Polymyalgia

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

Doe

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.

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.

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!!!!!

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.

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.

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.

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.

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.

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.

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.

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

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

Just a quick update.

I had my very delayed blood test Monday, the doctor phoned me Tuesday confirmed PMR issued prescription and I started steroids Wednesday. It is now Friday morning and I have had my first decent night's sleep in days. I am still aching and think it might take me a few days to feel the benefit.

I just want to thank you all most sincerely for your support. you have helped me through a really difficult time.

I have bought and started reading Kate Gilbert's book. I have taken the advice on diet, especially on reducing sugar and carbs to avoid type 2 diabetes, which my dad had, this was on another thread I started. I have seen my optician to keep a check on my eye pressures.

I would have known nothing about all the above preventative measures if it hadn't been for all you wonderful Gransnetters. I am so grateful.

Under active thyroid here too, as well as the GCA. I was hoping to reduce the steroids last visit ( from 7.5 to 5 ), but apparently the platelet count was up, so doc left it at 7.5, then called me to say markers were also up, so go back to 10 mg a day. Now the aches and pains have returned, so I'm hoping it's the GCA going out with a bang!
I take Alendronic Acid once a week to protect against osteoporosis.

My doctor was apologetic about the 13 day wait and then the usual week wait for the results. There is a notice up in our surgery that they are doing all they can to alleviate the problems but it finishes 'we are in crisis'.

I have had one tiny victory I think the receptionist realised I was in quite a bad way when I tried to get a doctor's appointment only to be told that all the doctors were booked for the next 2 weeks. She almost whispered that each day just after midnight they released a few appointments which I could access online ( heaven help anyone who doesn't access the internet). I duly went online at 6.00 am and got an appointment.

I don't live in an inner city where the waits could be even worse, I am in a leafy part of the Chilterns where I can't imagine they have trouble recruiting staff, that is if there are enough doctors to recruit.

I don't know what I would have done without all your help and advice, very grateful to you all.

If you've been on prednisolone for so long, Coolgran, you should have had a Dexa scan, as pred sometimes causes or accelerates osteoporosis. NanKate, why is it taking so long for you to get a blood test? The morning after my GP had made the provisional diagnosis, he took a blood sample and sent it off right away. That same afternoon, he rang me with the result. Good old NHS - and a super GP.

6 years ago I had Giant Cell Arteritis and was prescribed steroid treatment 50mg daily for 6 months, it was then reduced gradually and took 2 years to come off it. I put on loads of weight, ate like a horse. My understanding is that it sort of switches off the 'I'm full' signal. I also got the puffy face/ankles and the fluid hump on the back. Friends who hadn't seen me for a few months were very shocked. Once off the steroids all came good although I never quite lost all of the weight.
Steroids are wonderful for relief, all my other aches and pains also melted away. In their place I got over eating, tremors, fog brain etc.

My Rheumatologist says I have classic fibromyalgia, he also referred to Polymyalgia presumeably because of the Giant Cell Arteritis. He also referred to 'my osteoporosis'.
The truth is I haven't a clue what I've got..... well apart from the GCA 6 years ago.
Aches and pains, yes, but no idea what the label is.

Poor you Shysal hope you get some positive results if you have a blood test. Yes a 13 day wait for a blood test is scandalous , but in the meantime I have booked an acupuncture session to keep me going. I respond well to needles.

Hope you neck and legs are sorted soon. Growing old is a minefield of aches, pains and illnesses. And you and I are mere spring chickens at 69.

NanKate, what a long wait you are having for the blood test! I hope you get some treatment soon.

I mentioned my bad neck and painful heavy legs to my GP this morning. She doesn't think it is PMR (wrong sort of pain ), but has put a blood test request on my record so that if it continues I can just go ahead and get one done. Fingers crossed it will clear up.

Thanks * Annodomini* I will definitely get the book as two Gransnetters have recommended it.

I can't wait to have the blood test a week on Monday and then a week later, hopefully, be started on the tablets.

I am a complete misery with it from about 3.00 am to noon, with aches and pains and the restricted ability to walk slowly. My left leg feels as if it is waited down. As the day progresses I improve.

The only tiny upside is that I am losing weight because I have no appetite. I am really hoping I don't put on too much weight with the steroids but I feel so desperate I would take anything that subdues the pain.

Sorry to be a misery I'm not much fun to be with.

I have oral thrush too - what a bl**dy mess.

I've had PMR for almost five years but now I think it is on the way out and I have gradually reduced my steroid dose to 4mg - started on 20. My inflammatory markers were sky high and there was no doubt about the diagnosis but if there had been any doubt, the almost instantaneous response to steroids would have been enough.
I have had a lot of help and support from a web forum - healthunlocked.com/pmrgcauk - and from a book written by a former sufferer from the condition:
Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide
by Kate Gilbert.

Hope this helps.

I have been getting painful legs and neck and wondered about PMR, and, like you NanKate, my main fear is having to go onto steroids with the weight gain. I am visiting the GP today for results of US scan of shoulder injury, so thought I might mention my fears, although part of me wants to bury my head in the sand!
I hope you get sorted soon.

Thanks GA I too have an under active thyroid - a double whammy.

I agree with the small plate and and being vigilant from Day 1. I do walk and go to Keep Fit but until I get on the tablets and start to feel better I am just washed out, but I will start up my activity the moment I can.