Posted , 14 users are following.
I was asked to reduce my HRT patches last year as I’d been on them for many years! As I was reduced from 75 to 50 then to 25 I started to have sweats, aches and pains!
Is this a coincidence or is there a link?
I’ve asked my doctor if I can go back to 50 but she says wait until we’ve got the other problems sorted! Am I being fobbed off?
0 likes, 21 replies
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kate50809 anne28129
Posted
I was on HRT for many years and only came off because I couldn't face going over it every six months with my GP!! I was allergic to the patches so I had tablets. I cut these up and reduced .75 for 3 months then .5 for 3 months and I can't remember how long I took a quarter for.
I was off them long before I developed PMR. The doctors don't seem to like us taking it anymore and I can only say the symptoms did pass fairly quickly after I stopped. I suffered more from terrible gripping cold than hot flushes hot flushes and I don't think my thermostat has ever fully recovered! Of course, now with the pred it's confused again.
Sorry I can't be much help.Good luck with your decision.
Kate
diana21296 anne28129
Posted
I have taken an HRT gel in a sachet for the last 25 years (on the lowest dose now, 0.5mg) and plan to stay on it for life. I tried to come off it 10 years ago and couldn't hack the awful hot flushes after six months of trying, so went back on it. My GP has no objections- the benefits out way the risks at such a low dose and it supposedly helps against osteoporosis and heart disease.
margaret89358 anne28129
Posted
GP us happy for me to continue with HRT as is my rhemy but it just doesn’t work. Will have to wait until PMR. Good luck Anne remember you are not alone a lot of us have the same symptoms. Don’t get too down.
anne28129 margaret89358
Posted
It’s good to know there are others feeling just like I am!!
I can’t wait to get off the steroids but also realise it will be a slow process!
lodgerUK_NE anne28129
Posted
I have been on HRT (Premarin) since I was 32. I take 0.625mg per day.
When I developed GCA neither my GP or Consultant ever said do not take it. Iwas on 60mg from Feb to Nov and then reduced down to 20mg (not all in one go) I had to go back up to 40mg, this time slowly down to 20mg, then another setback and back to 40mg, then slowly down until 5 years later remission. I still take 0.625mg per day and am much older.
Tinapoly1 lodgerUK_NE
Posted
How wonderful to hear of someone that went into remission. I just wanted to know since you are on such a low dose of 0.625 mg.if your Cushings syndrome went away or didn't you have the moon face, camel hump back,or massive weight gain in the mid section ? I too have been on HRT since I had surgical menopause at 37 and I am now 64. I got osteoporosis that year at 37 but after years of IVs they got stronger and all the more I want my estrogen injections ,that I get every 2 weeks, to help my bones out while Prednisone robs us of bone density. I watched my father die a horrible death at 70 with a broken neck, broken back, & broken ribs from long term steroid use for years for his rheumatoid arthritis. I also have been having unexplained hot flashes while on HRT and I haven't had them in many years so I think it is because our adrenal glands shrink down to nothing while on long term Prednisone so the hormones they put out ,called androgens , are no longer being produced. My endocrinologist told me it takes about a year for them to come back to full function & size after going slowly off Prednisone. Praying I go into remission soon but from what I hear on this site it averages 5.9 years so I am one year now with PMR/GCA . I hope this adrenal gland info helps to answer the questions of unexplained hot flashes by some of us.
margaret22251 Tinapoly1
Posted
EileenH Tinapoly1
Posted
Pred does not necessarily affect bone density. I have never been above 20mg BUT have been on steroids of one sort or another for over 9 years. My original dexascan was normal, 3 years later it was exactly the same, after well over 7 years on pred it had gone down very slightly but was still very much in normal range.
There are various people who got off pred and who have posted here:
https://patient.info/forums/discuss/zero-prednisone-discussion-450915
I'm sure lodger won't mind me saying that she gained a lot of weight (6st/80+lbs) with her high dose pred for GCA but I never felt she looked Cushingoid - just a large lady as she is also very tall for a woman. She lost no weight until she stopped pred altogether and then it sort of melted away without her noticing until one day her skirt fell down while out shopping! And since then she is back to her normal... (The 0.625mg is the HRT dose - wasn't sure if you realised that.)
lodgerUK_NE EileenH
Posted
EileenH
I never mind, the more info that is handed on the better.
You are right I was never Cushingoid. I was sad when my moon face disappeared after six months, as it took all the wrinkles away and the 'chicken neck' just disappeared.
I would just add one thing, my bone density was 97% on the first scan and is still 90% on the last scan 5 years ago.
No, I did not take any 'just in case' tablets.
I emphasize that such decision is a very very personal decision, which caused a bit of consternation for the medics, but they gave up when I said 'my body, my decision we will deal with anything that happens if and when it happens. Some stuff did, like a kidney infection etc, they were dealt with successfully.
As you will know, I would never suggest that anyone follows a very personal decision we are all different in many ways .
lodgerUK_NE Tinapoly1
Posted
You wrote "this site it averages 5.9 years so I am one year now with PMR/GCA ".
Just to cheer you up, I do know three people with under three years - but they were all in their 50's.
Averages were explained to me by EileenH so think 'Bell Curve' You just might be one of them which is at the bottom of each curve and not at the top. How
would that be. 
Anhaga anne28129
Posted
Hmmm, you have no issues caused by the HRT? Why won't your doctor allow you to stay on a dose of the HRT, possibly lower than you had been on, but at least enough to keep the menopausal symptoms suppressed? My stepmother was on something for decades, it wasn't available in the US when she moved there at about age 60 so she got a pharmacist friend in Canada to send it to her. When she was somewhere in her eighties a small cancer was discovered in her breast so she had to stop taking the HRT and had the tumour removed, which did cause her the usual menopausal side effects. But to my knowledge there was never any further issue involved with her having taken the hormone replacement for so many years. She died at 92 from completely unrelated causes (kidney failure as a side effect from a heart procedure, the dye used destroyed her kidney function).
ptolemy Anhaga
Posted
EileenH ptolemy
Posted
I was on HRT for about 13 years until one of the last scares was one too many and I stopped. A few months later PMR appeared - and I really don't think it was coincidence. Now they are saying again that it is OK for most people.
Anhaga ptolemy
Posted
Well there was a big scare about breast cancer a few years ago. I think it's acknowledged that it's not quite as high a risk as thought and not universally a problem, but women were being told to stop it cold turkey. We may be seeing the result of the fact that women, and especially older people of both genders, are never adequately represented in research, if at all, so we have to wait for problems to appear, or be discounted, through results of treatment over the years. I mean, just look at the disaster osteoporosis medications are proving to be, now that hundreds of thousands of people, mostly women, have used them without simultaneously been at least given good advice about nutrition and exercise. i don't know about HRT, really, but I wouldn't be surprised if there's an awful lot that has never properly been studied concerning dosage, and possible complicating factors in an individual patient's health profile.
ptolemy Anhaga
Posted
Anhaga ptolemy
Posted
😱
margaret22251 EileenH
Posted
lodgerUK_NE Anhaga
Posted
Anhaga
I could not resist this, I have taken Premarin since I was 32 (Bi-lateral Hysterectomy) now 80 and it is made and name from PREgnant MARes' urINe. ...
It could not me more natural in my eyes. 😄 I remember laughing my head off when the Consultant told me. It was on trial at that time................yippee.
Anhaga lodgerUK_NE
Posted
Oh, that's how they made the name. Sadly it's a hard life for the mares.
lodgerUK_NE Anhaga
Posted
It would be much worse if they could pass the urine, probably seriously ill.
Anhaga lodgerUK_NE
Posted