Reflecting on my RA journey.........

[Braecoon]

Diagnosed in August 2014 with very high scores for RF and anti-ccp. Despite that, I seem to have mild symptoms and do not DAS score high enough for biologics, nor has my CRP ever been raised. Have failed on 4 DMARDs not able to tolerate side effects. Was a year without meds’ with Rheumys blessing but commenced on Tacrolimus in March 2017 due to some bone erosion in little finger and a toe. My main problems with RA are teno-synovitis (inflammation of tendons and tendon sheaths) in my fingers and wrists (so not the typical presentation of RA).

I have often wondered why I seem to be a medical anomaly. My brother who is 9 years younger was diagnosed same year (?genetic link) and has it aggessively and he was soon started on biologics. An interesting point, he is a smoker and I have never smoked. I have been on HRT since age 46 and transitioned menopause when I was 52, the same year I was diagnosed with RA. I am still on HRT at 55 and wonder if this is a factor in my mild symptoms and different presentation. An interesting point - could HRT be a ‘protective’ factor? It will be interesting to note what happens when I stop HRT. Interested to know if others were diagnosed during menopause transition?

[Simba1992]

Progesterone supplementation has shown to have a possitive effect on RA. Estrogen excess is inflammatory and seen by many scientists as pushing the immune system towards autoimmunity. Estrogen-progesterone balance is in fact an important factor.

[Simba1992 in reply to Simba1992]

Here is some reading that may interest you.

raypeat.com/articles/aging/...

[Braecoon in reply to Simba1992]

An interesting article but some what a bit dated now (1990s research). It also talks a lot about Estrogen excess during normal Menstrual years instead of replacement therapy. The more current controversies are the synthetic vs bio identical hormones.

It just goes to show how little we still know about the human body and all it’s interactions (endocrine, neural chemistry systems to name a few).

[allanah]

Interesting ideas.

I often think of that myself as my menopause definitely kicked my symptoms in!

Keep going tho and get the right treatment for you . Xx

[nomoreheels]

It's certainly something I've pondered on before, if hormones played a part in my RD. Certainly I'm convinced mine has a genetic link as my Nan had it so possibly brought on earlier as I started with symptoms around the same time? Postmenopausal now & thankfully compared with some I've had an easy ride, no HRT & I've coped quite well.

I'd take any Ray Peat info with a pinch of salt. As you noted many references are yonks old, I mean how can something from back in the mid '70's up to 2000 be relevant now? Much has changed on the subject in 40 odd years.

[Simba1992 in reply to nomoreheels]

If studies are old they do not make them less relevant if there is no newer scientific evidence proving something else. There are very few research scientists that are better qualified than Ray Peat and the understanding of human metabolism, the role of thyroid and hormones and their interaction is presented by him in a very thorough and knowledgeable way that I have not seen as of yet anyone else doing so well..We can go on forever trying to find superficial lack of this and that in what researchers are studying, instead of trying to understand what they are saying and how it may apply to you and your individual situation.

[Simba1992 in reply to Simba1992]

Even new research supports the old on the carcinogenic effect of estrogen. Just one link of many.

cumc.columbia.edu/publicati...

[nomoreheels in reply to Simba1992]

Well, that's me told off. We've discussed this before so I shan't rake over old coals. Suffice it to say we disagree & there are plenty of others in a better position qualification-wise who agree with me.

[helixhelix]

There's definitely something linked somewhere...after all why do three times as many women as men get RA &PsA? And why do so many experience the first symptoms around the time of the menopause?

The other thing to me is that both corticosteroids and hormones used in HRT have the same core chemical structure. They are both classed as steroids in biochemistry terms, which are a 'family' of chemicals based on 17 carbon atoms in 4 rings. Which strengthens my view that there is some link somewhere.

All I know for sure about me is that HRT makes a difference to my overall wellbeing and to the calmness of my RA. My previous GP was very relaxed about continuing to prescribe HRT for me as she said she'd had so many patients in a similar position to me that despite lack of hard evidence she was equally sure there was some relationship. My awful, evil menopause appeared just before the RA did by the way.

Anyway, early next year I will be trying to wean off HRT so I will tell you if the RA runs riot. But sticking to it right now as I have various gynaecological glitches right now, and doctor advises that I shouldn't alter my drug regime until these have been dealt with.

I am also sero-positive with quite high anti-CCP on diagnosis, and have blood inflammation markers that are always low. However I would not describe my RA as mild! Without the drugs I am completely incapacitated and in great pain, and as I have learnt recently with a sneaky RA that nibbles on joints very quickly.

[BlightyFiveStar]

I think this is a good point because so many women are diagnosed with RA in 40s and 50s when the body is going through major hormonal changes. I asked about links between hormonal changes and RA at a Rheumatology department conference the hospital ran and the response was that no one is researching that - I asked why not and the speaker (a Rh specialist nurse) acted like I was weird to even think there might be a link and said the hormone system is separate to bones ( I don’t think so - look at osteoporosis). I don’t rate her view! Hormones carry messages in the body that trigger things to happen, which as far as I understand is like cytokines carrying messages which trigger inflammatory responses and RA. A similar action. I wish the health system looked at bodies as one unit of interconnected systems which all affect each other, not in terms of hospital departments- ie we are rheumatology and we don’t think about hormones.

[Orangebox]

Hi - I have have a similar RA situation as you outlined in this old post from 2years ago - ie teno-synovitis (inflammation of tendons and tendon sheaths) though just my in wrists this has always been the main flaring site for me. I am also seropositive RA, with a CRP below 2, and developed RA around start of peri menopause, and found HRT has really helped stabilise my condition. I’m on 2 DMARDS & recently had v good blood ESR rates.

However over 5year period, I’ve also had 3x Corticosteroid injections in RH & 1x in LH wrist for teno-synovitis which have really helped.

Re your query about blood tests for MTX (I’m not on this) during COVID-19, I found my GP surgery were happy to do blood tests for med monitoring, when previously I have always gone to the hospital (for better access & flexibility). I then had a GP telephone call with results the very next day, with prescription - in London - I was impressed.