Polymialgia Rheumatica

SylviaW

Hello, my name is Sylvia (71) and was diagnosed with Polymialgia Rheumatica the week before Christmas. My condition is managed by taking steroids plus other pills to counteract the side effects i.e. bone loss and stomach problems. The tablet I am most worried about is the Alendronic Acid which I take once a week as that can cause side effects too! I've only taken one so far! Any comments gratefully received! Happy New Year!
Sylvia W

[Deleted User]

Hi Sylvia,
Welcome to the forum.
I can understand your concerns when starting on medication. I don't have personal experience of Alendronic Acid, but there are lots of people on here with a vast range of experiences of arthritis, so hopefully someone will be along soon who does.
Here is a link to the information about Alendronic Acid on the NHS website:

https://www.nhs.uk/medicines/alendronic-acid/

Also, in case you haven't already seen it, or read similar info, I'm posting a link to a section about polymyalgia rheumatic on the Versus Arthritis website. Hope it may be helpful:

https://www.versusarthritis.org/about-arthritis/conditions/polymyalgia-rheumatica-pmr/

Do keep in touch and let us know how you get on with your medications and with managing your condition now that you have a diagnosis and treatment.
With very best wishes,

Ann

stickywicket

Hello Sylvia and welcome from me too

For some reason people with PMR don't seem to hang around on here too long. I interpret that as a good sign that, after the initial shock, they are able to get on with their lives fairly normally – with the addition of the meds.

I understand your concerns about alendronic acid. The instructions are quite scary, aren't they? (Staying upright etc.) But we've had several people on here who take it and I don't remember anyone having problems with it other than mild nausea. The reason for it is to counteract the bone loss which steroids can produce and, as such, it's a very good thing. You have enough on your plate dealing with PMR without having osteoporosis thrown into the mix.

I hope you're finding the meds regime helpful. Some people seem able to carry on much as they did before diagnosis but rest is important too so don't feel you're giving in to it if you can't. It's a nasty thing while it lasts.

dreamdaisy

Hello, I am sure your diagnosis has come as a shock, especially if you have been familiar with good health and a body that works as it should: how very dare it turn against you, yes? I took alendronic acid for at least a couple of years and found it a blasted nuisance in comparison to my other meds. Once I weaned myself off the steroids (I don't have PMR, I was selected for psoriatic and osteoarthritis) I was able to stop the AA, hurrah. I began arthritis when I was 37 and am now 59.

It often made me feel queasy for a few hours post-ingestion which I countered with proper coca-cola and distraction so I wasn't sitting there focusing on how yucky I felt. Having been dependent on medication to enable life since the age of twelve I don't think too much of what I am taking, when starting a new med I read side-effects leaflet once then put them away. They contain warnings rather than guarantees, the aim of the drugs is to improve the quality of life and, more often than not, they do. I wish you well, please keep in touch and let us know how you are getting on. DD

SylviaW

dreamdaisy wrote:

Hello, I am sure your diagnosis has come as a shock, especially if you have been familiar with good health and a body that works as it should: how very dare it turn against you, yes? I took alendronic acid for at least a couple of years and found it a blasted nuisance in comparison to my other meds. Once I weaned myself off the steroids (I don't have PMR, I was selected for psoriatic and osteoarthritis) I was able to stop the AA, hurrah. I began arthritis when I was 37 and am now 59.

It often made me feel queasy for a few hours post-ingestion which I countered with proper coca-cola and distraction so I wasn't sitting there focusing on how yucky I felt. Having been dependent on medication to enable life since the age of twelve I don't think too much of what I am taking, when starting a new med I read side-effects leaflet once then put them away. They contain warnings rather than guarantees, the aim of the drugs is to improve the quality of life and, more often than not, they do. I wish you well, please keep in touch and let us know how you are getting on. DD

Thank you for all your replies. Yes it did come as a shock having been fit and healthy before. WE had just returned from a few days in Edinburgh, travelling by car and train and doing a lot of walking whiles up there and put my stiffness and aching limbs down to all the travelling and having overdone it. I put up with it for a month before seeing my GP. The list of side effects is very scary so I tend to ignore them until I suspect I might be experiencing one! Will keep in touch. Sylvia W

dreamdaisy

The list of possible side-effects does make for unsettling reading but, as I remind myself, they are there to protect the manufacturer from law suits: if you are warned that one in ten thousand turns purple, and you are that one in ten thousand, then you're proving the statistic is all.

This must be tough and I do empathise. An old proverb states 'Good health is the crown on a well man's head but only a sick man can see it.' How very true. Another quote I like is 'The body itself is a disease.' I've proved that one since birth. DD

SylviaW

stickywicket wrote:

Hello Sylvia and welcome from me too

For some reason people with PMR don't seem to hang around on here too long. I interpret that as a good sign that, after the initial shock, they are able to get on with their lives fairly normally – with the addition of the meds.

I understand your concerns about alendronic acid. The instructions are quite scary, aren't they? (Staying upright etc.) But we've had several people on here who take it and I don't remember anyone having problems with it other than mild nausea. The reason for it is to counteract the bone loss which steroids can produce and, as such, it's a very good thing. You have enough on your plate dealing with PMR without having osteoporosis thrown into the mix.

I hope you're finding the meds regime helpful. Some people seem able to carry on much as they did before diagnosis but rest is important too so don't feel you're giving in to it if you can't. It's a nasty thing while it lasts.

Well one of my sisters has had PMR for ten years plus she has the added complication of Fibromialgia, poor thing. My younger sister has osteoporosis and was prescribed Alendronic Acid which she couldn't tolerate so was put on something else which she is fine on. So perhaps I was over anxious about taking it myself. I should take the 2nd tablet tomorrow. Time will tell!

daffy2

A colleague of mine had PMR which took about 4 years to settle - she wasn't amused as the doctor had assured her that it would be no more than 2....
Regarding the OP drug, any side effects such as nausea may well settle as you carry on taking it, otherwise it may be worth asking about the liquid alternatives to the AA tablets which are now available to see if they are better for you. It isn't the only OP drug though and if you find things don't settle and you can't tolerate it then you can go onto another, as your sister did.

SylviaW

Thank-you Daffy2.
When you're 71 four years seems a long time but we shall see how I get on. I wasn't told my PMR would definitely clear up, just that I might have a relapse once I was weaned off the steroids.
I really also need to look into building up my wasted muscles as I have lost weight as well but I don't want to overdo it and the strength in my right arm and hand is weak in the mornings until the steroids kick-in. I have simple exercises to do via the Arthritis Care leaflet but need to find out more going forward.

SylviaW

Hello everyone! It's been well over a year since my last post. I had been worried about taking the Alendronic Acid tablets but luckily I've been ok on them.
I am now down to 2 mg of steroids a day though have tried and failed to get down to 1mg. Doctor has assured me it's still early days and it usually takes 18 months to 2 years for the Polymialgia to burn itself out. I do feel I need to build up arm muscles but don't want to overdo and find I'm back to square one! Will be seeing my doctor soon for some advice. t4591 Sylvia W

dreamdaisy

Hello again.

I took a year to come off oral steroids, reducing by 0.5 or 1 mg every three to five weeks. Towards the end I found I was just forgetting to take them, having been reunited with my usual level of moderately grotty. A DEXA scan a few months later confirmed I had done the right thing them as my bone density had increased by 4%. (I had already dropped the AA, what a faff that pill was.) I miss that fake feeling of being better but I know there's more to life than good health.

Good luck, see you in 2021. DD