hi, I’m wondering if there are others who have experience of RA improvement with HRT.
My RA is relatively well managed.. one year in.. have a love / hate relationship with methotrexate (many other posts on this!), but am generally tolerating it better.
I am having noticeable flares when I ovulate or pre menstrual/during period , (I’m 45.. not officially menopausal or peri but doctor says it’s very hard to be definitive). I also have a very short cycle of about 23 days, so these flares are quite impactful.
My rheumy consultant says there is a definite link with RA activity and hormonal activity. And so we’ve discussed me trialling HRT.
I’m a little apprehensive, but wondered if any others have or had similar experiences, or whether HRT helped considering I’m not officially menopausal.
Thank you
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Sapphire1701
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Well, it stopped me being homicidal! I think official menopausal-dom so depends on the individual. I went through menopause at 45 ( same as my mum) whereas the accepted ‘norm’ is beginning of the fifties and upwards. Peri-menopause can mess with your RA - it did with mine. T’was a blessed relief not to want to murder anyone onceI was established on HRT and my flaring settled too .
I have to say this was a long time ago as I’m now 71 but I well remember the flares with the hormonal surges which my own consultant at the time said were definitely linked. Hope you get an HRT you’re happy with (there are many variations) if you do decide to go on it cos at least your family won’t have to hide in the cupboards when you’re on the rampage……..!
Thank you.. it’s reassuring to hear that I’m not going crazy! I have read a lot about RA and hormones.. and I had been pre-warned..
I will def give HRT a try, have felt so rough past 2 days.. honestly feels like a constant fight at times! I only live with my daughter - 15 - but yes she sees me at my worst, albeit I think now she understands..
thank you so much for replying, it’s really helped x
Oh I'm sure this is a hot topic!! I was already on HRT when I was diagnosed with RA aged 56 but changed it to one giving me more Oestrogen than previously as I thought this might help with joint pain etc. The problem is, I'm now 61 and keep thinking I should try to come off HRT but my RA is under control most of the time (25mg Methotrexate subcut) so I am too scared to rock the boat !! I am so tired all the time and have put on a bit of weight since I changed HRT but keep thinking things could be worse!! I think if you've discussed it with your GP and Rheumatology team and they're in agreement, it might be worth giving it a go. You can always then decide it's right or wrong for you.... Good luck x
I think it is definitely a topic that doesn’t seem too well explained.. but then I think ‘women’s problems’ have always been diminished..
sounds a difficult decision whether to come off, it’s so hard isn’t it. You get to a relatively stable place and then something new comes a long.. the tiredness for me had been improving..until recently..but I completely hear you.. a tiredness other people don’t really understand..
Was on HRT at 47, long before being diagnosed with RA. Personally wouldn’t be without it and when I am (for operations) I have hot flushes every 15 minutes but yes; also on it to help joints (OA and RA). If it doesn’t suit you can stop/change.
I was on HRT from when I was 46 long before the RA diagnosis. I felt great on the patches and I took it for over 20 years. It definitely helped with the RA too. I cant take it now, says my doctor, but I would if given the chance.
Thank you this is really reassuring to hear.. I’m sorry you can’t take any more when it’s helped you… thanks for sharing I appreciate it. I’m definitely going to try it x
I was same as you and if I had my way I would stay on the HRT untill I died , but was told I had to come off it as I had. Heart attack, the advice has now changed and they say it is ok if you have had a HA. But I’d been off it so long and I am nearly 70 but am still getting hot flushes and swears , they never went away . Dr says I could try Hrt again but the gel , so I gave it a go but dose was so small it did nothing , at the time I was at doctors every 5mins whith one thing and another and hospital appointments coming out my ears for RA and Thyroid ect that I just couldn’t be arsed with it , so didn’t persue it, wish zi had , it may have sorted a few of my problems
I’ve not tried HRT however my RA is definitely linked to hormones. It started soon after childbirth and I had a lot of problems conceiving again because of RA flaring. After completing my family I had a merina coil fitted (they are a bit like marmite -you love them or hate them) and that has helped a lot.
Ah well interestingly I had my Mirena removed 3 months ago, as had, had it in for 7 years.. so I think possibly why I’m feeling the hormone fluctuations more. At this time I don’t plan to have another one, but is reassuring hearing that the hormone link is real and that others suffer too. I think I will give HRT and try and go from there..
There’s definitely a hormonal link for some people. My daughter was diagnosed with JIA (junior idiopathic arthritis-previously known as juvenile RA) when she was 11 (she’s now 17) I don’t think it’s at all coincidental that symptoms started during puberty, a few months before her periods started.
I’m 47 now and had quite a long chat a few months ago about whether to replace the merina coil or not. In the end we decided to as I’d had no problems with the previous two and this one can now stay in place until I’ve been through the menopause and I can still take HRT if I need to.
I’m sorry to hear about your daughters diagnosis, can’t imagine how that is for her at a young age.. I hope she’s doing ok.
At the moment I can’t face being gutted with another Mirena (long story) and don’t need it, as such. So will try HRT.. but yes when I was fitted for the last one, it was done whilst I had s laparoscopy and I remember the consultant saying then it’s good to keep in through menopause. So glad to hear you find it helps.
I don't know if this will help you but l had to have a total hysterectomy and oopherectomy at your age and started on HRT . l was told to take it forever and have had no problems with it since l developed RA 10 yrs later and l am continuing with it now in my middle 80s at a reduced rate l have had no problems with it at all.Hope this helps
Well I have just started on HRT at the grand old age of 60 to see if it brings any benefits. Anecdotaly and I think statistically the majority of sufferers of RA are female and for many it strikes after menopause so I for one am sure there is a link. So is my sister to the extent that watching me suffer she immediately went onto HRT and has remained on it ever since. My grandmother had RA and it struck immediately after she had a hysterectomy. Obviously whether to go onto HRT is a personal decision but I can say that had I known in my 40's what I know now I would have been on it like a shot. I also have osteoporosis which I understand is frequently related to RA and despite being on Risedronate since 2014 it is progressing despite always having had a very healthy lifestyle and early HRT would definitely have helped with that. Maybe have a chat with your GP about that aspect of things.
Thank you for posting about this. I have recently been doing a fair bit of searching previous posts on here about HRT and RA but haven't found very much. I have definitely noticed the link between my periods and flares and both times I was pregnant (and for a few months afterwards), my symptoms disappeared entirely. My consultant agreed with the link between hormones and flares when I mentioned it to her, but went on to say it's not an area with much research focus because of lack of potential financial benefit for pharmaceutical companies and being seen as a female issue. I am in the middle of an awful flare and have been wondering how much the perimenopause/menopause could be causing this (I am 47). Merina coil didn't work well for me either, but I might try to push for HRT too I think. Anything feels worth a go at the moment!
It’s worth going to see a private menopause GP initially to get the right advice; there seems to be a few that are not overpriced. GPS often do not prescribe a higher enough estrogen dose, ie 2x am/pm pumps of Estrogel gel is what I was initially on, then a year later I went down to x2 pumps.
I had a hysterectomy at 36 along with treatment for bowel cancer no chemo just surgery. After about 3 years I started to have menopausal symptoms and GP said I couldn’t be because they left my ovaries in but I insisted that they did a blood test and was able to say I told you so. I then started HRT eostrogen only. When I started having meno symptoms that’s when the RA kicked off too. I wouldn’t be without HRT as it does help with RA pain and flares. I’ve tried to come off it but learned the hard way that it wasn’t a good idea. It seems I’m not at any more risk with HRT than without so I would say try it and see. I was changed to tablets from patches but after a couple of days my hubby realised that they made me clinically depressed so have stuck with patches ever since I’m now 59.
Hi Sapphire1701It does sound like you might be perimenopausal, or at least heading in that direction - join the club! I had some dodgy perimenopause symptoms, mainly regular migraine and sickness. So I tried HRT patches for 3 months and experienced a marked worsening of RA flares (I'm also on Methotrexate). I even came on this forum to ask fellow members about other drugs generally used when MTX stops working as I thought maybe I just needed to have mu drugs changed. Hadn't even occurred to me that it might be the effect of HRT. Anyway, I came off it and haven't had a flare since. But perimenopausal symptoms still rage! So next step, I will see a specialist menopause doctor as many GPs don't really understand the ins and outs of HRT too well. I think that HRT can help with joint pain as it normally would with women who don't have RA. But I think maybe you just need the right mix/correct HRT balance for your own particular case.
But that's just my experience and my non- expert thoughts about it. 😊
Ah, yet another club we’d rather not be in! I’ve thought I was peri for last few years, seen my GP so many times.. fobbed off with, ‘have you thought about antidepressants’..when now actually think it was my RA..it was only having covid and being really unwell that my RA kicked in at great speed!
Well it’s useful to hear all experiences, I figure all I can do is try it for a while..
I agree too about GP’s and lack of menopause knowledge, or women’s health as in hormones altogether. It seems to be one area that is so often dismissed as ‘part of being a women’..when for some it’s completely debilitating. I’ve always had bad PMS..
thank you for sharing x
Hi, this is really interesting. I’m 58, had early menopause at 43 and around that time my RA was diagnosed so I’ve often wondered if there was a link. Never offered or even tried HRT at that time.
Have recently tried HRT hoping it would help meaning I wouldn’t need to escalate RA treatment and start on a JAKi, but 6 months on it there was no improvement at all for the RA. I had other unwanted side effects so came off the HRT and started on the JAKi, which has been good. However I still wonder if I had persevered or changed the HRT dosage whether there may have been improvements. 🤷🏼♀️ Good luck with it .
I have JIA which is similar to RA and I definitely found it felt worse just before a period. Now I am on a biologic and it is currently under control so I don't notice it as much.
I am aged 46 and on HRT - I have found it quite helpful, especially with sleep (the progesterone tablets). If you are still having periods they give you a slightly different regime to if your periods have stopped.
There is a lot of new thinking on peri menopause now. My understanding is that if you are in your 40s you are pretty much definitely perimenopausal and it goes on for about 10 years. Some people seem to feel it and others don't - my suspicion is that having an auto=immune condition makes it worse. There are some useful books you could look at - the one by Louise Newsom is short and helpful - Preparing for the perimenopause. There are some great resources on her website too.
Also as an aside, my mum in her 70s has recently started on some HRT for the first time and is finding it helpful, including meaning fewer trips to the loo in the night!
I would just add that definitely worth seeing a more specialist menopause doctor if you can as they tend to know a lot more than the GP - hopefully that will start to change
I saw someone privately - if that's an option for you I definitely recommend Manchester Menopause Hive - I saw her online. Afterwards she wrote to my GP and they prescribed the HRT. Newsom clinic is also highly rated. Hopefully there will be more on the NHS soon
Hi, my RA kicked off at the exact time I started with perimenopausal rumblings, and symptoms are always worse around my period. For me there just has to be a link with hormones, desperate for some research to be done on this to prevent so many women suffering, but has you said, 'womens problems'...pfft. . I have trialled HRT in a couple of forms but unfortunately the progesterone made me feel really low, and 'dark moods' so I've decided to pause it for now. Must admit I was pretty gutted not to have the magical response some people seem to have ...
The doctor I saw thought there could be a link to testosterone levels and autoimmune stuff too but I think research is at an early stage. I agree there must be a link with hormones -wish they'd find it! On the low mood, I have felt mildly depressed since starting the peri menopause and HRT seems to have helped a bit but not solved it. Lots of friends going on anti-depressants - maybe I'll go that route but a bit reluctant to add more pharmaceuticals to the mix. There is so much going on it is so difficult to untangle what is causing what, one day you can feel fine the next awful!!!
Hi Sapphire. I was diagnosed with RD 5 years ago at the age of 41, and like you I noticed from my symptoms diary that I kept, that I would seem to experience flare ups every 4-5 weeks. At this time I was on the progesterone only pill which had stopped my periods, so I can’t say whether those flares corresponded directly with periods but 4-5 weeks is consistent with my previous cycle. Last year, a well woman blood test indicated that my estrogen levels were very low, and I was experiencing several menopausal symptoms. As I was not experiencing periods it was difficult to judge where exactly I was re peri-menopause / menopause. Nevertheless my GP felt it would be worthwhile trying HRT to see if it helped my symptoms. Furthermore a DEXA scan had showed that I had osteopenia, so HRT would be beneficial in terms of future bone protection. I have been on HRT just under a year now and have found that my flares seem to have reduced in frequency and severity, and also that my energy levels have increased - still by no means back to pre RA, but at least some improvement!
Hi, although the RA consultants have never confirmed, I’m sure it was hormonal imbalances and stress of a traumatic delivery which caused my RA. I was 29 years old. Since then my cycles have been erratic and varied hugely in how debilitating they are or aren’t. At 44 I’ve had peri menopause symptoms, and got referred to a gynaecologist given my history. Mini pill best route for me and ok till for a couple of years but peri menopausal symptoms got progressively worse. I started HRT 2 years ago. Also came off mini pill. OMG. Never felt so awful! Back to GP who had special interest in menopause. She was fantastic. Really took time to learn about my RA, liaised with gynaecologist and researched. Changed my HRT meds and currently my abnormal cycle is controlled, my menopause symptoms reduced or disappeared and no side effects. I can’t say I’ve noticed a difference either way to my RA. Those meds still the same.
yes totally. HRT was a total game changer for my RA. I was being directed towards taking biologics and didn’t want to be taking injectables. I am on 2 DMARDS and have been reducing one of these meds now. I started taking HRT 4 years after being told I had RA and the effect has been very beneficial. I had several steroid injections when I was first diagnosed, fluctuation in my hormone levels really coincided with RA. Angry I didn’t get on it sooner, as my health was a mess for 5yrs prior to menopause.
Hi orangebox.. that’s really interesting to hear. I was taken off HRT as my mood was so bad, but have since come off MTX and my mood has completely changed. But my RA has got worse! Leflunomide so far not working.. and has also sent my WBC low so I might be taken off it..
My RA is definitely worse related to my hormonal cycle, I’m in lots more pain at varying times of the month so I may consider HRT again now my mood has improved. I’m being considered for biological depending whether Lef starts to work or not.. I’ve done 3 DMARDS now.
I would see a menopause GP specialist. I was given a higher HRT dose ( ie x4 pumps daily) than I would get with a random GP. There are several HRT options / maybe you weren’t on the correct on.
My view with Biologics is once you’re on them & if they ‘work’ how do you scale down your medication if your condition improves. Rheumatologists, in my view, are reluctant to taper medications. Injectables are a pain for travel, travel insurance .
Do an MOT
-are you taking Vit D, Magnesium, fish oil.
-are you eating high volume of veg everyday. Your microbiome can impact your mood.
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