There IS a form of polymyalgic syndrome that is caused by hormone imbalances but I think it can happen pre-menopause as well. HRT sorts it as if by magic!
I personally don't like the use of the name "polymyalgia rheumatica" because it seems to block the attitude medics take to patients who turn up with the symptoms. There are a lot of underlying causes that produce a similar clinical picture - and different things work for different causes. In fact, I'm not alone and someone heavily involved in research for PMR and GCA said to me the other day she thinks it should be renamed "corticosteroid-responsive polymyalgic syndrome" which is basically what I've been saying for the last 4 years. And it doesn't come in packets for different ages either!
Hello bowler. I don't know if the Vagifem could cause a flare as its effects tend to be localised specifically for the atrophic vaginitis.
As for the question as to whether the menopause can cause GCA/PMR in some women, it is not impossible that the decline of oestrogens over time following menopause could be implicated. Oestrogens profoundly affect the immune response and, while genetic and environmental factors also play a role, altered oestrogen levels and predominance of different types of oestrogens after the menopause might explain why it is mainly post-menopausal women who suffer from certain autoimmune diseases.
Ever since I was diagnosed with PMR I have been wondering about the potential effects HRT might have on PMR/GCA - in other words whether it helps it. I intend to ask a rheumatologist if I ever get the long-awaited referral!
I see in my leaflet with the Vagifem that the common side effect is headache, so maybe it's "aggravating" my GCAPMR ?
I have only been on it just over a month, and down to just 2 a week, which was the plan from the hospital Dr. so hopefully with a low dose the headaches will disappear.
I'm not very happy using oestrogen at my age [ 69 ], and with the the Endometrial Hyperplasia it can make it worse. However the Vaginitis was so bad that I didn't have much choice after having tried other remedies, also it was causing me to have lots of urine/kidney infections which I dont really want with stage 3 kidney disease.
I am due to see my Rheumatologist next month, so I will have a few questions for him.
Hello Bowler. I can sympathise with you as I have a similar problem, including urinary and kidney infections, and was also prescribed Vagifem. I stopped using it because I was getting severe vaginal pain, nausea and stomach pain from it. The GP said 'that can't happen as its effects are localised'. Well, doctors should listen to us and not make assumptions!
So, I do wonder if it can aggravate some autoimmune diseases (oestrogen helps others e.g. Lupus strangely enough) and who knows, PMR/GCA could be one of them. More research is really needed.
I now use non-hormonal Replens and it helps somewhat but it took time.
Just to add to the mix, I had a bi-lateral total hysterectomy aged 34. I have taken HRT since the operation. Albeit it was slowly brought down to 0.625mg (1 tablet) per day after two years when I started on 6 per day.
I had GCA for five years starting when I was 68. In remission for two years. Still taking the HRT (Premarin),
It does seem doubtful then that HRT is protective. Perhaps there are other hormones at play, either in excess or lacking, in older women. It seems nobody really knows other than the possibility of a link
I seriously think that my PMR started when I had finished with the menopause. No one has ever said it was down to that but up to and during my menopause I was as fit as a fiddle. I have had PMR now for 18months and been on prednisilone for a year now. I am unable to get lower than 4 or 5 mgs. The rheumy has talked about putting me on methotrexate, I'm not too sure if I want to do this but it seems it could be another treatment for PMR. Thoughts anyone??
When you try to get below 5mg how are you reducing? If it is 1mg at a time - bear in mind that is a 20% reduction - and a reduction should never be more than 10% of the current dose. I couldn't even manage 1mg drops overnight at ANY level - it takes me 5 weeks to get from a dose to the dose minus 1mg, and that's provided I have no problems. Many doctors like patients to hang around at 5mg for months (some even up to 9 months) before reducing further and it seems to allow the body (in particular the adrenals) to catch up. But below 5mg - SLOW, SLOW, SLOW!!! Even consultants are trying spreading the 1mg over weeks - and tell us it is working.
worriedaboutPMR, why is your doctor in such a hurry to get you off Pred? I don't know what your starting dose was, but to get down to 4/5mg in a year is nothing short of amazing to me. Even the most conservative estimate is 2/3 years on Pred to really stamp out the inflammation, but there are lots who take a lot longer than that.
I'm doubtful that methotrexate will help a great deal at this stage. I tried it when I had been on Pred for about 10 years and partly due to other problems unable to get below 17.5mg. It did help for a short while, but it also left the door open for a terrific GCA flare and following that it just stopped working. I took it for 2 years in all. I was reasonably lucky with the side effects but they can be horrendous.
I'm also not sure about menopause problems either, I had a total hysterectomy at age 34 and was on HRT until I was 60. I can't reconcile the onset of PMR with that, but it may be that others are more sensitive to the hormonal alterations?
I'm new to this site and am finding it very helpful and interesting. I was diagnosed in November 13 with PMR and GCA although my biopsy was clear it was probably because it took almost three weeks to get it done.
I too had a total hysterectomy when I was 43 and am now 66. I came of HRT after 2years because it made me feel ill. I eventually found the only thing that helped was a herbal remedy I had from a homeopathic practitioner.
I was put on 50mg of pred because I don't tolerate steroids well and am now down to 17.5 but am experiencing back and shoulder pain and am exhausted most of the time. My GP seems to want to get me down as quickly as possible perhaps because the side effects are affecting me badly but the thought of going back to how I was is not an option.
This is a very unpredictable condition don't you think? And one that seems to throw up all sorts of other problems that we have in common. Has anyone else suffered from fibromyalgia too? I have had this condition on and off for many years although in recent years in short bursts.
I live in solihull West Midlands and would love to know if there is anyone close to here, or any kind of support group. Would love to hear from you!
Yes, I've got Fibro, too. I've got Gabapentin and Amitriptyline both of which do help. As I also have peripheral neuropathy these two also help with that. I've got Tramadol for pain relief but to be honest, it does very little for the Fibro and the neuropathic pain.
I do rely a lot on distraction techniques to help with the pain during the day and of course there is the beloved 'pacing' of jobs/chores. I call it 'pottering' and I am fast becoming a qualified potterer!
Of course there are those whose lifestyle (working/children/home issues) don't adapt to the pottering so well, but I think it can be incorporated into most lives,
Hi Bowler, I also, have wondered about the effects of lowered estrogen and progesterone. I have started taking the herb, "oil of evening primrose". I switched to it, during menopause, because I was reacting to artificial estrogen and progesterone mix Premarin, my doctor was using (I think it was when they made it from horse urine and it was too strong.). It , the oil of evening primrose, helped then with the symptoms of menopause and hot flashes. I take it now, with fish oil. I am feeling better. I believe the GCA or inflammation may be still there (dealt with the by 3mgs of medrol and methetextrate) , hopefully not for long. I also have considered that connection. May be one. thanks for your post. I believe the more we know and find ways to deal both with the GCA/PMR and the medication, the better our chances are for decent health in the coming years. all my best, Whittlesey
Hi Whittlesey.. I was on Premarin in my mid 40s due to a Hysterectomy . I am now 67 but I felt quite well on HRT but I also took Evening Primrose Oil as I started to get Migraines and Fatigue but i put that down to post op recovery and after returning to work and balancing a home and a family . I was diagnosed with PMR 9 years ago I was taken off the HRT and was also told to stop the evening primrose oil even though I felt it did me good but it was stated that it didn't go with the steroids . I have always felt that my PMR was Menopause related as I have always had constant exhaustion. At the moment I am getting over a nasty PMR Flare-up , I have had some bed- rest and trying to monitor how high I go back up on the steroid . At the moment the highest I went was 17 mg and I felt better that day ,yesterday I tried 16 mg but had a more painful day and the headaches and jaw pain is back as well ,so I will go back to 17 mg today and probably stay at that for a few days .. I don't want to bother my GPAgain and you don't get the same Dr every time . Anyway IS IT OK to take evening primrose oil with the Steroids ?? I can't take the Fish Oils as I have a very sensitive stomach but I eat lots of fish anyway .. Best wishes and thanks for listening .I just want to get up and get on after this flare . trish29
On the subject of hormones and PMR/GCA, there was a very interesting presentation at the last PMRGCAuk Members' Day by a nutritionist, who considered that the high rate of oestrogen versus progesterone is one of the reasons why he believes autoimmune diseases are so much more prevalent in women compared to men. He explained that women have higher amounts of oestrogen, and because of diet and lifestyle factors this isn't being balanced out with sufficient progesterone. This can happen when women are in the 30s or 40s or once they reach menopause. When it happens there is a greater chance of having health issues, especially autoimmune issues. Too lengthy to quote the whole very interesting article but it can be read on the PMRGCAuk website here, in Newsletter Issue 9, Summer 2013.
Thank you Celtic !! I'm still struggling to get over this flare up .. I have gone up to 17 mg steroids as its the only way to get out of bed .. Will stay on this amount for a few days to see if things improve. Sorry I missed the meeting . love Trish 29. Xx
That virus has obviously set you back. Don't forget if you feel concerned you can ring the hospital rheumatology Helpline who will put any questions to the consultant if they can't answer them. Fingers crossed that the increase will work for you but don't be in a hurry to reduce if it does. That will just lead to yo-yoing the dose rather than completely stabilising the inflammation. This gorgeously sunny weekend should at least help to lift your spirits. xx
Thank you Celtic .. I haven't gone up too high straight away as I can hear myself being tutted at by my Medical Team , but I know through previous flare - ups that my body needs 17 + mgs of steroid but I'm trying to find the right amount to cope with my pain level. Still waiting on the Pain clinic. Yes the weather is Glorious and a joy to hear the birds singing .. Thanks .hope you are doing OK trishxx
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