I am after some wise words. At the time I wasn't diagnosed with HCA in November last year, I was told it would be an advantage to stay on HRT as will protect my bones etc. Saw a young GP a few weeks ago who decided I should stop it immediately. I was reluctant to do this as it has really suited me but I did so. I asked if I should do this gradually. No says he you will be fine. A week later I was exhausted with horrible pains in my knees. Saw a different HP who said it was a hormone crash and wanted me to go back to taking it. I got home and GOLLOPED the medication down. I now am really stiff with pain in my hips, buttocks, shoulders, still have the knee pains and my arms are weak. I had blood test forms and went to get a test this morning. I was doing really well at 15mgs of pred with no headaches. I got home and took 20mgs today to see if it helps. My fear is it may be PMR possibly kicked off by the hormone crash or could have had it bubbling in the background. Any thoughts would be much appreciated xx ps. It would be a bank holiday with this brewing.
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Elaine-W
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That's your Pred head taking over! Either that or technology thinking for you ! We've all written what seems like gobbledygook at times! Can't help on the HRT front, but would imagine stopping abruptly was not a wise move, really bad suggestion from doc who seems to have little idea on PMR/GCA and the stress connection.
Suggest you stick at 20mg for a while, and see if things improve - would hope there would be a fairly quick response.
Then take it from there, but don't think about reducing if you still have symptoms.
Thank you very much for your reply. I would normally question what a doctor says thoroughly but I was worried when he told me about the risks of HRT with GCA. Will do as you say and stay at 20mg and hope things settle down xx
That GP wants a good telling off and try and see him again, just to tell him what happened to you and perhaps then in the future he will think twice.
I have been on HRT (premarin) since I was 32 and without that my bones would not have been so well protected, the night sweats and hot flushes, which many women on pred (and not menopausal find come along) I would have been lying in a bath at night.
You were given HRT for a very good reason and GCA is not a good reason to stop it. In fact it helps with bones etc.
Just so you know I had GCA for 5 years before it went into remission.
I would reckon, with limited knowledge and not a medical person, that that hormone crash has really put you back and that you may well have to start all over again.... so going up to 20mg was a good idea.
In the meantime and if you can afford as the cost varies due to different locations. Bowen Therapy might help you along, three one hour sessions for three weeks you will know and they will tell you as well it is is not for you. It is totally non-invasive and it got me out of a wheelchair and also kept another contributor going for 5 years before she managed to get a diagnosis of PMR.
Make sure you that if you do decide to try it you get a qualified practitioner. Visit this site and read up on it all.
You can also put 'Tom Bowen in your search engine and read how it came about - something very good came out of Australia.
I will look at Bowen therapy. It has been tough with the return of menopausal symptoms and the lorry crash. I feel like a character from my childhood favourite film. The wizard of Oz. I am moving around like the tin man. Little steps little steps. Heavy metal style xx
I can only tell you what happened to me. I had been on HRT for quite a long time and had been pretty well - I'd been put on it in my 30s because of suspected early stages of menopause (it wasn't, it finally arrive at 57!) causing sweats and overwhelming fatigue. The HRT made a big difference. Then there was one scare about HRT too many and I decided it was time to stop, I was 50. Within about 3 or 4 months I was having the symptoms of early PMR. I have always regretted stopping. And I know at least one lady with GCA who has never stopped her HRT - who has absolutely NO bone density problems just as a by-the-by (I see she's already been here!).
I really would ask for expert advice rather than listen to a young GP - he may be right, but I think I'd take the rheumy's word on that aspect until proven otherwise.
says "There was a significant association between hormonal and reproduction related factors and the risk of developing giant cell arteritis in women given the diagnosis before the age of 70. The results suggest a possible role of oestrogen deficiency in the pathogenesis of giant cell arteritis."
More research is required and there is no guarantee that HRT would protect - but there does seem to be a role there.
Netdoctor in their GCA article says "It's vital that the prevention of osteoporosis is considered from the start and where necessary such preventive measures as calcium and vitamin D supplements, hormone replacement therapy or even the bisphosphonate drugs, such as alendronate (Fosamax) or risedronate (Actonel), are prescribed."
and frankly - if I were offered HRT I would far rather take it than alendronic acid.
Yes, there is a raised risk of cardiovascular events with GCA and also in patients on HRT so I do see where the GP is coming from. But untreated GCA, I would suggest - once you are on pred to reduce the inflammation that risk is lowered.
What I think was appalling though is that you were told to make a major change to your hormone status by stopping HRT abruptly. If you were to stop you should have been allowed to stop it slowly to allow your body to adjust.
Hi mate, I was put on Premarin (made for Lady Horses Urine!!!!!!!!! or so I was told. 32 and now coming up 80 and still taking 0.625mg per day (I tablet) I started on 6. Yup bone density still 97% although arthritis has come along, but then everything so far that Mam had, I had........what a legacy but I would not have swapped her for the world.
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