So....here I am again.....I'm Paul, 49, and I've been on Pred for PMR since Dec '23....so here is my update with a few questions in case anyone finds it useful....
In my last update I stated that I'd been really well after two weeks on 12.5mg....I mean really well with virtually all symptoms gone.....tapered down to 10mg as advised on 16th Jan and still felt great for the first 11 days.....but then I got the return of some symptoms.....both shoulders and a bit in the hands plus right hip......I posted about this and was advised to may be go back up.....
I didn't...I persevered at 10mg hoping it would go away. It hasn't.
To be honest, it's nowhere near as bad as when I started this but I am struggling especially in my right shoulder. It is pretty constant and especially on moving the arm, extending, rotating and picking things up or pushing/pulling. My right shoulder isn't too bad and my hips and hands remain pretty good too.
That said the right shoulder pain is now making it difficult to sleep and so I have come to the decision to up my dose today to 13mg rather than reduce to 9mg as per my plan.
I plan to stay on 13mg for 2 weeks before dropping to 12mg and staying there until my next Rheumatology appointment on 20th March.
So....that's the update....now the raft of questions 🤪
1. Does this seem a sensible course I have decided to take?
2. My shoulder pain does not present as awful stiffness and pain on waking as it initially did, more it is on movement as described above and a gnawing pain all day....could this still be something different? Worth getting scanned etc? Why would only one shoulder be the main culprit now?
3. What should I be asking my Rheumatologist in March?
4. Have decided not to take the Andronic Acid and will ask for a Dexa scan next time I go, is this wise?
I feel a bit down about going back up after making such good progress but I suppose I just have to wear that......
Hope everyone on the group is doing OK.
If you have any questions or comments, please feel free to fire away!
Thanks for all your support as always
Paul
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Paulx222
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I think you need to look at things a little bit differently ...
"I feel a bit down about going back up after making such good progress "
I don't think you can look at this stage as being "progress". it is adjustment. You are NEVER reducing the pred dose relentlessly to zero. You are titrating the dose to find the right dose for YOU AT THIS MOMENT IN TIME. It is NOT the dose you will be on forever.
When we told you to go back, there was a good reason for it, maybe we didn't make that clear. 12,5mg was still above the dose you need at present. By dropping to 10mg you were testing the water - and it turned out it was just a bit too low. Had the symptoms appeared immediately we would have said stick it out a bit, it could have been the change in dose the body didn't like. But it didn't, it took a couple of weeks - so that suggested that the dose was marginally too low and you needed rather longer to get to a stage where it would be enough - or a tiny bit more pred for now. That meant at that dose the inflammation wasn't all mopped up and could build up day by day. And it has. Now it will take more to sort it out - if you'd gone back to 12,5mg at the time and got it under control, you could have tapered in smaller steps and found the right dose. It might be 11 or it might be 10,5. It just wasn't 10mg at the time.
I think that the flare protocol we go on about will probably work and that is sort of what you are doing, just not adding 5mg for a week. If it does improve with 13mg that is fine. But you have the right idea - you are just going to take longer I suspect, If it were me, I would try 15mg for a week and drop to 12mg if everything is OK. That will be quicker and almost certainly more effective than what you are suggesting. After that you should drop 1/2mg at a time.
You have seen what can happen if you try to stick it out or try reduce the dose when you have pain. It isn't a good idea to try to play poker with PMR. It wins every time!
PS forgot to say you should try and get a dexascan if you can so you have a baseline. Even men develop low bone density and pred is a risk factor. Knowing where you are now is very useful later on. As a woman, I did get a dexascan, it was fine at the time and I declined AA, It is a fight I have had a couple of times since but I have also had regular scans - and no AA until now, 15 years on. The bisphosphonate now is because of a possible spinal compression fracture, not particularly low bone density.
Agree with PMRpro - now there's a novel concept... but had you acted sooner at the 10mg mark you probably would have got things under control.
Nobody wants to take more Pred than necessary.. but it's learning to recognise when it's not enough- and that's an art which comes with experience. ..and maybe the other thing is to listen to those who have trodden the path before you...😏
No reducing when in pain...and each dose for a month before you consider tapering.
Your shoulder pain may be something else, but give the right amount, and long enough, of Pred chance to prove or disprove that..and if it remain after the increase then maybe look for other reasons.
It’s early days like you diagnosed same time. I do not have enough experience to be much help. I have read many articles and some suggest taking 13mg one day and 12 the next for a few weeks before dropping to the lower level.
I am on 20mg and pain 80% reduced so not sure if I should increase. Don’t want to because of diabetes and weight.
Many of us ‘oldies’ on here think the alternate days regime isn’t very good for body, much better to reduce by 0.5mg and/or use one of the slower tapering plans we always advocate.
Most doctors would say 80% is a good response…. But certainly no reducing with that.. how long have you been on Pred - and have you adjusted life to accommodate PMR -
As a 49 year old man, it sounds very wise not to take AA unless there is something in your history that inclines you to osteo. Did the doc prescribe it automatically cause of pred? There are plenty on the forum who are actually in the osteo catchment who don't take it, but who make sure they get enough calcium, K2 , D and take the weight bearing exercise they can.
Doubt they'll send you for a DEXA - they ration them even for people at greater risk.
You're at the beginning of PMR and haven't got it stabilised yet, but you will. It's better not to be highly focused on tapering (got that T shirt) but on feeling as well as you can at any time. It will give up when it's ready, not by being outfoxed by a tapering regime. The main thing to do is to keep overall healthy and have a positive attitude. Also keep a diary of symptoms so you can understand them over time - you probably do that already, being well organised. X
Thanks for the reply. Yes, the Rheumatologist seemed to prescribe as a matter of course. It was only after hearing how to take them that I double checked on here as they sounded pretty mad.....and having checked I'm going to wait until I see him in March to work out whether I should start.
I agree with keeping healthy....ny indepth diary has been wiped by my phone but I've re-started this week and I do find it helpful.
I waited for a DEXA scan before starting Alendronic acid. It always good to have as much information as you can before starting another medication you might not need.
Yes do go for the Dexa scan. I paid for mine privately as GP said no (said not indicated for me at 75. The assumption being its already not great.) But I'm someone who needs to know the facts. Turns out I do already have osteoporosis so am.glad I did it.
Hi Paul, is there any chance your shoulder problem is something else. Your symptoms matched mine when I damaged my rotator cuff muscles in my shoulder and arm. Might be an idea to see a physio to check that out or even a sports massage therapist who is used to seeing this type of injury in sportsmen.
At diagnosis I had a DEXA scan. My symptoms were classic PMR so no other diagnostics were done. 2016 was my second episode of PMR. I was previously diagnosed in 2008 but refused steroids as thought I was too young. I took a cocktail of painkillers which never really got the pain under control but after 2 years it seemed to get better. Big mistake as it took hold with a vengeance in 2016!
Definitely get a DEXA scan. I got one after I had virtually finished with pred and the said at the hospital that if I had got one at the start it would of been alot more useful. They also told me they are trying to increase the availability of these scans to help with early diagnosis.
If I were you I’d investigate the right shoulder pain further. Your symptoms sound very much like mine and a private MRI revealed that I had a torn rotator cuff, torn bicep and bone spurs pressing into my shoulder. I had shoulder surgery but unfortunately after 18 months it has torn again probably due to my diabetes and taking pred. I hope you get sorted soon.
Not sure you can blame diabetes and Pred as such -although I don't think having 3 steroid injections within a year for a "supposedly" frozen shoulder prior to correct diagnosis of GCA, and a couple more during for OA helped mine - and certainly not my dominant arm -
There are two main causes of rotator cuff tears: injury and wear (degeneration).
Acute Tear
If you fall down on your outstretched arm or lift something too heavy with a jerking motion, you can tear your rotator cuff. This type of tear can occur with other injuries, such as a broken collarbone, a dislocated shoulder, or a wrist fracture.
Degenerative (Wear-Related) Tear
Most tears are the result of a wearing down of the tendon that occurs slowly over time. This degeneration naturally occurs as we age and in most cases is relatively painless.
Rotator cuff tears are more common in the dominant arm — the arm you prefer to use for most tasks. If you have a degenerative tear in one shoulder, there is a greater likelihood of a rotator cuff tear in the opposite shoulder — even if you have no pain in that shoulder
Several factors contribute to degenerative, or chronic, rotator cuff tears.
Repetitive stress. Repeating the same shoulder motions again and again can stress your rotator cuff muscles and tendons. Baseball, tennis, rowing, and weightlifting are examples of activities that can put you at risk for overuse tears. Many jobs and routine chores can cause overuse tears, as well.
Lack of blood supply. As we get older, the blood supply in our rotator cuff tendons lessens. Without a good blood supply, the body's natural ability to repair tendon damage is impaired. This can ultimately lead to a tendon tear.
Risk Factors
Because most rotator cuff tears are largely caused by the normal wear and tear that goes along with aging, people over 40 are at greater risk.
People who do repetitive lifting or overhead activities are also at risk for rotator cuff tears. Athletes are especially vulnerable to overuse tears, particularly tennis players and baseball pitchers. Painters, carpenters, and others who do overhead work also have a greater chance for tears.
Although overuse tears caused by sports activity or overhead work also occur in younger people, most tears in young adults are caused by a traumatic injury, like a fall.
My problems started when I tripped and steadied myself against a wall with my arm outstretched. I thought it was nothing but the pain got worse and I ended up at the hospital having an X-ray. They didn’t do an ultrasound but said it was possibly tissue damage and to rest it. That was in November 2021. A massage on a holiday in March 22 made it worse as despite telling the masseuse about my shoulder issues she leant hard on my shoulder and caused even more damage. I paid privately for an MRI which revealed three torn tendons. I was in extreme pain and couldn’t move my arm away from my body. In sept 22 I had rotator cuff surgery to repair three damaged tendons. The surgery worked but now nearly 18 months further down the line my surgery has failed and I’m in pain again. I’m due to have a steroid injection in the shoulder soon using ultrasound to hopefully help decrease the inflammation and give me less pain and more movement.. I hope things improve for you🌸
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Update on my GCA journey
UPDATE ON PMR JOURNEY
