I have been experiencing pain in my neck shoulders and arms for almost 2 years. At one point well over a year ago, I upped my Prednisone from 10 mg to 20 mg on my doctor’s advice. It helped a little but not enough. I might have been wrong but I did not want to take any more Prednisone than the 20. I had a MRI ( which showed age related things) and was seen by an orthopedist, rheumatologist, PT and pain doctor and no one knew what to do with me. Of late, it has gotten to a point where my arms feel so heavy that it is difficult to lift them. I am wondering if anyone else has experienced this. I am at 10 1/2 mg ( down from 80 mg in 2020). Is this a flare and do I have to increase the Prednisone again? Or is this something else entirely?
Always appreciate your wise input and am very grateful for all of you.
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Miacaro45
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Hello. So 20mg didn’t help much. Have your symptoms got worse as you’ve reduced in step with that? The MRI may show age related things but it doesn’t mean those things will be symptom less especially over time. What were those things?
Is it safe to say that the symptoms are in your arms only?
Like SnazzyD I would ask - any other symptoms? As you were diagnosed with GCA, that would be first thought, as I guess was your doctors with increase to 20mg.
The fact is didn’t make a significant difference doesn’t necessarily rule that out….and although you don’t want to go higher, you may need to if it is your GCA grumbling. So think a bit more investigation required…to ascertain what it is.
There are some related post to look at, so see if any other them give any idea what yours may be.
Since you had a diagnosis of GCA - has anyone more recently done any scanning of your large arteries in the trunk, in particular the subclavian and brachial arteries? They can be affected by GCA and impaired blood flow in either or both is likely to cause arm symptoms. Normally doctors think in terms of subclavian artery stenosis but GCA inflammation can caused impaired blood flow that is not as extreme and cause less extreme symptoms. Both the subclavian and brachial arteries can be examined with ultrasound and the halo sign can be identified in GCA.
But in addition - the shoulder and neck muscles may be tight, even in spasm, and that can cause arm movement problems too. Myofascial release techniques and therapeutic massage can achieve a lot, as can use of muscle relaxants to soften the muscles up enough to be able to use physiotherapy to sort it all out. But you can't work with muscles that are tight and spasmed.
Thank you all for your insight. Yes, I now realize that my pain has gotten worse since I went from 20 mg to 10 1/2 mg. DorsetLady’s thoughts on the grumblings of GCA may be correct as I have noticed my head hurting from time to time( which is unusual). PMRPro’s thoughts on getting a scan is something I certainly would have never thought of.
I keep thanking my lucky stars that I found all of you.
I had those symptons as well as pelvic and leg/hip pain. I started at 40 mg and down to 4 but am getting shoulder/arm pain again. I am trying to live with it with Tylenol every other day. I have no plans to increase Prednisone. It is a common complaint with everyone I know. Everytime I go to dr for PMR they ask me to raise my arms. Tells you something
That they don't actually know what PMR is really like. Not being able to raise your arms is common in PMR but it isn't always a problem and it isn't an infallible test,
I share your symptoms. I also know that I get better relief of symptoms (but still not full remission) at 30mg than 20mg, which is unusual. I am now being investigated for autoimmune conditions that attack the nerves, rather than the muscles and/or blood vessels.
Ask you doctor to consider 1) neuro-muscular junction disorders (NMJDs), and 2) chronic inflammatory demyelinating polyneuropathies (CIDPs). Your GP can test your tendon reflexes (too much or too little response is a symptom), and also have cheap tests done for antibodies that attacks the nerves. Or they can refer you to a neurologist (nerve doctor).
Prednisolone is a frontline treatment for these rare diseases, but at much higher doses than the 20mg used for PMR: often 100mg or more. If confirmed, steroid-sparing alternatives are substituted.
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