PMR and Menopause

[PMR_Triathlete]

I’m not sure if previous discussions might already have covered this, but I wanted to share my experiences with PMR over the last 16 months in case it offers a glimmer of hope for anyone else out there. I first developed symptoms at the beginning of June last year. I got a quick diagnosis thanks to my Mum knowing about the illness through a friend (I’d never heard of it) and a pretty supportive GP. At 48 I was young, but I learnt on this forum that was not as rare as suggested elsewhere. I started on 20mg pred and finally could start functioning again! Over the next 12 months I gradually got myself down to 7mg, but was struggling to get any lower than this, feeling rough and was realising that the flares I was getting often coincided with the hot flushes etc of menopause (both PMR and menopause had come on suddenly and simultaneously for me). Eventually I bit the bullet and asked the GP if I could try HRT to see if this helped. The result is that I have experienced another small miracle much like we do when we first get our hands on pred. Between June and now I have got down to 4mg using the DSNS method and have gone from feeling like I had found my permanent ‘minimum dose’ to believing I might actually be steroid free within 2 years of this debilitating disease striking. I appreciate there may not be many of you in my position, but if this helps even one person it will have been worth me putting it out there!

[PMRpro Ambassador]

There is a version where the PMR symptoms are due to an imbalance of hormones at the time of the menopause. I think you are only the second person I have come across on the forums - the first lady had gone for her smear test and could barely get onto the couch. The nurse spotted it and recommended she saw a particular GP in the practice who was familiar with it. I can't find anything in the literature though.

[PMR_Triathlete in reply to PMRpro]

No I’ve not found anything in the literature. The closest I’ve found is with reference to menopausal arthritis and the symptoms and treatment for that just didn’t ring true for me (whereas when I first read what PMR symptoms are I felt I could have written it myself, plus the pred definitely worked). That HRT is having such a positive effect too gives me a glimmer of hope that I may have found the ‘silver bullet’ for my own case of PMR 🤞

[PMRpro Ambassador in reply to PMR_Triathlete]

I had been on HRT for years and then there was one scare too many so I stopped, I was 50 anyway by then but as it turned out not menopausal for another 7 years! However, within months of stopping HRT the first insidious signs of PMR appeared. Would it have arrived if I had carried on with HRT? Like SJ, I wish I had.

[PMR_Triathlete in reply to PMRpro]

For obvious reasons I'm really interested in any potential link between PMR and menopause. As I said in my original post, for me starting HRT was almost as transformative for my recovery as when I first started pred. Looking on this forum one of the things that really strikes me is the number of women floating around the 50 age mark who are being struck down with PMR. Maybe in years to come someone will bother to research it...

[Pamk1949 in reply to PMRpro]

That’s exactly what happened to me. HRT for at least 5 years, then when stopping HRT, PMR appeared 3 months later followed by GCA. I went back on HRT while first symptoms of PMR appeared thinking that was the problem but by then PMR persisted. I’m still on HRT now (estrogen is transdermal) because of osteoporosis. I’m 70 yrs old now, but I think I’ll keep taking it even it it helps a little for my bones

[SheffieldJane]

Try to stick with the HRT. I wish I had. I only stopped because of a rash of adverse publicity and subsequently had a bumpy ride.

[nickm001]

Were you able to restart your training for triathlons?

[PMR_Triathlete in reply to nickm001]

My training has been quite hit and miss since I got ill to be honest, I tend now to treat it more as keeping myself fit and active rather than training but yes, I am managing some sessions. I find cycling is less painful than running and swimming for me. I’m currently focusing more on getting (hopefully) fully recovered before I get back to training proper and in the meantime just trying not to lose too much fitness!

[nickm001 in reply to PMR_Triathlete]

Good for you!. I tried too hard too soon and hurt my knee, and could not run since. Still biking and swimming. I find the swimming the easiest and almost therapeutic but since Covid 19 I had to stop swimming too. So now biking is the only thing that keeps me fit. BTW, because of PMR and age(71), my main goal is to stay fit . So I am trying to be gentle to my body :)/

[PMR_Triathlete in reply to nickm001]

Yes I really like swimming, but although my hips were the first to go with PMR, it has lingered stubbornly in my shoulders although that is slowly easing. Cycling has been a lifesaver for me keeping me sane!

[Curlgirl]

I woke this morning unrefreshed after another night of disturbed sleep. I have been suffering with insomnia and night sweats due to the menopause for a couple of weeks now and my concentration is being affected at work and I'm making silly mistakes. I have been toying with the idea of trying HRT but was unsure how it may affect my PMR. I'm currently on 12.5mg pred.

Last year I took a natural supplement -Starflower oil which helped with the hot flashes/night sweats but they have come back again with a vengeance.

After reading your post I feel more positive and that I may try HRT myself. Thank you x

[PMR_Triathlete in reply to Curlgirl]

I held off for a long time as I didn’t want to be on yet more meds. Eventually I decided to give it a trial for just a month and within a couple of days I felt so much better I’ve stuck with it. I can’t promise it will be the same for you, but it has allowed me to really turn a corner. Best of luck!

[PMR_Triathlete in reply to Curlgirl]

Just reading your bio Curlgirl and you sound like you’re in a really similar position to me! I’d be interested to hear how you get on. Please know there is light at the end of the tunnel even if it feels such a long journey at times...

[Coffeebeans]

Very interesting and glad you've reduced so well.

I've been on HRT (plus testosterone) for 2 years now for severe peri symptoms with PMR appearing after a year. I really think they were linked with thyroid problems appearing after childbirth then this after peri. Too co-incidental.

I'm not finding HRT the magic bullet but being a member of menopause forum tales of pain, joint pain etc are extremely common.