Behcets and Hormones

[sam0511]

Anyone find that symptoms are worse around the time of a period? There has definitely been a pattern for me - the worse at the moment is extreme tiredness. That combined with a frozen shoulder, which could be Behcets related but no-one sure. The pain is awful. Any tips regarding managing it, or is resistance futile, and I should just sleep? Also has anyone found that symptoms get less after the menopause? Sorry gentlemen but this one is probably for the ladies to answer. Thanks in advance.

[bballfrisbeemom]

Hi, sam0511, my daughter is 16 now, but had her first flare when she was 10. It was awful, vaginal ulcers maybe 15 ulcers at once that first time. We had no idea what was going on and when my husband took her to the doctor to try and get some help - they questioned him up and down and took him out of the room and questioned her as well thinking that she was being sexually abused b/c my husband gets cold sores. It was scary for both of them, but I'm thankful that the medical community is watching out for children.

Thankfully the test for herpes that they ran on her that day came back negative. She's never had a definitive BD diagnosis after seeing a Pediatric Rheumatologist because they said she only had 2 out of 3 symptoms at the time, but I still think she has it b/c of all of the other symptoms that come along with it now that she's gotten older (horrid canker sores, sore joints, flu-like symptoms, rashes and vaginal ulcers) are definitely in line with BD symptoms.

Anyway- my point is that when she does have flares, which happens anywhere from 5-8x's a year - it's usually a week or two before her cycle. I often wonder if the flare is somehow triggered by hormonal fluctuations, amongst other things (stress, food sensitivities, etc.)

[sam0511 in reply to bballfrisbeemom]

Thanks for your reply - I am certain that flares are linked to hormonal changes - I had 10 years of migraine every month, just before a period. The one thing I did find out - purely by chance - was I would take anti-inflammatory's for the headaches etc. I stopped taking anything anti-inflammatory and the genital ulcers disappeared. After I got kicked by my horse - god love him he died two years ago - I applied arnica cream to the bruise which is a natural anti-inflammatory and I had the worst genital ulcers ever. Try cutting out foods meds etc with anti-inflammatory properties and see if there is a difference. I take 150mg Azathioprine daily and all ulcers have gone - occasional one in my mouth that's it. I feel for your husband, but yes on the plus side it shows that the community is looking out for our children. Keep in touch, I feel for your daughter being so young.

[2106]

When I was in my teens a few days before my periods the pain was excruciating and I would have to go to bed for 2 days every month. My periods were always heavy, I would not be regular either. When I had my first child at 25 this pain stopped. Also I started missing periods only once of twice nobody seemed to worry much at the time. By the time I had my fourth child at the age of 37 my periods had nearly stopped. I then went for 3 years maybe having 2 periods a year. By 40 they had stopped altogether had one bleed which was checked but basically went through the menopause. My symptoms are considerably less but I only eat organic food we grow lots of our own and produce meat have chickens. I only use organic natural toothpaste which has nearly stopped my ulcers totally may get a couple a year from having 25/30 any one time. Also have only scaring from my vaginal ulcers now which I have to be careful with. I am now 56 and I know the things I can’t eat which cause me problems and so I don’t eat them. I also take a flax/linseed oil for my inflammation which helps. Hope this helps xx

[sam0511 in reply to 2106]

That's helps a lot. Thanks for the reply.x

[JollyHS]

Hi sam0511, I am pretty sure my Behcets was triggered by my hormones combined with a massive amount of stress about 9 years ago. I had been taking contraceptive injections for about 10 years and decided to come off it. that if I remember rightly is when the trouble began. Over the last 8 years my symptoms have varied, and it was only 2 or 3 years ago that i had enough at the same time for a provisional diagnosis. On my second trip to the CofE in London I asked if the hormones could have been a trigger and the consultant said she thought it was highly likely and had experienced this patern with other women. The interesting bit about your post for me was the frozen shoulder, I had one about 4 years ago, it is horribly painful, I stuggled to sleep for months and months, so if you can sleep make the most of it. I went to a shoulder specialist and was told that there were things that could be done but that there was absolutley no certainty that they would help, injections and surgery. Eventaully I decided after about 6-7 months to have a steroid injection, this did seem to help help but I'm not sure how much and it could just have been the timiing, I may have been coming out of the most painful stage then anyway. One thing I will say is, when it starts to unfreeze, even though it will be no fun make sure you get some good exercises from a physio, I still do not have full movement in that shoulder. Keep an eye on the other one too, it's possible that at some point this one will go as well. I get similar twinges in my good shoulder so I'm always wondering if that one will follow suite. Lastly. about 2 years ago I decided to have a coil fitted to see if that would help, my genital ulcers subsided as my period lessened. I am now on anti inflammatories as well and life is better, I seem to have more energy and the headaches that were always horrible have calmed down as well. A word of caution though, I have read here of some getting worse while on a contraceptive so what works for one may not for another, I'm not quite at the menopause yet (47) but the consultant did say she had experienced that symptoms can disappear or lessen in women over time. Good luck. x PS lots seem to have food triggers so it's worth monitoring your diet but for me it seems to be stress, hormones and over exertion.

[sam0511 in reply to JollyHS]

You have hit the nail on the head - stress is a trigger for me. I see a physio every two weeks now and he has given me exercises which I do - but interestingly it seems to get worse before a period. I too had steroid injections - two up to now and they do help. It is interesting that you take anti-inflammatory's - for me they are the devil and I avoid. Glad they work for you. I thought I had gone through the menopause, I had no periods for a year but I now put that down to the large dose of steroids I had had to take whilst I started Azathioprine. I lost useful sight in one eye - that was when I finally got a Behcets diagnosis. Thanks for the reply. x

[2106]

Forgot to say. I went onto the pill at 18 for my period made things worse so came of it and found alternative protection. Also had problems with my shoulder had a course of acupuncture which sorted it out. I always found if I put any toxins into my body my symptoms get a lot worse

[2106]

Forgot to say. I went onto the pill at 18 for my period made things worse so came of it and found alternative protection. Also had problems with my shoulder had a course of acupuncture which sorted it out. I always found if I put any toxins into my body my symptoms get a lot worse

[lalamilw]

Yesssss! Before I was diagnosed with BD, I always knew whatever I had that was giving me so many weird symptoms was related to hormones, circulation, and food sensitivities. No doctor has really ever been able to definitively connect hormone problems or treat that issue, so if anyone has a suggestion, I'm listening!

I started my constant canker sores at puberty and started getting the genital ulcers, folliculitis, and arthritis pain in my 30's, when I was finally diagnosed. I've always had heavy, non-regular periods and had strong reactions to the pill and Nuvaring that had me passing out and feeling horrible. I'm on Mirena now, but still get the horrible headaches/nausea at the start of my period and often the end. I think any change in hormones may be the issue and that exacerbates any Behcet's symptoms I have. In the last year, I've also had 3 blistery chicken-pox total-body rashes that are new to me and unexplained by the many doctors I've seen. The only other new symptoms I've documented is a high estrogen level that was tested by a naturopath- which is odd as I'm 47 and was tested bc I was wondering if I was low on estrogen/perimenopausal, which would be more typical for my age.

Anyway, If anyone knows about helping the hormone issues and Behcet's symptoms, I'd love to hear about it. I've been trying for years to find any solutions or medical connections. With so many wacky doctors, diets, and extreme proclamations in the naturopath world, I'm overwhelmed with what to believe or try. And the regular medical world has no solutions for hormone issues or food sensitivities. My sympathies to everyone's pain here who has replied, and I'm glad to hear we have some similarities so maybe we can get a little closer to finding better treatment.

Best of luck to all!

[nanajana]

Two of my worst flares seemed to be hormone related. When I hit puberty, I suddenly developed joint pains so bad I couldn't wash my own hair or walk up a stair. This lasted for several years. Then, when I went through menopause at age 41 I had severe cognitive issues. I had my first symptoms before age 5 and didn't get diagnosed until age 57 after I had been bed-ridden for 1 1/2 years. I am doing better now, due in large part to Remicade. Hope your journey becomes easier. I have heard of that happening as people age.

[sam0511 in reply to nanajana]

I have been told by consultant that it can burn out with age. Here's hoping. Thanks to all who replied to my post, this group has kept me sane throughout the last 2 years since I finally got a diagnosis. I feel that the wider world should know more about Behcets - I have felt very isolated in this throughout, and whilst I wouldn't wish to have a more widely known illness, the blank stares and glazed expressions when you are asked and tried to explain hurt if honest. Love to you all x

[sarahlgregs]

Hi Sam, thanks for posting and yes I have found my symptoms definitely flare around my period too. I feel like my immunity drops and my body goes into flu like state with sore throat, fever, mouth and genital ulcers. The only thing that seems to help me is eating ice lollies, paracetamol to keep fever down and difflam wash and lidocaine for genital sores and lots of sleep which is very hard sometimes with a hyperactive toddler. I tried prednisolone a while back but it didn't agree with me.

I've also in the last 5 years suffered 5 miscarriages and am currently trying to find out if there is any link to my behcets. I'm forty years old and would love a sibling for my son.

Lastly im also wondering if alcohol is a trigger on top of the obvious stress. Husband and i have been under a lot of pressure with all the miscarriages and he has health concerns too.

Would really appreciate any advice or insight into managing this. You mentioned Azaphioprine?

Thank you.

[sam0511]

Stress is the trigger - without doubt and it sounds like you have more than your fair share. That could also be why you can't conceive as stress plays a part in this too. Your first paragraph described me exactly - flu like symptoms which would put me in bed for at least 3 days - the temperature I couldn't control - hospitalized twice with suspect meningitis, which is inflammation around the brain, and a seizure. All happened before a period. The second I "started" it was like flicking a switch - back to normal. Prednisolone didn't really touch it. I was prescribed Azathioprine after eye involvement and it has stopped all symptoms. I still get tired - just don't feel 100% is the best way to describe it and it is usually before I start a period. I just hope - and I can only base this on my experience - is that when I do go through the menopause the Bechets may recede enough for me to come off any medication. You are exactly the age I was when symptoms started to ramp up so it would be great if you could get all this stopped as soon as possible. You will have to be led by a consultant prescribing this - a rheumatologist - so I would ask to be referred if you haven't been already. If you can get things under control the rest may hopefully follow. I hope I don't come across as a know it all - we are all different and I am only expert in me, but if I had found this forum before I may have found solutions years ago. Good luck - keep posting x

[sarahlgregs in reply to sam0511]

Thanks Sam. No, not a know it all at all. I wish! It’s just such a relief to talk to someone who has had similar symptoms. I’ve felt so down with it and very difficult to talk about with colleagues, friends etc.

I’m under consultation at behcets centre in London and have been told about keeping a strict diet of three veg and protein etc but then I get complacent and eat junk and drink wine and as soon as I overdo it, it’s back. Definitely seems more prominent in winter months too. I have to listen to my body and say no which is hard as I used to love to party and I feel like my friends now think I’m a crap friend or a hypochondriac for cancelling all the time.

Will ask about rheumatologist next appointment. Did u use those purple pills (permitabs) for the mouth ulcers? I wasn’t persistent so can’t say whether they work. I always tend to get ulcers on back of thrust first and not found any pain relief really apart from strepsils etc. As for the other dilemma downstairs, lidocaine and pouring warm water down there whilst peeing helps. My first outbreaks had me screaming in torture each pee. The first few episodes were the most horrific and symptoms haven’t been as bad since, thinking back I should have been hospitalised as I was fainting and unable to function. Thankfully my twin sister came to the rescue. You do not want to be alone when experiencing a bad episode.

If you have found any natural remedies that have helped clear up the ulcers please share again. I’ve been reading with interest but still overwhelmed with all the different advice.

Thank you.

[sam0511 in reply to sarahlgregs]

Dietary wise cut out anything anti-inflammatory - pineapple is one. Stop taking any meds/topical creams etc that contain anti-inflammatories. It can't be coincidence that after I did this I have rarely had any genital ulcers - ditto in the mouth. This was before I started taking Azathioprine. I know that the topical creams with anti-inflammatories effect me because my beloved horse - now diseased but not because of this kicked me, and I applied arnica cream. I had the worse genital ulcer in the memory of man. So bad I could only pee in a bath of water. It can't do any harm to try it. I found after I started Azathioprine I now have lactose intolerance :/ whether it was the meds or just coincidence I don't know. Eat a balanced diet of whatever you fancy. All in moderation. I still have the odd glass of wine but I can't do that to excess as it makes me sick - again I think its the meds. I hope this helps - keep us informed of how it goes - a month of trying it should do the trick. Read all meds labels carefully - certainly no ibuprofen. If you are under the C of E in London, you can't get much better than that, although my "team" in Derby are incredible. Good luck. x

[sam0511 in reply to sarahlgregs]

Forgot to say - the only thing I found that worked for mouth ulcers was a steroid cream - which they have now stopped producing :/ so if I do get the odd one I dab on Iglu. foe genital ulcers the only relief I used to find was sudo-creme but neither will heal, just ease the pain. I found I just had to let them run their course, but again, as soon as I started a period they were instantly less painful.

[sarahlgregs in reply to sam0511]

Thanks so much for replies. I will try sudocreme and iglu. I didn’t know that about pineapple. Thanks for tips. Everything is worth a go. So sorry about your eye. You’ve inspired me to try and get control over this and eat more healthily etc. Like you, I can often get ill after exercise too so thinking gentle exercise to build up to my running again. Thank you. Hope to stay in touch xx