2 Tapers or NOT 2 Tapers......: Hi again everyone... - PMRGCAuk

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2 Tapers or NOT 2 Tapers......

Fredddie profile image
13 Replies

Hi again everyone - hope you can help.

Forgot to mention yesterday whilst visiting my GP she informed me of the latest findings re taking HRT - the risk factors have increased.

I had a total hysterectomy 20 years ago and take 1mg of Oestrogen daily since which I am happy to do. However she has now advised me to come off and Taper slowly. Has anyone been in the same situation and if so how did it go alongside Tapering with Pred or is it wise to leave alone for the time being?

Any thoughts much appreciated as always.

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Fredddie profile image
Fredddie
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13 Replies
Yellowbluebell profile image
Yellowbluebell

I had been on hrt for 2 years when diagnosed with pmr. I was told it was fine to take both together. I did start a taper off it about 3 months ago but this was basically to see whether i needed hrt any more and judging by my lack of menopause symptons i am assuming i am over it. I have also been tapering pred since January 2018 with no problems. Good luck. YBB

Fredddie profile image
Fredddie in reply to Yellowbluebell

Thanks for reply and good luck to you too.

jinasc profile image
jinasc

I have been on HRT (Premarin) for nearly 50 years - yes I did type that correctly.

I had GCA for 5 years and now into remission coming up 9 years.

I know we are all different so I just thought I would tell you my experience.

No Medic I have dealt with ever suggested I come off it. I did try a couple of times, but those night sweats were back within 2 days.

Fredddie profile image
Fredddie in reply to jinasc

Thanks for reply. Gosh I thought 20 years was quite a long time. I think I may leave things as they are (don't fix what doesn't need mending) springs to mind.

jinasc profile image
jinasc in reply to Fredddie

Springs to mind reminds me of my Dad.

My GCA Rheumy said, after the Dexa Scan (bones 97% then and still the same 5 years later) ' hmmm wonder if it is the long term Premarin use'. Needless to say, I often wonder too.

Fredddie profile image
Fredddie in reply to jinasc

Yes my Dexa Scan is within normal range and I too wondered if it was helped along by the Hrt. Can I ask how old you are and do you take combined hrt or oestrogen only?

jinasc profile image
jinasc in reply to Fredddie

81 and I was 32 when I had a bi-lateral total hys.....

No idea what is in it......except the trial people told me it did have Pregnant Mares Urine in it, hence the name Pre Mar Rin.

What I do know is that you must take it at the same time everyday.

Fredddie profile image
Fredddie in reply to jinasc

Thanks for reply. I think I leave things be - my doctor was making me aware of the latest findings (they will probably change again)!

Bridge31 profile image
Bridge31 in reply to Fredddie

I have been using an oestrogen patch since my hysterectomy 32 years ago. I changed from 50 to 25mg about 8 years ago. I’ve always been told by my GP that it’s my decision. I thought the news had switched back again and that the risk factors had decreased ?

Risk factors have changed at least 4 times since I started !

My Dexa scan was excellent too.

Fredddie profile image
Fredddie in reply to Bridge31

Thanks for reply - yes they always seem to be changing the 'goal post'!!

Blearyeyed profile image
Blearyeyed

I haven't started tapering HRT yet as I am only 48 and the Gynaecologist said that to help prevent Osteoporosis it was advisable to continue it until age 50 , the benefits in her opinion until then outweighed the potential risks , but I have tapered a wide variety of pretty harsh mind and body altering drugs over my time .

My tip , therefore , whilst tapering any two drugs in the same time frame that don't have to be tapered at the same time because you are changing a particular part of your medication ( as in one for another) is to start the tapers two weeks apart.

This allows you to go through any days of withdrawal and any potential withdrawal side effects separately and allows you to have got stable from one taper before doing another.

Its better not to have a double whammy if withdrawal side effects from two drugs at once , and stops you getting confused as to which drug reduction is causing the symptoms.

Eat light , nutrient rich meals and have more fluids on the first few days of each taper of anything and make sure that they are more restful , relaxing Pacing Days too , so your body only has to cope with adjusting to its internal changes , not also suffer the Stress of alot of activity

( good or bad ).

Take it slow too if you need to , as allowing your body that extra time to adjust coming off any drug ( even food supplements) is more likely to be successful and prevent triggering any sort of rebound pain or response.

My friend started tapering off HRT recently and said that it was like having a mild mini menopause for a month with a few mood swings , some headaches , breast tenderness , minor water retention and some hot flushes . Nothing like the Menopause symptoms she was having before HRT , just similar , Just so you are prepared.

Good Luck xx

Fredddie profile image
Fredddie

Thanks for good advice. A mild, mini nothing would be nice!!

PMRpro profile image
PMRproAmbassador

Having developed PMR not long after stopping taking HRT, nothing would induce me to stop HRT AND reduce the pred at the same time. It is also a rather stupid thing to do and very unscientific: you have no idea which of the two changes is causing any problem that may arise.

But remember - sweats and aches are common to both menopause and PMR/pred

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