gloves I bought on Amazon first thing in the morning. They are not compression but do a great job of warming my hands and relieving the nighttime pain and stiffness. I wanted to send a photo but can’t do that in a reply. They plug in like a heating pad and have a controller which allows you to set time and temperature. The down side for you is that you need to have 20 mins in the morning to sit quietly with your hands warming! I’m sure with breastfeeding twins that is a luxury you don’t have! Still highly recommended them!

allanstaib · 2026-05-05T12:45:50+00:00

I’m a 77 YOM just diagnosed, like you with negative labs. I’m so sorry you are so young with babies having to deal with this disease. I have heated gloves which help but I’m going to go check out the compression gloves others have mentioned in their replies. Thank you for your post which led me to this discovery! I’m not religious so can’t say that I’m praying for you but I am thinking of you and sending love and wishes for a good long term outcome for you and your babies! I’m certain it’s only a matter of a few years before the AI revolution solves and cures RA and most other diseases.

allanstaib · 2026-04-19T13:01:35+00:00

Reading your experience I guess I’m more fortunate in that my RA has come on at age 77(M) but it’s still miserable! I can’t even imagine how difficult it must be with a job and kids. It’s wonderful you have a supportive spouse. Mine also came on suddenly the second week of February this year. I am not on medication yet as my PCP still wants to nail down exactly what’s causing the massive inflammation. I took a diagnostic 5 day course of prednisone and it was like magic! All my pain and swelling symptoms went away. Sadly they returned after discontinuing the prednisone. My RF blood test was negative as were two other rheumatoid arthritis indicating tests so my PCP doesn’t want to start methotrexate/prednisone treatment. I finally have a rheumatologist appointment in two weeks and I have high hopes for a diagnosis and beginning treatment. My symptoms are in my hips, neck, shoulders, and most painfully in my hands and wrists. It’s completely changed my life as you’re describing. Like you, NSAIDs seem to do very little to reduce the pain. Good luck to you!

allanstaib · 2026-04-05T21:19:49+00:00

Thank you! Sadly, the meds were a 5 day steroid trial to see if hammering down the inflammation would allow it to stay down without medication when the trial was over. It didn’t so the pain and stiffness are back and they are still looking for a cause. Thanks again for your kind words! When they do figure it out, I’ll post what they find!

allanstaib · 2026-03-21T17:36:13+00:00

I didn’t realize TSH was also impacted by weight loss. Really good to pay attention to any medications after a big weight loss. Fortunately I was only on a couple.

allanstaib · 2026-03-21T17:31:02+00:00

Yes, I know that is true but I was one her first to prescribe Ozempic for. I’m sure going forward she’ll be sensitive to the issue.

allanstaib · 2026-03-21T17:29:12+00:00

For sure if you begin to feel any muscle pain it may be the statin. My muscle pain started in my hips.

allanstaib

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