- Husband diagnosed with PMR in February, 2023, after a month (all of January) of sudden onset symptoms. Pain in shoulder, hips and much of it was migratory. His covid vaccine was in October, 2022, and do not know if this was a trigger.
- His General Practitioner very quickly did extensive tests (a Godsend) and forwarded to rheumatologist who he lucked out getting in to see initially, due to a cancellation. Wait times were generally 3 months to get in to rheumatologist.
- Rheumatologist initially said it was PMR.
- He is currently at 3mg Prednisone
- He is also currently taking Methrotrexate (MTX) - 2.5mg tablets x 5 = 12.5 every Monday
- Stiffness and achy in the morning. Difficulty bending down and impossible to get up from kneeling without assistance. Symptoms generally ease in the afternoon.
- Sometimes has taken 3 naps a day, but generally at least 1 nap per day.
- Rheumatologist said yesterday, that due to stiffness in his small joints - namely his fingers that he thinks it is now RA, since PMR is generally in the upper torso region and lower torso region, but not in the small joints. His knuckles are also somewhat swollen. Rheumatologist said treatment for PMR and RA are the same.
- Husband did a test after his diagnosis that showed he was negative for RA. Although, I understand, that you can have RA although you test negative. Doctor said he was in the 20%. (?)
- Rheumatologist said that he should now up his dose of MTX to 2.5 mg tablets x 6 = 15.0 mg every Monday.
- Rheumatologist also said he could bounce back and forth between his current dose of 3mg to 4mg and vice versa. For example: go up to 4mg for 2 weeks, then reduce to 3mg on the 3rd week.
- Due in 1 month to get bloodwork again for monitoring.
- Yesterday, he was told that he would be on MTX the rest of his life. Understandably, he was down about this. If the MTX wasn't working, he said he could prescribe Humira or Capzara (sp?) - but we think it appears to be working. He also said that he had not been on MTX long enough to see the full benefits. He has been on MTX for about 6 weeks to 8 weeks.
- In addition, the rheumatologist said he could take Ibuprofen or Tylenol/acetamenophin; however, his General Practitioner advised him not to take Ibuprofen due to it can cause problems with his other medicines.
Appreciate any thoughts, supreme knowledge😀 , and similar experiences. This forum is absolutely wonderful as we have learned so much through all of you.
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Andymegv
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"Pain in shoulder, hips and much of it was migratory"
If you mean what I think you mean - my immediate reaction was "Is this really PMR?". Something called palindromic rheumatism can present looking like PMR but usually later becomes more obviously the PR. There is someone on the form with PR - Theziggy It might be worth chatting about their experience. The symptoms of PR tend to move from joint to joint, PMR is mainly muscular and more widespread, it also doesn't come and go.
"Rheumatologist said treatment for PMR and RA are the same." - I beg to differ. The mainstay of management of PMR is corticosteroids. The mainstay of management of inflammatory arthritis of any sort is DMARDs, methotrexate being the primary option but it doesn't do much for most PMR patients - it does work for a small cohort who are possibly not suffering from PMR but an inflammatory arthritis. Or a different form of PMR.
Blowed if I can see any reason to jump around the dose of pred like that - what's his reasoning? Did he give any? The fatigue is the adrenal glands struggling to catch up - after a relatively short time on pred it should improve fairly quickly but it still takes time.
Thank you PMRpro. Given what you have said, I feel, (as the wife) that the rheumatologist cannot pinpoint whether it is PMR, RA or Inflammatory Arthritis, so the rheumy is throwing darts at the problems to see which treatment will help. Also think that the yo-yo dosing of the prednisone recommendation was due to husband feeling a bit worse after reducing down to 3mg prednisone. I was also puzzled at the recommendation of increasing the MTX dosage, which I also thought was due to him having a bit more symptoms. I also told husband to listen to his body! In addition, I have read to him what this forum has recommended on various related topics on his suspected condition, based upon posts from people such as yourself. I have found husband 2 doctors within the area, upon the recommendation from an inquiry to the Oklahoma Medical Research Foundation's (omrf.org) Executive Vice President & Chief Medical Officer, Professor and Program Chair of the Arthritis & Clinical Immunology Research Program. The OMRF does biomedical research and also treats many autoimmune disorders, such as lupus and MS, but does not treat PMR. These recommended doctors do have a history of treating PMR, now it is up to him to proceed. Simple in my mind to go get a 2nd opinion, but I'm trying to lay the bread crumbs on the ground for him to follow the bread crumbs. Some folks take longer and I am not having the symptoms, even though I hear about them!
Ah yes, the stabs in the dark. It is excusable - there are no definitive markers for any of them in the older patient - but not a happy place for the patient. Dear me - he seems to have a crystal ball and we know they never work well. Your husband MAY be on MTX for the rest of his life but that is by no means certain - so he shouldn't say it. It must show it works for a start and then it must continue to work without the patients having intolerable adverse effects - and in fact, about a third of patient come under either of those codicils and stop.
You’re swell, PMRpro! I can assure you I am digging through the posts. and printing them as I find them. Pretty much have worked on the hubby who seems to agree he needs a 2nd opinion from one of the 2 doctors. Progress is slow, but moving forward! Thank you so much.
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