Polymyalgia

So pleased you're on your way to dealing with this horrid condition NanKate. I am now down to 1mg prednisolone daily and will have my (I hope!) final blood test in a couple of weeks. If the results are positive I will, at last, come off the steroids . It has taken me 5 years, but many people get through much quicker.

So there is light at the end of the tunnel! Good luck

Hello Indinana. I'm so glad to hear you may be at the end of your journey. Although I am only just beginning, I know I will reach the finish line someday.

I am grateful this is not terminal and that in a few days time my old legs will return to me. I now know what it is like wearing a suit of armour

Good news, NanKate. Sorry that you had to wait so long but pleased that you are now on track. I'm just coming up to the 5th anniversary of diagnosis and long to be off the steroid, but if I tried to hurry things I could have a 'back to square one' flare, so have to be patient. I hope the doc has prescribed AdCal or equivalent to prevent osteoporosis.

Yes Anno the doctor has prescribed AdCal and something else called Hydro something which I take once a week and have to sit upright for 30 mins

I have had my bone density taken twice some years back and it is the only health check I have come out of with Flying colours. So that is a real benefit for me.

Can I ask you have you had much weight gain the last 5 years? To be honest it is worrying me as it took me 18 months to lose 3 stone and I really don't want to go back to being porky.

I am so pleased that the GP acted quickly to get you started on the tablets. Let us know when you are pirouetting! A friend who had PMR took steroids for only about a year and gained no noticeable weight, just got the fuller face, which suited her. However, I suspect it is those who have the tendency to gain in everyday life who will struggle more.

Thanks Shysal for your positive response. Because I have lost weight with this illness I am starting in a reasonable position. I am going to eat sensibly and as a I have a thinnish face it will not be too bad I hope.

I think the dancing is a bit of a way off and I won't be appearing on Strictly this year, but you never know.

I am always better in the evening and have managed a short walk each day. We live on the edge of the countryside so just to hear the birds and watch the overhead Kites is a good way to feel better.

Have a good weekend.

The tablet you take once a week is alendronic acid. I've never taken that - it was prescribed from the outset, but I refused. It's usually given to people who have osteoporosis and has one or two extremely rare but scary side effects. I agreed that if a DEXA test should reveal at any time that I had developed osteoporosis then I would reconsider, but I wasn't prepared to risk these side effects for what was effectively a prophylactic drug. Thankfully my bone density has remained good so I've kept off it.

I think I will wait and chat with doc about that alendronic acid Indi as I am not sure I really need it as I have pretty decent bones. I will continue with the Vit tablet I have been given. Thanks for the info about side effects of the AA I think I am going to have more than enough side effects with the steroids.

It's me again

For those of you who have had Polymyalgia can you tell me how long it took you to become pain and stiffness free after starting the steroids ?

One or two of you have said the tablets were miraculous, well I have improved but not at that speed. I am reasonable from about 10.00 am to 9.00 pm but it still all comes back back during the night.

I will be seeing the doc in a couple of weeks, but I thought I would be so much better by now.

Hi, was diagnosed eventually with PMR in February. Have tried lowering dose to 15 but unsuccessful. Have stated gentle exercise and low key swimming which is such a life saver as I have gone from an active multitasker too a only one or two tasks a day before falling asleep or just unable to move. This must be the most frustrating disease. Side effects have included costant dehydration ,dry tounge, weight gain constant visits to the loo and forgetfulness. Sorry to rant on, my GP says I am not dying, there are worse people off and I agree but you wake up every day in hope that you might feel normal and able to do what you used to but ...... Listen to you body meditate and patience!!!!!

Hello Charlie I agree this is a frustrating illness especially if you enjoy a busy lifestyle.

I have been on the steroids since May and and it took me a long time to feel more mobile. So don't despair. I suspect I had had the illness for some months beforehand.

I too had the lethargy where I kept falling asleep but I noticed about 2 weeks ago I was beginning to wake up and now only need one sleep after lunch.

I have changed my diet and reduced sugar and carbs and increased fat a little and I think this has definitely helped. There is a very useful thread on this topic.

At least we know this isn't an illness for life but it is bl**dy annoying.

Just a question, I am experienceing heavy pain in my legs. I am taking the dog for a walk around the block but by the time I get home my legs are like dead weight.

Doe

Does anyone still use this thread? I am new to PMR and could use some useful info!