Polymyalgia - has anyone had it and recovered?

[thecatfromjapan]

Hello, People of the Autoimmune board.

I think my title probably hints at my reasons for posting (and a slightly worried state of mind). I've just been diagnosed, have started steroids (Day 3). They seem to be having some effect but ...

Basically, I've waited 7 months to be seen by a Consultant and diagnosed (and prescribed steroids) and in that time the pain and stiffness has increased so much - it's been utterly grim. I'm exhausted all the time, can hardly walk, can barely dress myself/brush my hair, etc. It started so suddenly and just became worse and worse.

I suppose what I'm really posting for is reassurance that it will be cured. Will it ever go away completely? Will I be able to do all the things I used to do? I used to love Astanga yoga. Actually, I used to like just being able to put a pair of jeans or my coat on. It seems like a life-time ago.

Is there anything I should do that would improve things? Or anything I should watch out for?

Any information - even if it's not all happy news - would be really appreciated. Thanks.

Goodness. Just read that back and it sounds like one long, self-pitying wail. I'm blaming the overly-misery-soakedness of it on the fact that it's very cold and I feel Spring-deprived.

Sorry.

My mum had it for around a year and felt the steroids helped massively. If you can afford a private referral then do it - it's so unfair that you are living with this pain

Hi, I've had it and am now recovered. Had it for 3 years, was on steroids, but it gradually improved in the past year. However, mine was triggered by chemotherapy so atypical in onset and therefore there was a theory that it might resolve itself (a theory by my professor although he had no evidence that it could resolve itself as he hadn't seen other cases where it had). whilst I am nowhere near as physical as I used to be - but put that down to having had cancer and effects of treatment - I am jogging again and lead a fairly active day to day life (cycling, walking, play with my child) which a few years ago was nigh on impossible. I too could barely dress myself and couldn't sleep from the pain in my joints and muscles etc.

The steroids help, although caused other side effects for me, but so too does keeping as active as possible. Its not all doom and gloom, so chin up and best of luck.

Thank you for replying, lilyvoltage. It's much appreciated.

I've had the referral now and I'm in the system - on the road - hurrah!

Did it clear up completely for your mother after a year?

I suspect it's quite a tricky thing for you to answer. Apparently, it's usually something that older women develop and it's quite rare in women of my age. But did she think she went back to her previous levels of mobility, movement and painlessness? Did she develop other auto-immune illnesses?

Thanks, Chilver.

Sorry to hear you were so ill. Your Consultant sounds as though he was ... optimistic.

I feel insensitive asking you, when you have clearly faced a number of challenges, of which polymyalgia must be one of the smaller, but may I ask you what the side-effects of steroids might be?

I'm so glad to hear you're cycling and playing with your child. Hope you're having a wonderful time and enjoying it.

My mum had polymyalgia rheumatica and was on a high dose of steroids. They increased her appetite greatly! The consultant should outline any possible side effects if you are on them for a while, or a pharmacist may be helpful.

It does tend to start after the age of 60 - I think my mum was 65 - and can be hereditary. Other close family members have had arthritis and an aunt of my mums possibly had PR as well. The consultant thought my mum developed Lupus later in life.

It is painful - I hope you find some relief very soon.

No worries, thecat, happy to share if it helps. I put on a huge amount of weight, and very rapidly. However, that was also exacerbated by the surgically induced menopause from the cancer surgery so the combination of steroids and menopause caused my weight gain so will probably not be the same for you! I have now lost most of the weight but its been a hard slog - think the last stone is now just age related...

Good news is that I was also unusually young when I got it - mid 30's - so perhaps that is why I managed to recover so may be the same for you?

Oh, and one thing I am sure your consultant mentioned when prescribing steroids is that you need to watch out for bone density loss so need regular DEXA scans and I'd suggest you up your vitamin D and calcium and keep exercising as much as possible. I used to exercise and then would have to ask my DH to get me undressed as I couldn't even move my shoulders to take off my top and bra! But I think it really helped in the long run to get me better.

Thanks you Cotswalds and Chivers.

OK. So I'm probably going to put on weight but otherwise, I should start being optimistic.

Thank you so much.

And I wish all of you a happy week, with lots of love, laughter and warmth in the cold weather.

Sorry, Chilver - you're not jam!

Just found this thread. I have just been diagnosed with polymyalgia - I can't believe, thecat that it took 7 months for you to be diagnosed! It must have been unbearable! I have had it for about 3 weeks and have been utterly exhausted with the pain and lack of sleep - went to the GP and she diagnosed it immediately (confirmed by blood test). Started steroids this weekend. Am really anxious about the possible side effects, especially those relating to depression/mental health/hallucinations - has anyone experienced them? Also the weight gain, and bone density loss. I'm hoping they can reduce the steroid dosage reasonably quickly. Is this likely? I'm also pretty fed up about having it now, seeing as I'm quite a few years away from my 60's!! Dread to think what else old age might have in store.

My DM has it and has Giant Cell Arteritis for good measure.

TBH, we have mainly focussed on the GCA as it is a much more serious condition and she has been on mega doses of steroids but after a year she is loads better.

Yes, it did take ages for her to be diagnosed and I'm not sure she would have been diagnosed at all if her daughter wasn't a doctor and made the diagnosis herself. GP had called it fibromyalgia and when my DM went and asked for the blood test said it was unlikely even though she had all the symptoms and all the risk factors

Make sure you have bone protection. My poor DM broke her arm before hers got started. She's had every side effect going - worked massively hard on her weight but still diabetic, now looks like she has cataracts . However the doses for GCA are much bigger than PMR.

Results are brilliant and yes after a year, everything is so, so much better. After 5 years the condition should have burnt itself out and gone away completely.

Finally there is a PMR society which publishes a book - my mum found it really helpful.

www.pmrgca.co.uk/content/pmr

I have recently been diagnosed and am now on a reducing dose of steroids, at the same time I have changed my diet, no refined sugar, no alcohol , no dairy, and feel this has helped enormously, I have actually lost weight. I still have tiredness and muscle weakness, but pain has gone. Am hoping I can now build some strength, I have had to retire from yoga teaching though. Exercise does not improve inflammatory conditions.(interestingly, fibromyalgia is not an inflammatory condition)

Sorry I did not mean to dead the thread. Glad to hear about your mumAnna, I hope it ‘burns out’ as you say.
I hope the treatment kicks in soon OP.

Hello people.

Thank you so much to everyone who's replied - I'm really grateful for your information, advice and shared experiences.

It's so horrible, isn't it?

I've been away from MN for a Bit - in part because everything became a bit much!

I'm now on steroids and reducing the dose. I have good days and also bad days. ☹️

I'll definitely give the diet change s go.

So thank you. 😊

Hi @theliverpoolone, I've just been diagnosed with PMR and I read your post which really resonated with me, I am feeling everything you described and I wondered how you are now?
If you see this, I'd be so grateful for any advice or to hear your story.
Thanks so much

Hi booboo. Sorry to hear you've got this awful condition. I'd say I'm 'managing' at the moment. Have tapered down from 20 mg steroids to 10. Tried to go down to 9, but was in quite a bit of pain, so am sticking to 10, but trying now to do 9 on alternate days. I have days where I have no pain at all, days where I feel a bit low-level achey, especially in the morning (although I'm now splitting my steroid dose so I take 2 mg in the evening, which helps minimise the morning pain), and the occasional 'flare-up' where I'm in agony again . I don't feel I've experienced any major side effects - have felt 'low' and a bit snappy sometimes, but nothing extreme, thankfully. I'm taking prescribed calcium supplements for bone density.

I joined a Facebook support group for Polymyalgia, which is great for hearing about others' experiences. Diet is talked about a lot, and I do think perhaps I could reduce down on the steroids if I tried adjusting my diet, as pp above mentioned, but I've been a bit lazy on that score . Generally though, I'm coping ok. Would love to see the back of it, but from the Facebook support group I get the impression it could potentially be a few years before it may clear up.

Ah, another thing - one thing to look out for is swelling around the neck/collarbone area; I developed an obvious 'lump' and the GP gave me an emergency hospital referral, basically thinking I had cancer, which was pretty scary. However, nothing was identified, and I found out from the Facebook group that swelling in this area is a common side-effect of the steroids.

I really wish you luck with it, and hope the steroids have kicked in!

Hi @theliverpoolone, thank you so much for responding so quickly! Im sorry to hear uou still have bad days, i was so ignorant about it i had naively hoped that it could be a 6 months course of steroids! I felt really low yesterday and was reluctant to take the steroids due to all thenside effects but put my big girl pants on today and took my first dose, 15mg. I'm 53 and going through the menopause, i only started taking HRT 2 weeks ago but think I'm going to stop, at least for now as its just so many drugs! One question, have you experienced much weight gain? I know this sounds so shallow :( and thanks for the heads up about the neck swelling! How did they treat that? Did it go down? Sorry for all the questions, i am really grateful to you for taking the time to reply to a complete stranger. Take care and i really hope you become wellnagain sooner than you think. Booboo x