Tilly

[5678Tilly]

New to PMR. Need all the advice I can get. My doctor has put me on 20mg steroids which has been a great help with pains and stiffness. I also suffer badly from Restless Leg Syndrome which was unbearable at night keeping me awake. Since starting steroids is has practically gone. Just received a copy of my. blood work out and I see that they did not do my ESR or CRP tests. Is this unusual? Also I can only sleep a few hours at night.

[PMRpro Ambassador]

It is unusual if PMR is suspected but 1 in 5 people don't have raised levels anyway and it is only part of the jigsaw. If your doctor was confident of his suspicions he may only have done the things to rule the nasties out that can masquerade as PMR (it is just the name given to the symptoms of an underlying illness). Your response to pred is as important as whether your ESR or CRP are raised.

Sleep is often a problem when on the higher doses of pred and 20mg is the borderline between moderate and high. It should improve as you reduce the dose - but don't be in too much of a rush.

patient.info/forums/discuss...

Follow this link to get a load of other links to info about PMR - loads of advice there too!

[5678Tilly in reply to PMRpro]

Thank you for prompt reply. I am not in any hurry to reduce my steroids. Don't want to go back to that miserable life I had over the last few months!

[DorsetLady PMRGCAuk volunteer]

Hi Tilly and welcome,

Glad to hear you are getting relief from Pred. It is unusual not to test ESR & CRP as they are one of the normal markers to help diagnose PMR.

The lack of sleep is probably a side effect of Pred as you don't say that the pain is keeping you awake. If so, as you reduce, your sleep patterns should return to normal.

Suggest you get Kate Gilbert's book - PMR GCA - a survivors guide. Amazon - hard copy or kindle available. Also if you look at PMRGCA uk web site it will give you some excellent reading. May also help you explain your illness to friends and family, sometimes they find it hard to accept you are ill, Pred usually makes you look good!

I'm sure others will come along with links to other useful sites.

Please ask any questions, no matter how bizarre they may be, somebody will have experienced them for sure! And more importantly will help you. Take care.

[5678Tilly in reply to DorsetLady]

Relooking at blood results. They did the CPR which is in the normal range but can't find ESR -will investergate further. Going through the results is a long job trying to understand them. Just got Kate Gilbert's book yesterday. It gave me so much more insight to PRM. Thank you Dorset Lady

[Patricia157]

Welcome

Like you I found sleeping very difficult in the first weeks of this condition. I found that getting up for half an hour or so during the night and reading helped me get back to sleep easier. Or putting on my electric blanket for a short time - mine switches off after an hour on low. Listening to the radio on headphones for a short time during the night also helped.

In the beginning you will find you are very tired during the day and so go with what your body is telling you and get as much rest as much as possible. Cut corners with housework etc.

The invaluable advice I got from the pros here on this forum is to only drop the Prednisolone by 10% each time and use the very slow method. This has certainly worked for me.

I am sure you will find that in a few weeks time you will be more confident in what you can and cannot do each day.

It will get easier, I hope for you, and I wish you all the best.

[5678Tilly in reply to Patricia157]

Thank you Patricia for all your sound advice. Everything helps at the moment.

[Pipistrelle]

CRP is actually considered a much better indicator than ESR, so that might be why they didn't run ESR. However, I found it very useful to have both and track both as I went through reductions (so might be useful to request ESR as well next blood test). My GP practice are great and when they do bloods they always did a full panel, and also, I could simply make my own appt and have them done whenever I wanted, so I tended to do them every couple of months -- I think I did 8 or so over the time I was on preds for PMR.

As others have noted, sometimes ESR and CRP seem totally unrelated to the level of inflammation we experience! One of the oddities of this condition. Also, might be useful to know that a certain amount of ESR elevation is expected as we age anyway, so the baseline they use for our supposed goal for 'no inflammation' generally fails to include this consideration. Some GPs don't seem to factor it in and expect people to get below a level they simply can't.

20mg would be at the higher end of what's recommended for the start of preds for PMR and as others say, would easily cause sleeplessness, a very common side effect at initial higher doses. I started at 15mg and found that made me quite hyper; the restlessness during the day went once I was below 12.5, but I never had sleeplessness -- I slept like a log for the first time in weeks, once on preds, I think as I was just so exhausted from the horrible nighttime pain!

The reverse of you, I acquired some mild restless leg syndrome while on preds -- it's funny how much reactions can vary between people. I also had no weight gain issues and for a while was losing weight on preds -- another known possible side effect, but usually it's the other way around.

On the plus side (given how much we all generally don't want to be on preds ) -- it does get rid of a lot of the day to day aches and pains and I'd forgotten what it was like to feel 20 again, without the niggling knee, shoulder and back pains of getting older! (although the PMR pain was also there)

[Skodadet]

I find magnesium good for my restless legs....so I soak my feet in Epsom salts every morning whilst I have my breakfast....works a treat!