Menopause and auto immune conditions

[ruthypfdraper]

Anyone else here with an auto immune condition that has ramped up at menopause?

I have ankylosing spondylitis and really struggling just with low back pain and stiffness and other joint issues, plus carpal tunnel. Also have all the symptoms of peri - night sweats, mood swings, brain fog, dry skin and hair etc etc.

I'm on NSAIDS for the AS, it's doing nothing. I'm exercising, doing yoga, mindfulness, all the things that are supposed to help. It's not really helping. These symptoms are different from my earlier AS flares. I'm wondering if I'm hormone depleted and that is having an impact on the condition. I feel like menopause might join all the dots here...

I'm really sensitive to progesterone, have avoided the pill all my life as it sends me bonkers. Tried HRT patches once before, had a bad reaction to the progesterone then. Also have a family history of breast and ovarian cancer. I'd live with the risk and try micronised progesterone if I thought it would help.

Any insight or success stories?

No insight or success stories but a lot of sympathy. With hindsight I have most likely had some kind of inflammatory arthritis for years but menopause and trying HRT (oestrogen only) has tipped it over the edge and I pretty much ground to a halt this summer . I’m now undergoing tests and awaiting a diagnosis.

Sorry you are going through such a tough time. This isn't very helpful, I'm afraid, but I do feel that it is likely that my auto-immune condition (alopecia) is in some way sensitive to hormonal changes around menstruation. It morphed from the less serious areata version to the more serious universalis around the time of my menopause. And my first episode of the condition came at the age when I began having periods.

However, like many auto-immune conditions it is unpredictable, multi-factorial and just generally a bastard in terms of its incomprehensibility, so over the years I have learnt to supress all habits of searching for reasons and strategies for mitigation.

Thank you both for responding and helpful insight. Random, what you said is spot on. I'm searching constantly for reasons and solutions. It's emotionally exhausting.

Volterra, hope you get some help. Health services are so stretched just now x

Thank you. Fortunately I am just about able to go privately as my GP said I wasn’t eligible for NHS referral. Good thing as can as Rheumatologist said we might need to discuss Methotrexate- what happens to those who can’t afford to go privately? Absolute mess.

Sorry your struggling OP and wish I had an answer! But I know that there are some really knowledgeable posters on this board that can hopefully help.

I was diagnosed with Dermatomyositis and overlap inflammatory arthritis 2 years ago, coincidentally this followed me trying HRT and where I was then advised to stop it due to the condition putting me at a heightened risk of cancer. Just to throw a total spanner in the works I then developed a pulmonary embolism that was related to the autoimmune so now HRT is totally out!

I have radically changed my diet this last 18 months with some success. I was always leaning towards Keto but now I am much more plant based with fish several times a week. However, it’s not a cure and this month has been a particularly crap one for mood and night sweats. Incidentally my joints flare massively before my period, always amazes me by how much they swell but they do rapidly go down once it’s over.

I just get despondent when I keep seeing HRT hailed as the miracle cure (follow Davina on Instagram ) and I wish I could have it too!

Thanks powerpotpie

Yes, one look at this board suggests hrt isn't the miracle cure Davina suggests! I know it is for some but often complex. It's so difficult to know what is causing what!

I've finally accepted that I'm menopausal (I've had Mirena for donkeys years so no periods, but the other symptoms have gone off the scale in the ast couple of months.

I was diagnosed with RA ten years ago and after trying all sorts of meds for it and having hideous side effects with all of them, I managed the pain with industrial strength pain killers for years and managed ok. However, in the last year or so my symptoms became completely unmanageable - I was often unable to walk at all. I've recently started subcut methotrexate - not sure if it's working yet as it's early days.

I never thought that the sudden flare up of my RA could be linked to being menopausal, but the timeline would absolutely fit - my meno symptoms really kicked off at about the same time. I'd had the odd hot flush or whatever beforehand but the terrible night sweats/constant flushes/brain fog/palpitations etc all started then.

I've decided today to ask my GP about HRT - can you take it alongside methotrexate, does anyone know?

Interested, I'm coeliac and am struggling with what I assume (hope?) are peri symptoms quite badly (as opposed to I'm totally losing the plot). I did read on the Coeliac UK board that having coeliac can cause an early menopause. Not sure if that translates to other autoimmune conditions as well?

Definitely worth asking GP about HRT plus RA drugs. Sorry to hear others are having a crap time of it too. I've looked for research on this but didn't find much, no surprise there! I'm still undecided about HRT but speaking to my most helpful GP about it soon.

Hi. I have RA and take oestrogen only for the last 2 weeks of my cycle and it’s been a godsend in terms of joint symptoms. This was following a private online consultation at St Erne medical. I am peri not menopausal.

Are you not on any dmards for the AS? Uncontrolled AS can cause very similar symptoms to menopause.

No I'm not. It has only been diagnosed recently, but I reckon 20+years of flares. I'm on etoricoxib and it's doing nothing. Review in January.

So glad I stumbled across this thread. I’ve had Ankylosing Spondylitis for around 6 years and take Sub cut Methotrexate, oral Sulfasalazine and IV Toculizumab to keep me functioning. I’m menopausal and definitely feel my pain has got worse the past 6 months. I didn’t realise the menopause could be contributing to this. Has anyone else found HRT helped with symptoms/pain. Also, anyone find auto immune diets/keto diet help with pain? I’m pretty desperate to be honest as don’t know what other drugs they can give me.

I am trying to eat more of a Mediterranean diet but that's very hard to do with fussy kids, fatigue, and limited time. Met someone with AS recently who did low starch. Worked for her, she had stopped all meds.

I have hypothyroidism and asthma. Asthma got worse and I generally also feel "inflamed" a lot. Was diagnosed with hypermobility a few years ago. My joints can go randomly bonkers. Very achey. I'm probably going to have to give up red meat as I notice big reactions to that. Especially gravy for some reason I'm peri and not on anything. I'm also not exercising much which would probably help. Skin seems easily irritated and dry eyes.

Appt with go tomorrow. To discuss hrt.

Let us know how you get on!

Just popped on my first patch! Didn't expect it to be so easy...!