My question is has anyone noticed a connection with hormones?

[tmh66]

Yesterday I was really hormonal and I was in agony, didn't sleep well with the pain and took extra tramadol during night even though at night I take 100mg slow release. Still in pain now and tramadol is not helping much. Not diagnosed lupus fully, rhumy mow says lets say fibromialgia connective tissue dissorder with a side order of arthritis, underactive thyroid and pernicious anemia thrown in to the mix. Anyway hormones.... any ideas??

[uzi41]

Hi I have lupus and am on steroids, hydroxychloroquine and azathioprine and have been on them nearly a year, personally I don't feel any different but have noticed that just before my periods which are on and off ATM I am in so much pain, , literally everywhere. After the date of my periods I feel some relief up to a week maybe 2.

Will have to mention to my doc next time.

Take care. X

[Gillyg]

Yes after 22 yrs I can say yes I believe things are worse around that time. Ask your rheumatology doc to explain hope you have a good day. Xx

[tmh66]

Thanks girls, though I dont have periods anymore as I had an hysterectomy last year, I still have hormonal monthly times as I am now on hrt. im on hydroxychloroqine too uzi41. I am going to mention it when I next see rhuemy. Xx

[Chapter in reply to tmh66]

I thought I had read that HRT was not recommended for Lupus patients?

[tmh66 in reply to Chapter]

Thats possibly true but at the moment they wont commit to me having lupus, they just say its a fibromyalga/connective tissue disorder/ arthritis thing, but dont know where to put me as I dont quite fit anywhere though I have positive this that and the other and antibodies that hate me ??? So they just put me on another pill. At moment they say just self medicate x

[AlisonM]

Yes!! I actually think going on the pill 7 years ago triggered my lupus into full flight. Just had slight joint pain before, started pill- huge rash appeared!

Think it's why more women than men have lupus too. Def more achey at that time of month & interestingly was great when pregnant!! xx

[Jo883]

Hiya,

There's a definite connection with me also, I would say roughly 2 goodish weeks, then fatigue and joint pain increases, I seem to flare after that, I've found recently that an increase in steroids has helped me have a better ratio of time - I'm still trying to get my flares under control, but there's a definite decline hormonally for me!!

[Melinda]

9 out of 10 people with Lupus are female. I would say it has a lot to do with hormones. Mine came on with the menopause. When I was having periods, my aches and pains would be so much worse the week I was having them.

[dgleds]

hormones and stress are things that trigger lupus...and if you have lupus, must not take estrogen.,.can make your blood go funny...I got lupus through menopause times..and mom dying etc...all together time.

[Tigerlily4]

It's well known there's a link between SLE and hormones - presently still poorly understood. I was repeatedly told by my GP I'd begin to feel better after the menopause. First organs the SLE attacked and destroyed were my ovaries (by age 40) but things have become progressively worse since. Appears my GP was quite mistaken in her beliefs. Cannot recommend HRT - I ended up needing surgery for multiple benign cysts and thickenings in both breasts.

[Purpletop in reply to Tigerlily4]

Winds me up when doctors say that - my lupus was in part triggered by the menopause and without medication I would not be feeling any better now few years later !

[Tigerlily4 in reply to Purpletop]

I know many that's happened to Purple. Mine was triggered by pregnancy