Email a copy of 'Burning Question of Hormones: Breastfeeding, Contraceptives, & Menopause in Rheumatoid Arthritis' to a friend
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Interesting. What about those of us with surgical menopause? I am under 30 and already been post-menopausal with no hormone replacement for over 2 years. I’m so desperate to be in less pain that I would do anything.
Me too! I had a total abdominal hysterectomy at age 41 in March 2009 and in May 2009 I woke up with my right jaw locked. I was misdiagnosed until the symptoms avalanched by affecting other joints as the year progressed. Even my rheumatologist thinks the hysterectomy was the trigger.
Menopause in early 40s, RA smack down at age 49 (things were building up to that point). Quite smoking at age 46 and things really went downhill, RAD-wise. Now at 51, my case is pretty mild. No biologics here, just good ole mtx and plaquenil.
From age 44 to 49, I kept telling everyone that something was wrong, but no one listened— “It’s just the change!”
Kelly,
Very interesting, I’ve always wondered if the complete hysterectomy when I was 36 had something to do with the expression of this disease when I was 39. I have moderate RA and still take bio identical hormones. After 12 years with RA I’m now officially considered disabled. I don’t want to stop taking the hormones because it seems any little change to meds brings a big change in the “moderate” RA. I’ve been thru the pyramid of DMARD’s and I’m currently on a long term anti-biotic therapy of minocycline and anti-inflammatories.
Elizabeth S.
OK, now you have a subject I really want to see addressed more often! After 2 years of aggressively seeking medical help with staggering RA pain and joint damage I instinctively felt that my hormones played a big part in the disease, yet no doctor said so. I found a compound pharmacy that recommended a doctor prescribing Bio-Identical Hormone replacement therapy and I made an appointment. The doctor did not impress me but I started 2mg of Estriol daily and within a week saw enormous positive changes in my health. I have been taking the Estriol, and now progesterone for a year now and they continue to improve my health, RA flare ups, fatigue, difficulty thinking, and tremendous bone crushing pain all 75% improved. I hope in the New Year once I get insurance again (another long story) to find a skilled OBGYN (?) doctor who and fine tune my treatment and maybe make even a bigger dent in my disease.
I’d like to know why I went into remission with both my pg’s, had a massive flare after, and currently around ovulation feel better, and premenstrually feel terrible. I’d tracked it and it is consistent enough to plan activities around. Hormones affect autoimmune diseases a lot (friends with lupus and ms say the same).
Hormones and phenotypes – now there’s a big topic! Just to add to the mix, I had a couple of “flares” after the birth of my second child that my then doctor said was some kind of arthritis and I thought that was crazy since I was 28! Then one a year later after a miscarriage. I was so involved in my life and kids and the emotional rollercoaster that I just didn’t pay attention and the symptoms went away and didn’t come back until I was 56. Menopause at 50 – a little early but not silly early – two years of hormone therapy for hot flashes, etc. Everything was fine until my PCP thought my cholesteral was a bit too high and put me on statins. I had that rare reaction of extreme muscle weakness and pain but it took almost a year for my PCP and I to realize it was the meds. Statin myopathy. I was sick but as soon as I was off the statins I started to recover my muscle strength then two months later – bam! RA! I suspect it was the statin insult to my system that finally put things over the edge, but really there is no data out there to support that thought so it’s just me thinking.
My rhuematologist would classify my RA as moderate and I would as well. I don’t have symptoms as severe as some I have heard described here and I have periods where these syptoms remit some, waxing and waning. It has gotten worse since diagnoses. Plaquinel only slightly effective, MTX considerably more so but I am still having significant flares and daily pain and stiffness and swelling. Just now on a biologic. I am seronegative. Am I the phenotype they are talking about? Hmmmm, not sure, maybe…
I’m very interested to see what others say about this. I was diagnosed shortly after the birth of my fourth child, although drs suspect I’d had RA / PsA for a few years prior, and was still breastfeeding when I started Plaquenil. I did definitely go into remission while pregnant (and am wondering if drug companies are looking into hormonal treatments similar to pregnancy to treat RA; one of my friends has responded poorly to the standard arsenal and her dr is trying her on pregnancy hormones as a last result).
I am wondering what effect the RA / PsA / drugs have on the endocrine system. I had always thought the fevers and the cold sweats were part of the disease, and I’ve had friends mention they also had those, but my RD acts as if she is perplexed at the mention of fevers / cold sweats / brain fog.
Is it possible that RA / PsA can cause earlier onset of menopause? Is it possible that the medications we take cause early onset (prednisone, pain meds, DMARDs, biologics)? Or are those symptoms merely more of the less well known / documented symptoms of the disease?
Thanks for this topic, and I’m very interested to hear what you and others have to say,
I went into surgical Menopause when I Was 30 a year later started have extreme leg pain and after several Dr’s another year later was diagnosed with RA,Fibro and ankl. Always had a feeling they where linked.
Kelly,
Firstly, I apologize for not commenting much recently (although I have been reading).
This topic is very relevant for me right now. I am 39 and feel like I am experiencing peri menopause. It is difficult to track as I am on Mirena and have had no period for years (as is common with this IUD). I asked my rheumy about RA and early menopause, and he said it is more common with Lupus. I then asked my GYN, and she said I was too young. She ran some tests that came back normal. But when I read about peri menopause, I have every symptom.
I am very curious about the phenotype issue as well. I am a firm believer that there must be RA phenotypes, although I don’t fit the phenotype described in the article since my RA is moderate. I am, however, seronegative.
Thanks for bringing this issue to light.
Marie, we ALL just do what we can, please don’t apologize. But it does make me happy to see familiar people like you are 🙂
about the menopause – I don’t think they dont really know – I got completely conflicting answers about it over the past couple of yrs too – from the RA doc, the endo doc, and the gyn doc. Going around and around and nothing was ever figured out – I had to figure stuff out on my own eventually – they all told me over and over about my symptoms “That should not happen”
Well, they didn’t ask me! I’ve not had menopause, never will. Never borne kids, never will. To the best of my knowledge do not have an oestrogen imbalance and never will. Never taken any form of hormone therapy, not likely too.
Oh, but I’m different – I’m one if the 20% of sufferers who are male.
I repeat – they didn’t ask me ;-). I’m with Kelly when it comes to phenotyping sufferers and that sample population doesn’t look to random…..
always glad to see a guy’s comment here – we know it’s not a girls’ disease. 😉
Very interesting Kelly. I was in hospital for a week for what they thought was a joint infection… Turned out to be RA. This was five short months after my estrogen was turned off to fight estrogen receptive breast cancer. It’s been a year since RA diagnosis and now condition is moderate to severe. Breast cancer fight pales in comparison to RA battle….. I want my life back!
Thanks for posting this, I’ve been curious as I was diagnosed with RA and then within a few months was found to be peri-menopausal at age 47 (hysterectomy at age 42). But, contrary to the study’s findings, my RA isn’t mild or moderate but is severe and, despite early, aggressive drug treatment, has not stopped its rate of progression so that within a year it’s affecting all my limb joints plus jaw and ribs.
If the study’s conclusion is right, then the timing of my RA and menopause are co-incidental. So it’s food for thought, but I’m not sure what to do with it!
This is very interesting to me. I am 39 and although the blood test is negative, I was diagnosed with RA 1 month ago after being misdiagnosed for the past 8 months. I just started taking Methotrexate and for the past 6 weeks I have been having hot flashes and my periods have been late/off. I wondered if my hot flashes had anything to do with RA?
I was diagnosed with RA after the birth of my first son. Went off meds with second pregnancy and felt great but then had severe flare after birth. Now 16 years later I am peri-menopausal and have gone from mild to moderate with more frequent flares. I’ve been thinking all year that the hormones had something to do with how I’m feeling.
I truely beleive there is a connection with menapouse & R.A. I saw a acupuncturist about 3 months ago, in a middle of a flare & desprerate for help. I believed I was post menopausal, with no menstraual cycle for 24 mos. 2 wks later I had a Cycle.”I have had NO R.A. pains since. My new Homepathic GYN says Acupuncture balanced my hormones & adrenal system. Truely I was amazed & greatful.(Pain Free for 3 months). My Rhuem. Dr. Says there is no medical proof menopause is connected to R.A. I beg to differ. I know what I know. Happy & hoping to keep hormones balanced with supplements, & to stay in REMISSION.
Wow. I KNEW there was a connection. I had been on birth control pills for a long time and happy as a clam. Then at age 53 my OB/GYN thought it was time to head into “the change”. Did I ever! I stopped taking my pills in January and within 4 months my symptoms started making themselves known: swollen stiff fingers, burning aching toes, dry eyes. I tested negative for RF but was referred to a rheumatologist and thankfully was able to be evaluated within a few months. I have a mild case of RD right now and am just starting MTX treatments. (I’m keeping an open mind and positive attitude about that!) I am convinced that hormones played a part in delaying/modifying my disease.
A illite late joining this thread but I have a similar tale. At 48, starting having carpal tunnel symptoms in hands & wrists. Missed three periods and ankles and legs started swelling. My co workers called me ‘claw hands’ as I could not make a fist….all in good fun. Now seronegative diagnosis, on plaquenil, sulfasalazine. No period for four months and flare up ( I guess that is what it would be as I was fine for months) has my Dr prescribe a biological. Had my first Humira shot and huge improvement has been seen. However, not giving up the search for explanations and I feel like I’ve really found something. Will seek out a better OB/GYN and discuss these bio-identicals. I love this website, amazing job, Kelly!!!! You are a star!!!!
Thanks for sharing your info. I really appreciate your efforts and I am waiting for your next post thank you once again.