Return to adolescence and not in a good way! - PMRGCAuk

PMRGCAuk

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Return to adolescence and not in a good way!

Daisyfield profile image
17 Replies

I was diagnosed PMR in April 2019...classic signs and overall had a good response to treatment. I haven't been completely problem free, but no big glitches. I do get exhausted especially when I have overdone things.

I abruptly stopped periods in April coinciding with PMR diagnosis. At least I hadn't had any menopausal symptoms I thought...though I did wonder about the night sweats...was that menopause, PMR, pred?

However this month my periods have returned with the full ferocity of pain, flow and mood swings of an adolescent, and I have been ultra fatigued and really achy (but not the original PMR pain). I wondered if i should up pred, but decided that hormones should level out again. I do wonder about the role and interactions of various hormones in the body and autoimmune disease.

Plus I have just come down with a stinker of a cold. So double whammy. All I want to do is sleeeeeep.

So just wondering if there are any other women out there about my age (52) who have similar problems?

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Daisyfield profile image
Daisyfield
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17 Replies
HeronNS profile image
HeronNS

If I were you I'd go to the doctor.

Daisyfield profile image
Daisyfield in reply to HeronNS

Maybe I should. I thought I’d sit (or sleep ) it out. I’m not so horrendously exhausted I can’t keep my eyes open. Just exhausted and fed up with this disease and it’s unpredictability.

HeronNS profile image
HeronNS in reply to Daisyfield

I'm much older than you. I haven't heard of this as an effect of either pred or PMR. It is unusual and should be checked. Have you, by any chance, been taking any herbal remedies? Dong quai, for example, can cause breakthrough bleeding but not, as far as I know, the effect you describe.

Daisyfield profile image
Daisyfield in reply to HeronNS

No herbals. Only mint tea!

PMRpro profile image
PMRproAmbassador

In the last stages of the pre-menopause periods can become very irregular and stop for a while and then appear intermittently. But after 6 months - I really think you need to get it investigated. Any bleeding post-menopause should be regarded as abnormal until proven otherwise.

Daisyfield profile image
Daisyfield in reply to PMRpro

When I googled (!) it defined menopause at 12 months without period. I sort of assumed I’m in peri menopause as it’s 6 months. But you’re right. Might be worth a check. Thank you.

HeronNS profile image
HeronNS in reply to Daisyfield

I think any doctor would prefer you check in under the circumstances if only to make sure things are in fact ticking over all right and put your mind at rest. If there is a problem, best caught sooner rather than later.

in reply to PMRpro

Absolutely agree that this needs to be checked out.

During menopause I stopped for 2 years. Then had 6 months of normal periods. A year off then had a 46 day of moderate bleed, a 2 month gap and a 23 heavy period which abruptly stopped never to appear again. Because they weren't really heavy I just waited it out apart from blood tests for anemia. So it's always worth a trip to docs.

Ps if you feel like a sleep you shod do it.

Hellyowl profile image
Hellyowl

My menopause last about 5 years with periods up and down from around 52 to 57. I was not on any medication at that time and my hormones were extreme.

Daisyfield profile image
Daisyfield in reply to Hellyowl

my gut feeling is that it's normal, but my PMR has joined the hormone party on my body. But from advice here, might go to doc just to check.

Hellyowl profile image
Hellyowl

Always worth reminding doctors that when they prescribe for us, we have female hormones and might suffer different side effects from men. I don't think they consider that enough, be interesting what doctor tells you. I always found they skirted around the menopause unless it was a female doctor who had actually experienced it.

HeronNS profile image
HeronNS

Hellyowl's comment made me think of something. I didn't experience what you have, where I might have headed off to the doc just in case. I had the good fortune to read Germaine Greer's The Change just as I was thinking I needed to talk to a doctor about the changes, not knowing any better. That book was an eye opener, and I just took up walking a lot. But in my case it was all over by age 50, and might have been slightly earlier except for the stupid dong quai!

Let the doctor check you for any nasties and if given the all clear you can then safely refuse any big pharma solutions you might be offered.

SanRaphaela profile image
SanRaphaela

I was diagnosed with PMR in Dec of 2018, a month after my 48th birthday. My symptoms appeared that Sept and my periods also abruptly stopped with the onset of the symptoms. Although, the hot flashes and other sleep issues suddenly appeared that summer. Then, without warning, I had a full period in March, April, May at which point I went to the doctor who, after testing for FSH, prescribed hormone therapy to help cope with the symptoms of peri-menopause. While my PMR pain had been well managed on prednisone at that point and I had successfully tapered, the hormone replacement therapy really made a difference in how I felt overall -- energy, sleep quality and overall feeling of wellbeing -- in addition to resolving the unpredictable periods. I know there is no definitive link between perimenopause and PRM, but I do feel it contributed to the mix of "stressors" that resulted in PMR. And addressing it, in combination with the other things I do to help manage my PMR, has made a huge difference to getting back to feeling like me and having (for the most part) the same active schedule I had before. One last thing -- included in the "things I do to manage PMR" is reading posts in and reaching out to this group. It has been tremendously empowering and reassuring to hear other's experiences and get advice. It is for that reason that I wanted to share my experience with perimenopause timed with PMR's appearance.

PMRpro profile image
PMRproAmbassador in reply to SanRaphaela

I had been on HRT for some years until a final scare was one too many and I decided to stop. There wasn't any return of the symptoms that had led to me starting HRT but within a few months the first symptoms of PMR appeared. I have wondered many times whether staying on HRT would have protected me from the joys of PMR ...

SanRaphaela profile image
SanRaphaela in reply to PMRpro

Yes, I do wonder how they are all linked together and if natural hormonal fluctuations are, in part, why there are better days than others on the same dose of prednisone. I doubt the research will ever be there to tell us, but it seems anecdotally connected. I'm grateful every day for this forum to help me feel less alone and to explore these ideas.

Daisyfield profile image
Daisyfield in reply to SanRaphaela

that's interesting...similar here too. A google of oestrogen shows anti-inflammatory and also some pro-inflammatory effects...so I'm sure the hormone swings can have some relevance to PMR process.

My sleep is ok, and generally not too tired, apart from at the moment with a heavy cold, or if I've pushed myself.

Yes, agree reading these posts helps a lot.

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