Inflammation symptoms during period.

[Sunflowers_2020]

Hi there, I am newly diagnosed with Lupus. Been taking Hydroxychlorquine for 8 months and it has improved the aches on both ankles, joints, mouth ulcers, losing hair. But I feel the aches and stiff ankles comes back during the week my period start. Does anyone have the flare during their period. How long do you take Hydroxychlorquine to be completely inflammation free? If anyone have the same experiences please share and did you need to increase your Hydroxychlorquine medication. I want to be free from inflammation soon for at least 6 months before my IVF egg transfer.

[WinterSwimmer]

I always had fatigue, joint pain and inflammation when I was pre-menstrual and when having my period. That was never controlled by the lupus drugs. I was happy to have the menopause although disappointed that it didn't cure the lupus. Sorry I can't offer something more positive - but you are not alone.

[Sunflowers_2020 in reply to WinterSwimmer]

Hi Winter Swimmer, thank you for your message and good to know I am not the only one having this problem.

[catno1]

I was diagnosed in 2005, now post menopause and 53 but had exactly the same as you. During every period my legs would feel bruised, itchy from the foot to the thigh and this often seemed like it started days before and gradually improved a few days after.

Have a good search round online on the subject of Lupus and periods as there's probably lots more on the subject hopefully. I was lucky and found a brilliant article on Lupus.org which made me feel normal. Our UK site is superb but I have also learned much from the USA's Lupus.org (Lupus Foundation of America)

Keep strong,x

[Sunflowers_2020 in reply to catno1]

Hi Catno1, thank you for your message and recommendation to the Lupus foundation of America. The website is very useful and I have read that it maybe our hormone changes that trigger our inflammation during our period. Did your inflammation ever stopped during your period?

[catno1 in reply to Sunflowers_2020]

Hi,It started a couple of days before blood loss. Haematoma bruising on my thighs throughout blood loss which could be sore and itchy. Probably not helped by having APS (Antiphospholipid Syndrome) as a secondary autoimmune. Both thighs and knees would feel heavy and sore and just days before bleeding stopped I could feel a change and the bruising would start to lighten in colour and be gone within a week. My knees have been a problem since I was sixteen to be honest and were cracking and crunching before I left school. The heavy, sore painful thighs continued until menopause. Bleeding stopped, that was a relief as mine could last as long as 19 days, the APS was blamed for that, and it's only been the last couple of years that I have no doubt my hormone levels have dropped. Weirdly I could feel small changes in me.

We're all different and not sure if many can but I can even feel when I need an INR test. I've self tested for thirteen years and in some ways know my own body too well.

Please try not to be afraid if you have problems. Obviously I mean things like odd swelling, being off food, diahorrea maybe for a day. Always google your problem as you see it and it's surprising how many others have encountered the same. I've had some shocks, waking with acute pancreatitis, chronic migraine, kidney infection and other delights without any warning the previous day and obviously it's been hard work. I still take 200mg of hydroxy a day and need many other drugs due to physical damage of bone and muscle in me, sadly I'm small boned and had arthritis for many years but gradually over the years noticed patterns such as the swelling during periods etc.

Hope I haven't rambled too much there and please, we are all different but do get in touch if you need someone to speak to. On sites like these with many diseases and problems it can be daunting if you feel silly asking about something that concerns you. Sometimes I've felt a bit alone and had a flick through the posts and realised I've been worrying too much and felt better immediately. Sounds daft but true!

You take care,x

[Amakura]

Have you brought this to the attention of your Rheumatologist and Gynae? The reason being, it is very common, and I'm sure they would be able to shed a more accurate light on what you could do to reduce the inflammation during your periods, perhaps?

Practical steps -

I would recommend, in the meantime, logging your cycles (ovulation and menstruation) along with your symptoms. For instance, day 14, ovulation, and any symptoms. A good App to use for this is Flo, which allows you to add notes whenever necessary and automatically sends you alerts when you're ovulating etc. I also use it alongside a spreadsheet that I have created myself (but I'm just over the top like that hahaha). The App would be a great way for you to present your findings in a factual form in order for them to find a suitable solution that would aid in your fertility plans. As in, when they ask the questions, you'll have all the evidence to hand.

Hope it all goes well for you.

[Sunflowers_2020 in reply to Amakura]

Hi Amakura, thank you for message and your advice. I will try and record my ovulation and symptoms. I have told my rheumatologist about it twice and she didn’t say much. Just told me to continue to take medication. I have asked how long this will take before to be inflammation free and what are the success rate for my pregnancy. She just said I need to talk to my IVF consultant. I just feel I am not getting the support and understanding from this doctor.

Thank you and all best.

[Amakura in reply to Sunflowers_2020]

Really sorry to read about your experience. Your Rheumatologist should have some knowledge in relation to how lupus interplays with the menstrual cycle, even if it is minimum and should share this information with you.

Have you asked your IVF consultant to communicate with the Rheumatologist direct with regard to your question instead? Usually medical professionals, when they have to communicate about a patient, are more willing to share the information you require and, from what I've experienced, more willing to take the appropriate action. I would also encourage them to communicate regularly and furthermore, they should be updating eachother throughout the duration of your treatments.

Just an idea and could prove quite fruitful. At least it would alleviate your worries and concerns.

In the meantime, have you searched on the Lupus UK website with regard to Lupus and pregnancy?

[Tiggywoos]

Hi Sunflowers Regarding hydroxy dose (I may be wrong ) I think it’s calculated on your weight so if you’re on the light side you might only ever take a lower dose . I’ve taken it for 6 months now and by 3 months my hair stopped falling out and the rashes were a bit better .

Regarding ovulating and the week before I definitely rash up more and swell facially (ironically it’s was husband who noticed this).

I think Amukara offers great advice so do speak to rheumatologist and gynae . Don’t wish to sound negative but the hydro wasn’t a magic bullet for me but i always think things could be worse without it .

Good luck and take care ❤️

[Sunflowers_2020 in reply to Tiggywoos]

Hi Tiggywoo, thank you for message. I currently take 200mg of Hydroxychloquine. It took a while for the medication to work for me, I say 5 months. Maybe it doesn’t help when I am feeling really stressed about the coronavirus, IVF treatment and then find out I have Lupus. Hope your lupus go in remission .

[Tiggywoos in reply to Sunflowers_2020]

IVF must be so stressful ... I wasn’t brave enough to try so credit to you ❤️. Years of endometriosis had worn me down . Good luck 🤞 and keep positive and I’m sure it will all come good x

[Littlemisssunshine87]

I flare during my period it’s so annoying. Sometimes it’s not too bad but others it is and can last a few weeks rather than just going away when the period stops (so drs can’t just gaslight me saying it’s normal period related symptoms 🙄) I don’t know how to get around it not causing inflammation, I tried the pill etc but that comes with its own host of side effects.

[Sunflowers_2020 in reply to Littlemisssunshine87]

Hi Littlemisssunshine87, thank you for your message. It’s good to know I am not the only one having inflammation during my periods. The pill makes me feel dizzy, stopped after a month. Our hormone changes play a part in our flare up. I guess until I start menopause. Hope your flare up are short one.

[Roanna]

Hello Sunflowers_2020Sorry to hear your unfortunate inflammation during your period. We are all very different indeed. I have no issues during my periods but during ovulation, to the day I get inflamed joints. After a few days it’s gone. I have also tried birth control pills and would spot if I took the kill a half hour late. I tried progesterin IUD and also got inflamed joints till it was removed. So sensitive to it. Hence mid cycle flares.

As when you asked your Rhumy about the issues, I’ve seen 4 different ones and get the same answer. See your GP and get referred to a gynaecologist. One told me he doesn’t specialize in that are so couldn’t help me but did send my GP a letter re my concerns. So in all, good luck. Do avoid Ibuprofen if you can for inflammation, it messes up your bloodwork and is not good for us.🤗

All the best to you.

[Proudmama31]

I also tend to flare during PMS and start of period. I’m not sure why it happens. It’s not every month. Be sure to watch your sugar intake week before period, it’s a big inflammatory. I eat chocolate 🍫 ;(