I’m 34. I’ve had Behçet’s symptoms for a few years now. Things started with my diagnosis of Intermediate Uveitis 10 years ago. I had the genital ulcers 5 years ago and pains in my shoulders and arms and terrible headaches, this is when Behçet’s was first questioned and I was referred to a Rheumatologist, he and my Ophthalmologist decided to just monitor the symptoms and not medicate just yet, as I hadn’t had Intermediate Uveitis flare in sometime and only one flare up of genital ulcers, I had around 5 and they left scarring. I I had another flare up the year after that, it was only the steroid ointment I had from the year before that healed them.
Things got worse with Viral Meningitis in 2014 which I was hospitalised for.
I had “Aceptic” Meningitis last year, that I was also hospitalised for. My specialists put it down to my immune system and again, just to monitor me.
I returned to work a year ago and feeling much better increased my hours back to full time 4 months ago.
My Intermediate Uveitis seems has not returned since the Viral Meningitis and my Ophthalmologist discharged me back in May of this year.
My Rheumatologist who I only see yearly hasn’t properly diagnosed the Behçet’s and is reluctant to medicate with suppressents, unless things all fare up at once and get a lot worse.
Things are fine, and I thought I was over it all, apart from extreme tiredness that I have learnt to live with, but it’s the terrible headaches I’m struggling with. I keep a diary and have noticed they come around the time my period is due and last for the duration. I still have Sumatriptan on prescription after last year, and Naproxen my Rheumatologist prescribed for my muscle pain. Nothing helps these headaches Also I’ve had 2 lots of mouth ulcers come with the headaches over the last 2 months and they only respond to steroid ointment.
Today I am day 5 of the headache, I’ve had to take the day off work which I took as holiday as only just finished my formal notice from when I returned last year, which was to have no sick for 1 year. I really didn’t want to go sick so soon.
I’m not due to see my Rheumatologist until November, but I’m now seeing this pattern that I think it could be related to my period, I’m considering contacting him to perhaps look at prescribing something like a immune suppressant?
Do any females on here experience the same thing around the time of month?
Thanks
Emma x
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EmmieJayne
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I posted this info recently to a bunch of other BD groups, and should have posted it here, too:
BD FLARES AND MENSTRUAL PERIODS
Yes, periods can cause BD flares -- I had that problem for 30+ years until I went through menopause. I'm 62 now and have almost no BD symptoms anymore, which is a huge change from when I was younger (that happens for some of us, but may not be the case for people with major organ involvement and/or neuroBD. Remember, though, all of us are different, and nothing's set in stone when it comes to BD!)
There's a 2017 medical journal article available online for free, called "Exacerbation of Behcet's syndrome and familial Mediterranean fever with menstruation." It mostly talks about BD skin lesions and oral/genital ulcers, and doesn't include neuro symptoms, severe vascular issues, or uveitis/retinal problems.
Here are the most important results of this study, which compares 200 women with BD who are having their periods, with 250 women *without* BD who are having their periods ("Healthy controls"). I'm not going to talk about the women with familial Mediterranean fever who are also in this article.
Anything that shows up in brackets [ ] are my comments, to try to make the info easier to understand. I've removed almost all percentages and p-values from this section, but you can see them in the article (link is at the end).
RESULTS:
"As shown in Table 1, a total of 136 patients (68%) [out of 200 women] with BS reported exacerbation [worsening] of skin-mucosa lesions during menstruation: led by acne, followed by oral ulcers, genital ulcers and erythema nodosum [called "nodular lesions" in Table 1]. Except for acne, which was actually more common among the healthy controls [women without BD], all [oral and genital] lesions were significantly more frequent among the BS patients (Table 1).
"Also the [percentage of Behcet's] patients who reported
headaches was slightly more than the [healthy women]. We analysed whether medical treatment with colchicine, azathioprine and other immunosuppressives had any effect on menstrual flares, but we found there was no difference between those who were receiving medical treatment and those who were not (data not shown).
"Moreover, compared to the healthy controls, BS patients were less likely to have acne lesions on the face, but more likely to have them on the extremities [arms/legs, hands/feet] and on the back and chest. BS patients who reported having acne flares were significantly younger than those without.
"Therefore, we divided patients and [healthy women] into three age groups (17–30, 31–40, 41–50), to assess the age distribution of those with acne flares (Fig. 1). While the frequency of patients with acne flares decreased [a lot] with age in both BS and the healthy controls, the oldest age group of BS patients [age 41-50] tended to have more acne flares during menstruation."
If you want to read the *whole* article, you can see it here:
Go as far over to the right on that page as you can, and you'll see a box with orange letters that says "Article PDF." Click on the box and it'll open the article.
Hi hun ! I am 43 and was diagnosed 3 years ago ! My worst symptom apart from oral ulcers are the debilitating migraines I suffer with and the same as you they occur homonally! They can last for a week of every month! 😢I’m a nurse and struggle to work because of the tiredness and I’m a single mum! I work 3 days a week but anything more I tend to struggle with. I’m on mmf and Humira and have recently started amitryptilline 10 mg for prophylactic treatment of headaches and then when I get them I take the sumatriptan , metoclopramide and Shortec which is opiate based! I just need to lie down and sleep them off though! Sending big hugs xxx
Hi Hun, sorry to hear you are going through the it too. I tired Amitriptilline last year, but didn’t like the groggyness I had with them so didn’t continue with them. The Sumatriptan helped me a lot last year, but doesn’t seem to be with these hormone related headaches. I am the same, I just sleep them off. Big hugs to you too xxx
Hi Emma - everything you have was 100% me - all around a period. Read my posts if you have time. I would recommend going back to your ophthalmologist. I too had uveitis, but I developed a retinal vein occlusion. It was only then I had a Behcets diagnosis even though it had been thought so for 10-15 years prior. I now take immunosuppressants - azathioprine - and this has stopped all symptoms. No ulcers headaches etc. I also avoid anything anti-inflammatory. This includes foods, medication, topical creams etc. I understand you not wanting to go down the meds route - I felt the same, but when it effected my sight the decision was made for me. I have had no side effects with Aza, a bit of a settling in period, but two years on and I have no eye inflammation. I hope you can get sorted with this soon, and get on with the rest of your life x
Hi Sam, thanks for your reply. I have read your post and comments. Very much the same things as I experience. My Ophthalmologist discharged me as my Intermediate Uveitis seems to have gone away for now - but this has happened before and I’ve had flare ups again so I’ll see... I will will speak to my Rheumatologist next time I see him and highlight this period trigger to him, and ask to be put on some immune suppressents - it might seem a bit extreme for a few days / week out of the month, but those days are the worst for me and I can’t live a normal life 🙁 Plus I’m always tired - I work 4 longs days and have Wednesdays and weekends off, all of which I sleep 12 + hours x
Tiredness a killer for me too, but more manageable if you feel well. Your sight is precious though. The flares with a period have ruined holidays et, and I too ran my life around every fourth week. I do hope you can get a solution soon. Keep posting how you get on. All the best. x
If so, with all of your symptoms , and especially after the migraine issues after meningitis, it may be better to see a Behcets specialist than just allow this series of monitoring to continue , like many of us for years, not getting appropriate treatment because you have no definitive diagnosis , will not just cause issues with work but will take a toll on your body to.
Your GP or your dentist can refer you to the Behcets CoE at four hospitals across the U K without cost to their practise, it is centrally funded, they just need to contact the nearest centre filling out an easy form and giving a covering letter stating you have been experiencing all the symptoms that suggest Behcets but need a diagnosis.
You can get the helpline and address and info by checking out the Behcets Society on this site .
You could go to my feed and see my reply to another members questions on periods and flare ups too.
Hope you get the help you need. If you want to ask anymore questions please send back a reply.
Hello, yes I am based in the UK. Thank you for the advice. I will definitely speak to my GP regarding pushing for this referral to see a Behçet’s specialist, I certainly need something more than just monitoring it. Things do seem to be getting worse with the migraines, joint and neck pain too.
I’ll have a read on your page and let you know if I need anything, thank you 😊 x
Just thought I would explain about choosing to go for the referral via GP instead of the Rheumy.
since my referral , I got quite an awful response from my opthalmologist , who took it as a professional slur rather than the real reason that a referral would mean I would get a speedier diagnosis , seeing specialists of each dept. on the same day who then consult together about their diagnosis and any treatments .
Unless you know your consultants well and have a good relationship with them it is probably better going through the GP or Dentist route.
I have had BD mostlikely since childhood but dx in later adulthood. I suffered dearly with migraines and tried every pill out there as well as the over the counter ones in every combination. A)Your body gets used to them after some time and then less effective ; B) very costly if popping them like crazy. I am now on a propylactic medication daily called Topamax(Topiramate) and went from monthy migraines lasting days on end to never having a slight headaches anymore😁 I take 100 mg per day.
As for the ulcerations, Colchicine is what works best to prevent them. In the mouth and otherwise. I take 0.6 mg a day.
It would be nice if your family physician or rheumatologist were on board to help you so that you don't needlessly suffer. Better to be proactive. My suggestion is to print off some info backing up what you are comfortable to try and go to whom you have the best relationship with and plead your case.
Thank you. I am seeing a Rheumatologist tomorrow, not my usual one as it’s a last min appointment due to increased symptoms. I’m taking a print out of all symptoms experienced over the last 7 months which shows more frequent over the last few months. Hoping for a referral to CofE in London.
I’ve had BD for years but in 2017, I developed atypical migraines, they are generally Hemiplegic and migraine with brainstem aura. They are related to my Behçet’s. They are severe while ovulating and during my period. I have to take blood thinners for Pulmonary Emboli. I have decided to do a endometrial ablation, hoping it will help. I take verapimil for my migraines. My migraines cause full body paralysis and stroke like symptoms. Last year this happened every day, verapimil helped. I’d recommend seeing a headache specialist. I see a immunology neurologist, he has specialty in neurological issues stemming from immune related conditions. I also take migrerelief whichever recommended. It’s on amazon. Hope you feel better!
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Also I’ve had 2 lots of mouth ulcers come with the headaches over the last 2 months and they only respond to steroid ointment.
x
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