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Behçet's UK
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Help my 17 year old daughter has numerous vaginal ulcers - an recommendations re best pain management?

Is there anyone in Australia with teenager suffering from behcets? It would be nice to chat to someone in same position. Marilyn

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Hi there

I have had BD since the age of 9 and had the recurrent vaginal ulcers from 13. I am now 39 and a mum of 4. If its the pain of the vaginal ulcers and meds to helpyou can use an asthma inhaler called becotide which is a steroid spray and you can spray it on the ulcers down there. One other thing that has helped me and I have passed onto others is sprinkling bicarbonate of soda in a warm bath and bathing in it. It does help soothe and keep them clean so not to get any infection. It is real hard as a teen to have this disease but I believe I am a better person for having this disease and have made some lovely friends with BD that I would never have come across. I do hope someone her age is around to chat yo as it helps brilliantly that someone knows exactly how you feel. Good luck and sending lots of love to you both x Christine x

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Thank you so much Christine, it's lovely to have received so many replies to my question.....I'm overwhelmed by it! I wish I had found this site earlier as my daughter has been suffering with ulcers since the age of 5 or 6 but they have always been in her mouth and throat. Her first bout in the vaginal area was three years ago and again now. You have given us hope! I'm happy you are leading a normal life, sometimes when the bouts of ulcers are so bad, you can't see the light at the end of the tunnel. My daughter also suffers from Major Depression, it's been very hard for her indeed and again getting a response from you has given us hope. Take care lovely lady x x x

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Hi again

It is very difficult not get depressed with this disease but I can say I have had good and bad times. Behcets did end my marriage of 16 years as he was just fed up of being the carer. Ironically he left when I started infliximB which gave me a good 3 years of a relatively normal life that was back in 2004. I am now awaiting some new treatment to start and hopefully get some normality back in my life. It is tough but with fight and determination you can try to have some life.

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Hello Marilyn, yes we do have some members here from Australia, I'm sure they will make themselves known when they see your post.

I'm sorry to hear about your daughter. There are a few chats on the forum about ulcers and if you type key words into the search box on the top right you will find them - you might find some useful tips there.

Here is an example of one: behcetsuk.healthunlocked.co...

There are support groups for youths and also for parents which you might find useful. I will pm you some details later.

A tip for future posts, if you had put your question about Australia in the title, it is more likely to come to the attention of those people. You could ask the ulcer question separately so that you are sure to get responses to all that you ask. I'm sure you will get responses anyway, but it's a good way of getting the best out of the forum. :)

Best wishes

Tig

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Thank you Tig

I have clicked on the example link you have posted and my daughter is sitting in a bath with bicarb soda as I type!

I did set up my account on my iphone which i found hard to read lol.

Again thanks

Marilyn

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Hi Marilyn: as the driven chemical substances in the treatment of Behcet's disease

View drug received approval from the FDA as a drug Ampremilast are expressed. If we look at our country, this is the first time ifadelerene kullanlarin specified drug should be used continuously. My suggestion to you about Behcet 's disease. Let's be a little more patient, we hope you will experience happiness soon. to discuss

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Hi Sunset, i'm not quite sure about your reply in that is the drug called Ampremilast? or ifadelerene kullanlarin? or are they different? In any case I will google. I'm in Australia, are you in UK or Australia?

Marilyn

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marilyn hello;

Ampremilast Switzerland and the United States, in cooperation with the drug's Phase 1, Phase 2 and Phase 3 studies was completed guess. Anchor Prof.Dr.Abdullah GÜL patient group in Turkey implemented in medical school. Colchicum expression of people who use drugs are more effective than chemical that was.

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There is a hierarchy of drugs, from mild anti-inflammatories up to serious immune suppressants used for organ transplants as well as other experimental drugs. The side effects of most of these drugs can be serious in themselves.

I would recommend if behcet is suspected to get a referral to an immunologist who can do full evaluation and proper diagnosis and work out a treatment regime starting with the mildest appropriate options. A cure for Behcet is a long way away and will probably require DNA splicing.

Apremilast looks interesting, I don't think its available in Australia yet though.

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Hi Mazmerelda,

You will find a lot of good info from people on here re treating ulcers and generally dealing with having this condition. As for young people to talk to who are experiencing this, there are some on the facebook groups "Behcets" (closed group) and "Behcets Syndrome Society" (open group). Also some parents on those groups.

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Thank you i will look on Facebook.

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I have prescription from GP for Betamethasone ointment, or if that doesn't work Elidel (pimecrolimus) cream most likely will. Either can take days to kickstart healing.

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Thank you for your suggestions, i will investigate and inform our doctor and see which is appropriate for my daughter.

Marilyn

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Another one you can try is kenacomb ointment, again needs a prescription, not as strong as betamethasone, but has added antibiotic and anti-fungal to protect the ulcers.

I should add that Elidel needs to be gently rubbed in, it has poor absorption, study I found shows that it works in about 80% of case for GUs. Elidel is a topical immunosuppressant.

When using Elidel, I alternate it with kenacomb, because I think there is scant immune action left to protect the ulcer.

Some ulcers respond to sigmacort (hydrocortisone) which is a mild entry level corticosteroid anti-inflammatory. Different locations seem to respond differently, experimentation is the only way to work out what works where and when. Catching them early is also good.

In order of strength: sigmacort, kenacomb, betamethasone and elidel.

You should get proper diagnosis, prednisone or stronger might be called for to stop a flare up.

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Thanks the order of strength makes things clearer.

Marilyn

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ok. I did find in my behcet book some ideas. Vagisil, Baby Orajel with a covering of vaseline on ulcer prior to urinating. various lidocaines. (instalgel, ELA_MAX, EMLA cream, etc) Blue gel tattoo anesthetic.

I have no experience with any of these. Blue gel seems most likely to be useful, but you have to order it from the US.

If it is behcet, the best thing is to find what will stand down the immune system so healing can start.

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Hi Marilyn ,

I am one of the Australian group, but am 54 so not a great deal of help to your daughter. I wough look at some of the Internet sites suggested by others.

Also checking with your gp that there isn't any fungal component .

Let me know where you are in Australia.

Felicity

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Hi Felicity, we live in Adelaide, where in Australia do you live? In regards to the fungal component, what exactly do you mean by this? She had a swab taken but do i need to ask specifically regarding the fungal component?

Marilyn

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Hi,

I live in Sydney and was diagnosed in feb 2009. I had presented to the dr in dec 2008 and then we were overseas on long service leave.so really I was diagnosed straight away.

I am not a dr but they always seem to do swabs for fungal things but it sounds as though that has been done.

Welcome to the site, there is great support and knowledge.

Felicity

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GU flare ups can be preceded or caused by thrush or other fungal infection, or they can look exactly like thrush without any actual thrush being present.

Hence the swab in case your daughter's problem is just a fungal or other type of infection.

In Behcet, the immune system will attack little veins and capillaries and certain tissues, as though they were fungal, bacterial or viral infections or a mix of any of these, even though there maybe be no underlying cause. Generally diagnosed by a process of elimination of all underlying causes and a history of issues in the main three areas, mouth, genitals and eyes.

It's now believed that Behcet and other autoimmune syndromes are the result of intermixing neanderthal dna with human dna, with the neanderthal immune component not recognising some human cells as internal rather than an invading threat. Hence the immune system will attack normal cells in some circumstances and can look just like an infection or can cause an ulcer, without any actual infection or other obvious cause.

I have found stress, physical or emotional or sickness are triggers and can kickstart my immune system to go into attack mode.

hope that helps. :)

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Hi Marilyn,

Sorry to hear about your daughter!

I've only recently been diagnosed with Behcets so I'm steal getting used to it, but I'm 20 years old and I live in Brisbane!

The vaginal ulcers are the worst part for me so far, but I haven't had anymore since I found out I had Behcets 2 months ago.. I'm still learning!

Take care,

Mel :)

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Hi melcrane

I live in Brisbane and have been told I have behcets (or sometimes they say probable behcets). I am struggling with this illness and wondering if you have any information on the doctor/specialist you see or support groups in the Brisbane area?

Thanks

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Hi Mel, my daughter is turning 18 very soon and we live in Adelaide. My daughter had her first bout of ulcers in the vaginal area 3 years ago, since then she has been clear of them (except for mouth ulcers) up until now. I do think severe stress brings them on. Do you agree? I'm surprised to hear that you were diagnosed straight away? It has taken many many years for my daughter to be diagnosed. Previously she was being treated as a Crohns patient and it was my persistence in telling them she didn't look or have same symptoms as the children suffering from crohns that made them investigate further. Private message me if you like otherwise i wish you well, I really feel for you.

Marilyn

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Hi,

I used to live in Adelaide! :)

I have had the vaginal ulcers two times before my last bout, one 2 years ago and then the 2nd one 9 months ago and then third one 2 months ago.. Plus mouth ulcer 24/7. I have some awesome natural peppermint oil for my mouth ulcer tho that helps me bear the pain and they go away heaps quicker too! :)

Yes, stress definatly can cause it! My second lot of vaginal ulcers came 2 months before my wedding which I was planning and I was pretty stressed at the time over a few things!

All the best

Mel :)

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Hi Marilyn

I'm also in Australia and from Canberra.

I hope that your daughter finds some relief from her ulcers and a treatment that works. Its so tough for teenagers who are dealing with puberty let alone having to deal with BD as well - my thoughts go out to her. Body image is so important to them during these years.

You'll find everyone in this group very helpful and supportive and I can't sing their praises enough since I joined about six months ago. A warm welcome to you and your daughter.

I wish she could be painfree!

Cheers and good luck

Vicki

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Thanks Vicki I'm overwhelmed at how many replies I have received. It's so nice to feel part of a group that really understand - finally!

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Hi Marilyn,

I'm near Melbourne, Australia.

So sorry to hear about the pain your daughter is going through. You are finally going to get some of the best recommendations for BD.

My daughter has just turned 11 and was diagnosed a year ago. I won't go into it all, as its on previous postings. The ulcers down below are horrible but they have been constant for about 3 years. The amount of symptoms went crazy, the specialist started Jaida on Infliximab about 3 months ago. Now after 4 treatments, for the past 3 weeks Jaida has improved out of sight even playing a half of netball. We have finally got our daughter back, happy and healthy. Jaida is still on different meds but we have been reducing the steroid from 25mg to 5mg and hopefully in a week 0. I just can't believe it.

I've put the happy ending on here to hopefully give you the light at the end of the tunnel story. Well, I may be jumping the gun but I feel on top of the moon. Not to mention sleeping better at night. When I first started to read about people's personal experience living with BD, I can tell you some of it scared me to death but the info is all honest. It is a disease after all. When I read about Infliximab 74 positive experience it made it a little easier for me to try it out on Jaida.

The popular tags on the right side is so interesting but if you have any further questions, fire away. I didn't try the above ideas but the spray was what I was going to try next. Good luck.

Michelle

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Hi Michelle thanks for your response. It's nice to hear positive outcomes. My daughter is yet to see a rheumatologist as the children's hospital here in Adelaide suggest an adult service now that she is turning 18. My daughter has lived with behcets for 12 years now but we only found out it was bechets after her first bout of vaginal ulcers 4 years ago, previous to this it was mouth, throat and bowel ulcers. Since the vaginal ulcer she has been maintained with colchicine (used for gout) but she refused to take any meds for the past 2 years so hence another bout. I'm telling you this as it might give you further hope that things can settle if on the right medication. I wish you and your daughter all the best and for you many more restful sleeps!! I know exactly how you feel.

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I have had vaginal problems. Not so much ulcers, more like large pea-like lumps that pop up around the outer labia and get in the way of folds, or just inside the inner labia and so are painful when the two sides touch and then the lumps might go septic and then burst, so end up being open small ulcers anyway. I won't talk about treatment for the Behcets, as that deals with the source but not the symptom so much, but this is what I do to keep a little more comfortable.

The one thing I found for the awful chafing and stinging is that it is so much better if you can keep the bits lubricated, especially where folds or sides touch. I learned this from my vet though, after my dog got an ulcerated vagina.

We both use Sudocrem as it provides a very good, but sticky, oily, barrier and is antiseptic and designed for nappy rash in babies.

Or another one is Drapolene for nappy rash which is much more water based and less sticky, but does not last as long.

Occasionally I have used a steroid based cream too but to be honest, if it really is sore and you need to go to the loo more than the 3 times per day the steroid cream is prescribed, then you are most likely going to want to apply something more regularly than just 3 times so another milder cream is useful.

Every time i go to the loo, I rinse off if I can with cotton pad and lukewarm water. I change my pants frequently as well and make sure the pants are really soft in the gusset area. It is probably best to make sure that pants are not washed in really strong bio detergents, or in fabric softeners. These leave residues behind and while that might be ok on closed skin, if there are open areas the bio chemicals are designed to digest stains and so can digest skin too. The fabric softeners have lanolin, but also lots of perfumes and can sting on open sores if it touches. I would wash your daughters underwear separately with non bio, and rinse in plain cold water to make sure there is nothing that can irritate.

If it is almost healing and I don't want it too sticky, but don't want each step to feel like my bits are chafing I have used plain KY gel to keep it lubricated and smooth, and it really does reduce some of the pain from it externally.

I have also found that it is particularly uncomfortable at period time and I cannot wear tampons. Sometimes, even my own blood can sting so I shower it off a lot. Some of the modern type sanitary towels have anti-odour agents and other chemicals built in to the pads, and that can be really stingy and irritating to the area if in flare up. A lot of the pads have been bleached and treated to get white so are full of so much more than just cotton wool or paper. And the modern towels are thinner but more rough and synthetic so I look for the Kotex pads which are really soft with cotton like surface and thick pads to give cushioning too.

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Thank you Erssie for your very detailed response. I will certainly inform my daughter of some of your tips. They all make sense and only tonight did I buy my daughter some cotton lined pads as I think the chemicals in pads irritate her too. Again thanks so much

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I have a feeling that because I am incontinent and wear panty liners as a sort of insurance, that sometimes my sores are actually started by the pads.

Trouble is that the pad is soft when flat, but if you wear trousers, or like me have chunky thighs, the pad and gusset gets squashed into ridges and they can rub and sting. Wearing no pants at all, and lounging around getting the air down there straight after a shower is good. Any bits that are sore or bleeding will dry into a tough scab in the air, if it is allowed to dry out.

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Ladies, don't forget that this post is viewable by anyone, not just members of this group.

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Thanks for reminding me. Luckily I have an 'open' policy when it comes to medical stuff regarding my more intimate bits and function though, I think not talking about certain things in public means people who have problems find it really difficult to talk about it, unless I have mentioned it first!.

I have the same problem when it comes to having shortened arms and being able to wipe after the toilet, those who were born like that and brought up like it adapt to it and never have a need to discuss it as it is a private thing. People like me that developed a disability of an intimate nature are always dying to ask the more experienced, but find a blank wall. Even nurses tend to talk in euphemisms when it comes to private issues.

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I wasn't referring specifically to you erssie, rather to those who are new to the site and who may not realise that their posts and responses to them are public and that they have an option to make them viewable only to members if they wish.

There could be cases for example, where a parent posts intimate details about a child, the child's peers read the post and know things that the child would rather they didn't.

Having been a victim of internet stalking I try to remember to carefully consider what I say and who can see it.

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Yes, I do realise that it wasn't just for me.....but I had written quite private stuff of mine before, and have done that knowingly :)

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Hi Marilyn

I am sending lots of hugs to you and your family. I used to use Instigel which was a numbing gel that is used by medical professionals when fitting catheters to people to make it less uncomfortable. I was given this by the Rheumatologist that was looking after me. It made a big difference and I found that pouring luke warm water out of a jug when urinating used to dilute the urine to make it sting less. Fingers crossed you find something to help her.

Hugs

Angela

xx

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Does the gel use aspirin or anything similar to the gels for mouth ulcers?

I was almost addicted to using Bongela at one point as a short term relief for mouth ulcers, then was advised by my immunologist that I was perpetuating the problem as the ingredients like aspirin, could be eating away and exacerbating ulcers.

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I dont think it has any pain relief in it, it is just a numbing agent. It was given to me by a specialist Doctor who works in a hospital in Bath called the Royal National Hospital for Rheumatic Diseases and they have people from all over the country have rehab stays and specialise in all things like BD. I trust them implicitly but then again BD is an odd one so who knows!!

Hugs

Angela

xx

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Thank you Angela x

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Hi Mazmerelda

Just want to say hi and that I am from Dapto near Wollongong. Have suffered greatly from GU in the past but they have been under control for the past three years. I can't wear panty liners and only use cotton undies.

Also, personally I make all my comments closed to the community as the threads can go off on some interesting tangents - as Tigerfeet mentioned - that way you aren't worried what the the World Wide Web is reading - just us (mind you this is just personal opinion)

Cheers Lesley

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My 14 year old has had terrible pain from vaginal ulcers. She uses a steroid cream which seems to keep the size and number of the ulcers to a minimum. There is a gel she can use too which numbs the skin so that she can urinate with less pain. Her first ulcers started 3 weeks after the 3rd HPV vaccine - I have a gut feeling there may be a link.

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hiya i suffer to the the uncler down stairs i find bathing in salt warm water help em a lot

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Instillagel, a novocaine gel used for the insertion of catheters is what you need, it comes in a syringe which you just squidge whereever you need to; it was my best friend in the whole wide world a few months ago!!

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Hi,

I am new too this but i could really do with some help. Early this week i started to feel really ran down and i have had a high temperature but have been clueless to what was wrong. Anyway on thrusday night i discover a very large blistered lump on my down below area which i have thought to be an abscess. I started to take antibiotics to hopefully get rid of the believed abscess yesterday but so far no changes. I also noticed today im having difficulty weeing and im in screaming pain. So when i looked i discovered a ulcer has formed?? I have been really ran down and i am in hope it is that however i really dont know?? Does anyone know what i could have?? How to get rid of it? Im in serious crying pain. I mean i am only 17 and im in tears.

Thankyou x

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Hi,

I am new too this but i could really do with some help. Early this week i started to feel really ran down and i have had a high temperature but have been clueless to what was wrong. Anyway on thrusday night i discover a very large blistered lump on my down below area which i have thought to be an abscess. I started to take antibiotics to hopefully get rid of the believed abscess yesterday but so far no changes. I also noticed today im having difficulty weeing and im in screaming pain. So when i looked i discovered a ulcer has formed?? I have been really ran down and i am in hope it is that however i really dont know?? Does anyone know what i could have?? How to get rid of it? Im in serious crying pain. I mean i am only 17 and im in tears.

Thankyou x

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I'm so sorry to hear she is suffering... Prescription Clobetasol Propionate topical steroid is a life saver for me, as if I use this as I sense a problem it halts it for me. Good Luck to your daughter!

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Good day to you and your daughter. I know how hard it is to see your loved ones in pain.I am 40 and have been suffering beahcets from young girl, my 2 older daughter are having some of the same problems but as not had any answer yet.I have ulcers down below and my oldest daughter gets them in her mouth and very bad boiils on her face .all 3 of us have lots a lot of are hair. Mine started coming out when I was 23 a long time ago now /my 17 year old started when she was 14 bless her. And now my 20 year old girl as just started lossing hers.I know it's not as bad as everything else we get/but my oldest daughte is taking it bad.me and my 17 old girl have very thin hair now and it looks like the same for my older girl.it as knocked there confident bad.just would like to know if your daughter as had anything like this..I will be trying the bicarbonate soda.bestwishs to you both, xx

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