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I've been feeling a lot better overall and can't help thinking that reaching the 4 month mark with hrt patches has something to do with it.
Certain things also started to improve within about 3 weeks of restarting hydroxychloroquine too. I think I may be on the right regime at last.
I'm really pleased for you Brychni, long may it continue. xx
You may be interested in watching the NRAS Facebook Live broadcast from last Wednesday with Dr Nighat Arif (GP from BBC Breakfast and ITV's Good Morning) in which she talked a great deal about HRT and RA, It will be on YouTube soon I hope but in the meantime you can watch it back on Facebook facebook.com/nationalrheuma...
Oh that’s great news Brychni ! Hrt def made a difference for me too
Hi L - I seem to remember us messaging about this! I was originally prescribed it for migraines and it hasn't done anything for that (another story) but slowly the major problem of my right arm in particular the shoulder just started to get better. whatever it is it's tackling the whole issue because both sides of my body - even though right is always worse - have seriously eased up. I just noticed day before yesterday that everything just felt better, not 100% but almost no resting pain and certainly able to use my arms more.
I was hugely sceptical at first and even told myself I'd give it a few months and then come off it but the unexpected positive effects have made me rethink.
I restarted hydroxy after a few months of not being on it mainly because what I know now was a flare started after nearly a year of being on it and I just thought it was because it wasn't working. If I'd stayed on it I think the resulting months of sometimes pure hell wouldn't have been nearly as bad. I think hydroxy too started to ease things fairly quickly after restaring. They say it takes ages to come out of your system so maybe that's why it kicked in so quickly.
Either way, I don't care what it is, I'm sticking to this now although I'm under no illusion that another flare could creep up, but ditching the meds last time was ust silly. All part of my denial that there is anything really wrong with me...
where are you with meds and HRT L? Do you take both? how has it been over the last year?
Excelkent. Onwards and upwards.
Interesting, as a locum Rheumatologist (female) recommended HRT to me over 10 years ago but GP refused.
Hi BoneyC - the big message to come out of the recent Menopause Awareness campaing is that it's never too late and it is now in the guidelines so go back to your GP and tell him straight. If he feigns ignorance then print them off for him!! There's a treasure trove of info on Dr Louise Newson's website.
There have even been trials with hrt being given to COVID patients to aid recovery including: men.
Where can I print this advice from please?
Hi Moomin8
this is the link for all the leaflets and booklets - easy to use and print off.
A few weeks on and I'm still a lot better than I was.
Good luck. x
Good, glad things are improving. I need to start HRT but for some reason keep putting it off. Maybe this will give me the kick up the bum I need
Honestly, I wasn't exactly afraid to start it I just didn't know enough. It helps to remember that it's not medicine, it's the hormones that your body already has but that it is losing.
One thing's for sure, it can't do any harm and that has also been proven.
After all the drama of me trying to ge to the bottom of the antiphospholipd antbodies saga, it turns out that yes, I'm at a slightly increased risk of clots. When I was told I thought it would mean I would have to stop the hrt but in patch form it is perfectly fine even for people at serious and high risk of blood clots.
Very happy for you. Keep it going slowly but steadily. Yeeeehaaaa.
Woohoo fab to here
Interesting reads. I am male with RA but initially diagnosed with Rheumatoid vasculitis in 2012 and I am also recently been taking Hydroxichloroquine as well as Prednisolone. and that has improved the RA. Just over a year ago I noticed that I had Gynaecomastia and blood tests showed that I had raised FSH, LH and Prolactin levels. Unfortunately because of Covid I finally had a face to face with the Endocrinologist consultant last Friday and we had a good conversation. After which he came up with the diagnosis of Idiopathic Hyperprolactinaemia and has prescribed a low dose of Cabergoline tablets. As yet we don't know the cause of the raised hormone levels but it could be related to one or other of the medications I take or even a reaction to the Pfizer vaccine. It's going to be an interesting study.
Yes, interesting. Let us know what comes out of it, meanwhile hope you're doing all right 😁👍
Got a banging headache now! Typical. For anyone following this though I have had some good news regarding the migraines. I've been waiting for literally years to get on proper medication and have finally been accepted to be prescribed Ajovy. Had a message from the clinic in Morriston Hospital on Friday.
Good Luck!
I’ve been on HRT since my early 40’s I can’t tolerate the tablet form but patches are great. I only have oestrogen replacement as I’ve had a hysterectomy but I’ve tried to stop them before and my joints are much much worse so I know some of it is about personal choice but I won’t be stopping it anytime soon. So pleased to hear you’re doing better though.
Hi - that's really interesting. I started on gel and tablets but the gel oestrogen was too much. did make me feel a bit weird. The patches are much more consistent.
As far as personal choice is concerned, after reading as much as I have I think every woman should take HRT instead of all the unproven supplements on the market.
What other meds are you on for the RD?
As I’ve had a recurrent chest infection and wracking cough for almost six months I’ve had to stop the JAK that I’m supposed to be taking (tofacitanib). I’ve just had a 5 day course of 40mg of prednisone to help with breathing and cough and it’s much better. I’ve had numerous antibiotics over the last few months non have helped much and two chest X-rays one which showed a shadow on my lung and the follow up which says infection has now gone I’m not totally convinced though. So answer to your question is zero atm the JAK is a new medication for me and I’ve only managed 7 days since it finally turned up in November lol. Moving forward though I’m seeing rheumy next week and immuno next month. I’d be lost without HRT though.
Good news, I wish you well.
Very Low
Swelling,pain and feeling very very low.
Feeling very alone
Feeling very low..
