Pain greater on one side

[barbthy]

Usually the pain is in both shoulders and hips, today everything is on the right side. Is this part of PMR - I am newly diagnosed, last month. Confused and trying to learn about it.

[piglette]

PMR is normally bilateral, I don't know why yours is suddenly on one side only. Are you taking vit D and calcium? Your doctor should prescribe them for you. Also you should have a Dexascan as steroids can cause bone density problems, ask your doctor to arrange a scan. There can be quite a waiting list. You should have a regular blood test for CRP/ESR also occasional ones for glucose, full blood test, u&e, for example, also ask for a vit D test.

[barbthy in reply to piglette]

Initial CRP was 56 See GP in 2 days and asking for vit D test Scheduled for bone density end of month

[piglette in reply to barbthy]

Hi barbthy, looks like you are organised. Have you had another blood test to check if the inflammation is under control, as your CRP reading was quite high? You are planning quite a drastic reduction if you still have inflammation. The fact you are having pain may be a giveaway.

[PMRpro Ambassador]

You say you are newly diagnosed - a potted history would be handy: your symptoms, how long you have been on what dose of pred, activities you were doing before the one-sided pain appeared. And above all - when you felt a lot better with the pred, what did you go out and do?

[barbthy in reply to PMRpro]

Started on 20 mg pred 3 weeks ago, down to 15mg last week and started 10mg this morning. Feeling better has been like a yo yo, some good days and some bad. I was doing exercises from physical therapy and noticed later in day right hip hurt and trouble walking. Struggling as to best time to take pred and still sleep at night.

[PMRpro Ambassador in reply to barbthy]

The entire pred dose should be taken as early in the morning as possible - gives you the longest recovery before bed. But some people can take it immediately before bed, are able to get to sleep before it is absorbed and they get up with no pain next morning.

At a guess your bad days will follow a good day when you felt so good you did too much. Also physical therapy is a mixed blessing in PMR - your muscles remain intolerant of acute exercise and repetitive actions as you will do in PT are particularly bad for causing pain. Great care is required - and hydrotherapy is by far the best approach to avoid DOMS (delayed onset muscle soreness) - your muscles are unable to signal they are being overused and the DOMS takes much longer than usual to heal.

[Rugger in reply to barbthy]

This reduction sounds much too fast. In 4 weeks, you have halved your dose of pred. Most of the 'Guidelines' and there are several, would say to stay at each dose for longer. My GP kept me on my starting dose of 15mg for 2 months (he initially wanted 3!), then 13 and 12mg for a month each, 11mg for 2 weeks and then I stayed on 10mg for 2 months because of my symptoms. I'm sharing this with you for comparison, not to say that this is how you should do it. As we say here "We're all different". What you are aiming for is the lowest dose that keeps your pains away.

Best wishes.

[barbthy in reply to Rugger]

It sounds like your GP and you have a good relationship. Will see mine tomorrow and bringing him article from this group. Sounds like the dosing of prednisone is fluid and should be responsive to symptoms. Are we supposed to be pain free - still waiting for that.

Love the advice and feedback from this group

[PMRpro Ambassador in reply to barbthy]

Whatever you achieve at your starting dose is your guide - providing of course the starting dose was enough in the first place. Some people are lucky and are pain-free, others are not. Sometimes not all the pain is due to PMR and it is thought some people have PMR as well as something else. But in terms of PMR - your starting dose result is your guideline.

[Rugger in reply to barbthy]

'They' say aim to get rid of at least 70% of the pain. I've never been pain free, but have had manageable 'aches' rather than pains, but muscle weakness and fatigue too. Some people here seem to be 100% free of pain - the lucky ones!

However, it is also a case of managing the timing of the pred as well as the amount you take. The cytokines which cause the inflammation are shed around 4am, so the nearer you take the pred to that time, the better. Some folk set an alarm for 2am and have something to eat and their pred, so that it will be in their system at the right time. Some people take the gastro-coated pred at bedtime and hope that it will be released in the early hours. People in the USA and in Europe, including PMRpro in Italy, take a coated modified-release form at night that is released as one dose at the right time, but it's not available on the NHS and is £1+ a tablet to buy privately in the UK. Pred on the UK NHS is around 3 - 6p per tablet depending on dose and coating!

Then, of course, there's the issue of pacing yourself and not over-doing exercise or other activities such as housework!! Your muscles will not thank you for any over-exertion. Be gentle with yourself in these early days. We don't know if you're working, or even where you are - I'm wondering if you might be in the USA?

Yes, this forum is great. I have learnt so much over the last 14 months, but as important, have felt supported by the other 'Forumites'.

I hope your GP is as good as mine. He admits he may see only one patient a year with PMR, so he's learning from me. I'm lucky!

[barbthy in reply to Rugger]

Thank you for your in depth reply, it helps me understand PMR a little more. I am an 81 year old retired nurse living in North Carolina. I will see my GP tomorrow and will acquaint him with this site and hopefully he will follow the dosing and tapering guidelines

[Gaijin in reply to Rugger]

Rugger, You sure are privileged to have a GP who wants to learn and is humble enough to admit he averages one PMR patient per year. There must not be too many of such docs around anymore.

I, too , am learning a lot about PMR on the forums They should get an award for best health forum! I have been looking for one, for another, more common condition but find them all to be inadequate as I'm using the PMR/GCA forums as the standard. There are none that are so personalized, intimate a community where you can find immediate answers and support. I guess it's easier to create a forum like this when it's re a relatively rare disease rather than a common one.

[HeronNS in reply to barbthy]

Barbthy, we are all different. My experience was a trial of one week at 15 mg. As that was successful, eliminating all pain, including non-PMR aches and pains, I was told to stay at 15 for a further four weeks then taper by 1 mg per week until I felt pain return. This, for me, happened at 9 mg. At that point I discovered the forums and learned about the Dead Slow Nearly Stop plan. Went back to 10 for a couple or three weeks, then started tapering much more slowly, with my doctor's approval, fortunately. After about 25 months I'm now at 1.5 mg. I did have return of the (not serious) osteoarthritis pain, but other issues appear to have been PMR related and pred and a brilliant physiotherapist have really helped there. I do have "niggles", not as pain free as at the beginning, but I think for me to achieve that I would have to stay at a much higher dose, and as long as none of the disability associated with PMR comes back I'm happy enough. I had some fairly serious, although invisible, side effects from pred, so getting to a low dose was important to me. I believe I have a better response than the 70% minimum pain reduction we should expect. Recently tried to approach zero pred but pretty sure I'm not ready for that yet, so prepared to sit it out at this low dose for as long as it takes.

[barbthy in reply to Rugger]

It was so bad yesterday, even though I was supposed to drop from 15 to 10 I took 5 more later in the day and had a good night. Today still stiff and sore shoulders but nothing like yesterday. Took 10mg at 7 this morning and will take another 5mg tonight.

[HeronNS in reply to barbthy]

Never drop by more than 10% at a time. At low doses even that is too much, hence the slow tapering plans.

[lyndamcw in reply to barbthy]

You may have a tendonitis caused by steroid which can be one sided