PMR with hand/wrist pain and swollen veins?
Hi, I've been struggling with PMR since May '22. Most of my symptoms are typical though apparently unusually stubborn; I'm currently on 40mg/day prednisone and hoping to begin a taper soon. (I started out at 20mg but nothing touched the flare til they bumped me up to 40) One uncommon symptom is severe pain in my wrist/hand, and when it's particularly bad the veins in my hand, wrist, and lower arm get very large. Has anyone else experienced this? It's kind of freaking me out.
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Thats exactly what happened to me. Hips thighs, then shoulders upper arms, and then on to hands. I would get tingling at night like they were "going to sleep." Had to sit up a lot. Still having general problems 3 years later but the hands are fine. Like you say, the pain in manageable.
Mind you...I am no doctor! I speak to you as another 82 year old and am going to share my rheumy's thoughts. I was finally diagnosed with GCA in 2019. Presently I am on 3 mg daily plus Actemra weekly painless injections.
I never got down to single digits until this year and that was at a prescribed reduction rate of .5mg per month. I do think most of the body 'miseries' are already done to my body after high doses like 80,60,40,15-----for all this time.
We are all unique I know~~so I hope your taper goes well, but personally I wouldn't care if I remained on a low dosage. I have a friend in NH who has been on 1mg for 23 year, feels fine, but cannot go without it. There is a well know rheumatologist in England, Dr. Dasgupta, who believes in keeping patients on a 2-3 mg dosage. Of course, -0- is best but I've always felt my quality of life meant more, especially soon to be 83.
I wonder what Mayo's opinion is about long term maintenance dosage? My best to you~💞
As you say, we’re all unique in the ways PMR afflicts us. I have been off Prednisolone now for a month - after a 16 month taper from 15mg daily. But my case is unusual. Estimating degrees of pain is a matter of subjective impression and subject to the vagaries of memory but in my experience Pred has had little or no effect in moderating pain levels. The only apparent effect of cessation is elimination of symptoms induced by the drug. No signs of RA. Pain levels (which are manageable with exercise and occasional analgesics) are much the same as they were at the beginning. (Bearable - not agonising) But I am better now at managing them. As I’ve remarked elsewhere, you start to wonder if it’s PMR you’ve got, if Pred doesn’t help - though all the other symptoms match.
My experience is very similar. I was diagnosed with PM R in 2016. On prednisone for 18 months. Then total remission until about 2 months ago. Pain in shoulder, back, sometimes hips, and hands. Hands tingle in the morning and at night. Markers were high first round but normal this time. Prednisone helped dramatically first time, this time only moderately. I’m not taking it now. I have developed large painful nodules on the knuckles below the index finger. Not sure what to do next. Starting PT next week. Prayers for everyone.
In my first episode of PMR I noticed swelling in my toes as well as pain in my knees and arms. Since then, I have also had bouts of pmr where my wrists and hands were painful. Nearly every joint in my body has experiences pain and stiffness at one time or another during PMR flare ups. The worst symptoms for me, however, are the fatigue, lethargy and stiffness I feel when I am usually a very busy active person.
As I taper down the prednisone, (was at 1 mg but have had to go back up to 2 due to increase in hip and shoulder pain/stiffness)
the fatigue and lethargy are really bothersome. I am adding caffeine back on days when I need to have some energy in the afternoon. It helps some.
I have always had large veins on my arm and hands and have noticed they seem even larger since being on prednisone. In fact, my husband commented on it today as the veins were particularly enlarged. No pain - just seems to be the way it is for me. Good luck!
Had PMR since March of 23, currently on 12.5 prednisone. At first my legs hips had extreme pain, then my shoulders down my arms. Currently it’s just my hands and wrists in the morning, goes slightly away in a couple hours. no vein swelling and never had RA.
Most patients with PMR are on prednisone for extended periods. Prednisone often causes skin
atrophy and thinning of our subcutaneous fat.
This could cause your veins to appear more apparent.
Do you have any bruising or fragility? Mine evolved after
prednisone.
I have had PMR for 6 years tapering prednisone to 2 mg daily. I know have been diagnosed with degenerative osteoarthritis in my hands. Are there treatments for this? Thank you, phy