Up, Down or Sideways ???

[MikeVanBC]

Hello Kind Folks,

To provide a brief update, since diagnosis on April 26th I’ve increased my Pred dose from 15 to 20mg given I’m 185 lbs. I guestimate an 80% improvement because I can walk again and finally put on my own socks!

Lower body from chest down is essentially pain-free. Right shoulder remains tortuous, and I can’t lift that arm. Neck and left arm are sometimes stiff and painful, but it’s the right side that’s of concern. Of course, wouldn’t you know it, I’m right-handed, so there are all kinds of actions that trigger pain or discomfort.

Given there have been so many improvements elsewhere, I’d appreciate opinions as to whether I should stick with 20mg and hope the right shoulder/arm has gradual improvement, or boost a further 2.5-5mg in the hope that may settle it down?

I know all increases will later need to be reduced gradually, so I’m torn between accepting some degree of painful discomfort and seeking to at least temporarily vanquish the villain.

I’ve seen a few references to finding the med dose that provides a 70% improvement, and I am thankful to have achieved a higher threshold, but that may in part be because I was so severely overwhelmed to the extent I could barely move.

The strange thing with the right shoulder and arm is that it can be more painful some days than others, to the extent it’s too acute to sleep. Today is one of those days. It’s like that old saying, Cheer up, things could be worse. So I cheered up, and sure enough, things got worse.

Yesterday I had an X-ray and ultrasound, to see if there’s something else going on with this right shoulder, and should have a report in a few days. If there’s no sign of some other problem, do you think it’s worth trying to up my pred to try and settle it down, or just accept that I won’t be able to win at Wimbledon any day soon?

And one other question: is it normal with PMR or on prednisone to perspire profusely when on a 3km outdoor walk? My pace is much slower than pre-PMR, yet my shirt gets more soaked than it did when I was previously much more active.

[PMRpro Ambassador]

As I said on the other thread, I suspect this is not entirely "just" PMR - it is your dominant arm, I bet you use it a fair bit and probably more than you should, especially if there is any damage there. If you have achieved the 70% improvement I think it is probably better to be patient and certainly wait to see if they find any damage there. If there is soft tissue damage then more pred isn't going to help that in the medium to longer term.

It is possible that you have myofascial pain sydrome affecting that set of muscles - caused by the same inflammatory substances as PMR except in MPS they are localised in trigger points in large muscles rather than being systemic. Pred does help some - but you need a lot of oral pred and locally applied techniques are often more effective.

[LindaB-66 in reply to PMRpro]

Could it perhaps be a Bursitis on his shoulder? I had same symptoms and that was diagnosed so ended up getting steroid injections in shoulder which helped a lot.

[PMRpro Ambassador in reply to LindaB-66]

Possibly - but whatever it is - it needs to be properly diagnosed and then dealt with appropriately. Targeted steroids as injections means a lot less steroid overall.

[Seacat30]

My persistently painful right shoulder turned out to have a partly torn tendon. This did not show up on an ultrasound carried out soon after diagnosis but did on an MRI 6 months later. (The result of struggling to live with PMR but not PMR itself?)

[Seacat30]

Both PMR and prednisolone can cause sweating. I think that I sweat more than I once did not not as much as when first diagnosed with PMR and on higher dosage.

[jinasc]

Have you looked up Rotator Cuff Injury...............could be..........

AS PMRpro has said, be patient and wait.

[DorsetLady PMRGCAuk volunteer]

As promised from previous post for completeness-

I would think there has more going on with shoulder (tell me about it!) .

If it varies a bit day to day, have you done extra the previous day or two..doesn’t take much for it to complain.

You could try painkillers (not ibruprofen) or topical gel on the days it’s bad, and see if there’s any relief. If so, probably suggests other things, if not, likely to be PMR…

Then you can decide if you need to up Pred.

Do empathise about the no sleeping -been there pre GCA diagnosis -and post with OA - replacement shoulder 2 years ago - so now not an issue. But I do remember it well.

Hope you soon get answers

Agree with jinasc re rotator cuff -

mayoclinic.org/diseases-con...

[piglette]

I perspire profusely without the 3km walk. I tell people I have been swimming.

[MikeVanBC in reply to piglette]

Good story Piglette 👍 but how do you explain your hair’s dry? 😜

[piglette in reply to MikeVanBC]

My hair is not dry, it is soaking wet from sweat caused by the steroids.

[LBM1953]

I started on 15mg No help. 20mg got me 16 hours or so of relief. 25 mg was heaven! Shoulder problems never went away fully though so doctor put me on 30 mg to try and kill it all. Shoulders still same. Now on 5 mg. Shoulders still a niggle but l am putting up with it as I do not want to increase the pred. I can do most things, I just (sort of) grin and bear it!!

[DorsetLady PMRGCAuk volunteer in reply to LBM1953]

Has anything else been considered for shoulders? Or is it assumed PMR as it’s bilateral pain, and so no further investigation.

I hope GCA has been considered.

[Exflex]

Have similar and it was me who started “the other thread”. Does the unilateral discomfort/pain ease with paracetamol and do you get further improvement when NSAIDs ?(Cardiologist I was seeing for the heart issue said prolonged use ~5years elevates risk, but short term NSAID is ok).

I was using EC Pred and have now switched to plain and I feel there’s an improvement.

[MikeVanBC in reply to Exflex]

Not a noticeable change with Tylenol, and trying to avoid it and Advil. The very best short term solution I’ve found during all of this is crawling into our hot tub. Even when the full-blown PMR hit, and I could barely move without major pain, submersion in the hot tub or hot bath with Epsom salts offered instant relief. The only downside was that I couldn’t stay there all day!

[PMRCanada in reply to MikeVanBC]

I discovered that soaking in a hot tub provided relief from my PMR symptoms while on vacation at a resort in Mexico. Our hot tub “died” 2 years ago, but we dream of getting another one.

I still perspire at about 4am in the morning (back of neck and cleavage) which ends within a few hours. Seems to happen when I’m waiting for pred to kick in at that time. No physical exertion involved.

I do hope the test results will provide some clues as to your shoulder issues. My husband really struggled with both his shoulders last year, and an MRI revealed small tears, a bit of arthritis, but GP mentioned years of lifting weights has taken its toll. No surgery options, just occasional pain medications and laying/sleeping on his back only. He suffers if he lifts any weight above his shoulder height.

Hope you get some pain relief soon, and I’d push for an MRI if the X-ray and ultrasound don’t reveal anything yet you continue to experience painful symptoms. Without proper rest and with ongoing pain I fear you need some answers sooner than later. As far as putting pred dose up once more, best you discuss that with your medical team. Keep us updated.

[MikeVanBC in reply to PMRCanada]

My wife is convinced that the hot tub is the best single investment we ever made. I can’t imagine going without it. We use it every day, and I’ve used it multiple times daily with PMR. We keep it at a high temp we’ve been accustomed to for decades, and find it is better than almost any medication. During my initial flare I’d crawl into the tub at any time day or night, and after a 10-minute poach be able to finally get some sleep. I wouldn’t even dry off (in part because it was too painful to use a towel properly) but instead just wear a robe or have towels on my sheets. I used it that way again last night to get relief from my throbbing shoulder. I assume it stimulates circulation enough to mitigate, and/or the temperature helps relax the muscles. We don’t use the hot tub jets much. It’s just the immersion that is so relieving.

[PMRCanada in reply to MikeVanBC]

So glad you both enjoy it and it provides you relief!! Soaking sure helped me, especially in the early days prior to diagnosis and as I tapered.

We’ve investigated and can get a refurbished one for about $4500. with a two tear parts and labour warranty. Just waiting for the lotto numbers to align.

[LBM1953]

I saw a rheumy in October last year and told her and she took me through a range of exercise moves. She signed me off! I have a full range of movement it's just a niggle or two. Last week I felt OK enough to walk round the golf course for the first time in a year with a single club. Was pretty tired afterwards but I have not had any major adverse reaction (apart from falling asleep when I got home and did I sleep well that night!) Haven't seen a GP in ages but speak on the phone occasionally. No mention of GCA. I also have "twinges" in other body parts, but how does one distinguish between PMR symptoms and "old age"?!!

[MikeVanBC in reply to LBM1953]

Great news for your golfing career LBM. And your last question is a good one!

[pegpowell]

I had a slight tear in my right rotator and had a steroid shot a month or two before PMR diagnosis. The shot greatly improved. Must always be careful even now several years later, not to over extend, such as reach up too high.

[MikeVanBC in reply to pegpowell]

I’m hoping the ultrasound and X-ray may reveal something that will justify a shot of cortisone. I’ve responded well to that in other areas in the distant past, for tennis elbow in particular. And you’re right about height Peg. I’ve now moved my coffee cup to the lowest shelf 👌

[Whippetygirl]

I am one of the lucky ones who have PMR as it mainly only affects my shoulders. I have developed a bony lump at the very top of my humorous which is about 4 times the size that it should be. It is incredibly painful and some days I can not move my right arm across the sink to turn the taps on, I too am right handed and think this is the problem, by constantly moving it I am aggravating the problem. But when you live by yourself things have to be done, unfortunately I still struggle with moderation, I and pacing. When I try resting it and using my left arm that one starts up, but as I said things could be a lot worse, this is self inflicted.

[MikeVanBC in reply to Whippetygirl]

Understood Whippety. It seems very difficult to isolate the shoulder from activity, so as a result it never seems to have time to heal, or at least settle down a bit. I had a lot of pain again last night and am taking Tylenol, but it barely takes the edge off. I guess these are new things we must accept and learn to live with, but I do hope there’s some respite for us both (and everyone!)