I am wondering if anyone knows of any possible treatments/solutions/responses to an increase in flare symptoms around the time of the month. Basically I always experience flare ups around 3-4 days before I have my period and then for a few days in to it (so for about 7 days). My strategy so far has just been to have regular paracetamol, and more rest. However, my cycles are a bit unpredictable and sometimes they are quite short (e.g. 19 days). so unfortunately, it feels like the number of flare free days in a month are reducing. An added complexity is that I am fairly sure I am perimenopausal - I am only 41 but my hormones have been tested and they do indicate I might be heading in that direction (my mum started going through the menopause at 42).
I am only recently diagnosed so I haven't discussed this in detail with my rheumy. But, what do your rheumatologists do/advise in this situation? Surely I can't be the only women to experience this problem??
I have a GP appointment next week and my plan is to ask for some form of contraceptive pill to try to at least try to regulate my cycles, although I know there is a chance this might not help. Any thoughts on this would be much appreciated.
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123MrsG
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Great post. Sorry you are suffering but my symptoms go through the roof during my cycles.
I don’t have a diagnosis of lupus.
I was put on a drug some time back called danazol , it basically blocked out all my hormones which was great.
Unfortunately I couldn’t stay on it as it was too unhealthy to take all hormone away.
From reading a lot of previous posts progesterone only pill seems quite effective but do run it by my gp or maybe see if your Rheumatologist department has a nurse you can speak to
I feel exactly the same although I feel like I am constantly glaring this last year after 4years of being able to deal with it with pain killers - I am sure hormones must have something to do with this at 44 and every 21 days I am sure the menopause is starting - I was started recently on mycophenolate thought it was working brilliant seemed to make me feel better for 4 weeks then I feel like it’s just not working as well anymore maybe it’s my hormones as well as people keep telling me that u get tired anyway- even though I know it’s not the same - let us know if you get a response from your thru my x
This is an important area of research at the moment and I know that Dr Chris Wincup at UCLH is very interested in this topic. I believe that for some people, a change in birth control therapy can help to regulate this to an extent. It is probably worth discussing this with your doctor to see what they might recommend.
It is important to remember that people with lupus are advised to avoid oestrogen-containing birth control methods as these can increase the risk of blood clots and potentially raise disease activity.
I take progesterone only pill, 5mg each day. Since i don't take a brake from it, I don't even get a period which is great in itself. Alternatively you could try progesterone and tiny bit or estrogen, which will makr strogen swings go away (doesn't happen if u are on progesterone only). Just try it and monitor if it works for you. If not stop it. Anything else than very little estrogen is not recommended for lupus, as estrogen usually causes flares. Tiny bit might actually reduce it as it diminishes swings.
Thank you so much everyone. I really appreciate your replies and you have given me lots of pointers for discussion with the GP next week. It would be so wonderful to reduce my flare symptoms at the time of the month. Fingers crossed something will help.
Hi I had the same problem until I got sterilised which reduced the flares asap. I was glad I chose to go that way as I wasn't planning on extending my family. I hope you find what works for you soon. Take care.
It is recognised that autoimmune diseases are affected by female hormones. That is why some people go into remission after the menopause.
I was given bio identical hormones and my condition spiralled out of control. I would think the pill would have the same effect and for a longer period. I couldn’t take contraceptive pills.
Flare ups are a kind word. I've started the menopause journey and it was 5 days of pure hell. I was put on the birth control pill I took for years. It had the lowest dose estrogen available. Loestrin FE 1.5/30. It also has the iron we need. I've done very well with mills flare ups and my moods are more stable. I also take an herbal. Inositol 1000mg caplets, 2 about an hour before bed. You can Google the studies done. It's an excellent natural relaxer, and it also helps us produce a small amount of estrogen. All the info is in the study and I hope it's available where you live. There are no contraindications or any drug interactions to watch for. It's inexpensive, and with the BC pills, my months are much calmer and nowhere near the hell they were.
Its very confusing. My Rheumy has always told me the Lupus is extremely hormone sensitive and to avoid any hormone treatments eg pill, slow release coil, hrt etc like the plague and do not let the Gp prescribe them. He warned me menopause would be a tricky time. I have been up and down with flare ups and mood swings, night sweats and all sorts for about 5yrs but I havent had a period for 11 months now and it all seems to be settling down. Dizzy spells were my worse thing. I did heed his advice and didnt take anything and I think just knowing all the sweats and dizziness etc were hormonal and nothing sinister (I did get checked for Lymphoma) helped me to pretty much not let it rule me. I felt so bad sometimes they genuinely thought I had lymphoma. I went to some relaxation and 'mind over matter' classes and they really helped x
I know I'm 8 months late but this is a very interesting post and I'm so glad that I've stumbled upon it. Reason being, a few months battle with a very strange lupus flare, and despite my bloods being normal, I was informed that my oestrogen levels are overly high despite not being at the perimenopause phase but approaching, at the same time.
Contrastingly, prior to this episode which I'm still currently experiencing but steroids are my temporary saving grace, I have a rare autoimmune progesterone skin involvement disease. My body reacts to it in a very strange way. So, I'm not looking forward to when the perimenopause phase does kick, as indicated above this will have to be utilised. Furthermore, my mother and grandmother started the peri phase late, in their mid to late 50s. I remember distinctively because they always moaned about it. So, don't know what's happening to me as I'm no where near that age, early 40s.
My case is quite novel and complicated that my Rheumatologist and GP are at a loss at the moment. I'm trying herbal remedies (also checked with medical professionals of they were okay to use) and changing my diet until a the new normal kicks in and we're allowed back into the hospitals. The symptoms are awful. I thought I was loosing my mind, at one point.
I've made a note of Paul's post and will ask them, during my next telephone consultation to most probably reach out to him for guidance, perhaps.
Again, thank you for sharing this post and I hope you are more comfortable and your quality of life has returned.
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