Steroids seem to be working on my PMR

[Herrylaw]

I first wrote on this site about a month ago, as I was not sure what my symptoms of pains in my arms - mainly at night and worst in the morning - were. My doctor and I had been thinking for some months that it might be Polymyalgia Rhumatica and I was having regular blood tests while the symptoms grew stronger. In the mornings, in particular, I had trouble moving about in bed and adjusting the bedclothes. When I got up (with difficulty) I couldn't hold my toothbrush and found it difficult to shampoo my hair as I couldn't raise my arms. On the lavatory, I had trouble using the paper as my arms were so weak and painful and my hands weren't being much help. As the problems persisted, I recalled that I had been feeling stiff and achy after driving or getting up out of a chair for some considerable time despite taking plenty of exercise (walking about 7000 steps and 4 miles a day according to my phone) and that maybe this was related to the pains in my arms. I took ibuprofen at least three times a day and sometimes in the middle of the night to counter the pains.

Eventually, we decided to start steroids and after a blood test to determine the base-line infection level and overcoming my concerns about the numerous scary side-effects listed on the packet I took the first dose of prednisone (15mg) last Saturday and the effect was noticeable in a day. I took no ibuprofen that day or that night and the pains were noticeably less and much more bearable and I haven't taken any since. Now I can feel the same pains at a much reduced strength and although I still have some of the practical difficulties mentioned, they are much more manageable and I can function better. And I don't feel nearly as stiff all over as I had done.

I have three weeks worth of pills and will see my doctor again at that time. But a great relief so far!

[PMRpro Ambassador]

I hope you are seeing him BEFORE you run out of pills because you need to keep going. If you stop the symptoms will back in the same time they faded - I was in bed in tears and agony just 6 hours after missing my first tablet, even at 5mg by then. And often it is harder to get things under control if you let in a flare.

[Herrylaw in reply to PMRpro]

Thanks for your advice! I will see the doctor in time for more pills....

[Celtic PMRGCAuk volunteer]

Hello Herrylaw

It's great to hear how much better you feel since starting Pred - such a good resolution of your pain so soon after starting Pred will, no doubt, be taken as proof of his diagnosis by your GP.

Hopefully, as long as you remain on the correct dose for your inflammation levels at any one time, then you should not need any more Ibuprofen - in fact, along with other NSAIDs, they are not recommended alongside steroids.

Just a little word of caution: the steroids aren't curing anything, they are just damping down the inflammation whilst the disease takes its course, so we all have to do our bit to help this along by taking things easy and not over-exerting ourselves, especially in these early days of treatment, to give the steroids the very best chance of doing their job.

Hopefully, your GP has started you on calcium plus Vit D medication (Calcichew) to help protect your bones - in fact, if you haven't had a DEXA bone density scan, it would be a good idea to request one so that you have a baseline figure to work on for the future. A Vit D blood test is also recommended as any deficiency can lead to pain similar to that of PMR.

Lots of good luck wishes but meanwhile don't hesitate to get in touch if you have any questions - there will always be someone around on here to help from their vast experience.

[Herrylaw in reply to Celtic]

Thanks very much for your advice!

[SheffieldJane]

That is a classic description of PMR if ever I read one. I think your relief could be even better on 20 mgs, the dose a lot of us start on before we begin tapering down, just to completely control the harmful inflammation.

Most side effects of Pred can be managed, please share any that bother you. Remember to pace your activities, you still have the disease even when symptoms are slight. Pred is not a cure, just palliative really, although inflammation left unchecked can do a lot of harm. A bone scan would be good at this stage, just to see how your bone density is. They will try to insist that you take Alendronic Acid for your bones. In my view, a hideous unproven drug. Calcium, a good diet and gentle exercise often does the trick. Avoid the carbs and sweets and you won't become a honey monster ( like me). Good luck!!

[Charlie1boy]

Just a thought as you are new to this affliction!

I stayed at 15mg for five weeks before trying to taper down. I was started at 30mg, which is high for PMR, but was down to 15mg (the normal starting dose) within two months. One thing we all say is, don't try to taper down until you really feel ready for it - your body will tell you when this is.

Also, the recommendation is not to reduce by more than 10% of your dose at any one time. The recommendation by Celtic to take things easy is very important. If you don't do that the PMR is likely to come back and bite!!!

A good way to find out more about PMR is to get a copy of Kate Gilbert's book " Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide". It is an excellent and very informative read.

Meantime, you have my sympathy. I can readily identify the symptoms you describe - not nice at all.

Good luck and best wishes

Paddy

[DorsetLady PMRGCAuk volunteer]

Hi,

Welcome,

Have a look at this as well - healthunlocked.com/pmrgcauk...