(clinically)Diagnosed today after 2 years of suffering and wondered whats next

[mark3D]

Hi all

Just Been diagnosed today and wanted to know what I'm in for as far a treatment goes.

Fed up with being a tramadol zombie, anyone got any tips for pain relief from ulcers

[Hidden]

Hi,

Being fairly newly diagnosed myself (Just over a year ago) I know what a daughnting and quite frightening place you must be in. Part of me was relieved that I had finally got a diagnosis and a name to what has been causing me horrid symptoms for many years and the other part part felt terrified and vunerable.

Good news is that you have found this site and that with the right medication things should be on the up for you. I'm not going to say it is going to be easy as it might take a while to find the right combination of meds that suit you. A year down the line and after a flare that put me in hospital back in March, I am just starting to feel the benefits of the meds I am now on.

Don't want to freak you out so won't go into detail about meds.

I'm not the best person at listening to my body as my head tends to rule the roost, but I have learnt to take each day at a time, make the most of good days and not to dwell on bad days.

Don't get me wrong but there have been times that I have felt like I wanted to be in a padded cell and totally let rip as frustration gets the better of me.

If you have got a good consultant and a good relationship with your G.P then you are on the right track.

There are lots of great people on here all with varying degrees of BD, but one thing is for sure and that is we can all understand how you must be feeling right now.

Good luck with meds.

Hugs

C x x

[mark3D in reply to Hidden]

Thanks

Glad i have found the cause, now to deal with the treatment

[Hidden]

Hi,

For ulcers you might find this useful:

behcets.org.uk/wp-content/u...

and if you type ulcers into the top right search box you will see lots of conversations members have had about them, with lots of tips.

We can't tell you what you are in for as far as treatment goes - it depends on your symptoms, severity, frequency etc - and it will be up to professional medics to advise you about that.

There is some information about treatment here:

behcets.org.uk/wp-content/u...

Your treatment path will depend on who diagnosed you and what has been recommended as your next step.

Do tell us a bit more about yourself (if you wish) we are a friendly lot and like to get to know each other and share our tips, ups and downs. rants and raves and silly sense of humour. Not that I'm one of those (ahem).

[Hidden]

Mark, I just posted this in another thread but it may be useful to you so I've copied and pasted:

"somewhere recently a mens group was mentioned, but I can't find it at the moment. Not that you are obliged to join it, but it may be of interest to you.

Perhaps someone will remember, or I will find it again myself. It just might be worth checking out for you, but that doesn't mean you are allowed to leave us ladies! Or the few men who we do have here. I don't think we have scared any of them off yet and we are very pleased to have them here."

[mark3D]

oh is this a female group?

[xandii in reply to mark3D]

No! not at all an exclusive female group by any means hun

We have a few guys that write on here regularly but for some reason ( unknown to all of us) the ratio seems to be higher for the girls, not that it makes any difference to the treatments and symptoms anyway.

Hope you are not deterred by that hun, it is great to talk to everyone, guys and girls alike !!

Nice to say Hi to you anyway !! xx

[mark3D in reply to xandii]

Its good to share experiences with real people who have the same issues

[Hidden in reply to mark3D]

Nooooooooooooooooo! So sorry I gave that impression. What I meant was, you may be interested to know that there is a mens group (on facebook I think) because you may feel more comfortable posting there with some issues, sometimes

BUT, as the others said, we do have men here. We are very very glad to have them as it gives us insight into what BD is like for a man and a different perspective and opinion on things.

So please keep posting. It's not just about symptoms and treatments, we post funny stuff, anecdotes, news - whatever we want to share.

Oh, and if you want to make your posts here viewable only to the group, rather than to anyone on the world wide web, you can select that option before you post. x Tig

[mark3D in reply to Hidden]

thanks for the advice

[behcetshurtsbeyondwords]

Hello Mark,

I'm so sorry you have to be burdened with this disease also! As far as I know, this group isn't just for women, I think there are a couple of men who post on here.

As far as pain relief goes, the only thing that helps me tolerate the pain a bit better is strong narcotic pain medicine. I take Hyrdromorpone regularly and breakthrough also, because otherwise the pain gets so out of control that all I can do is lay in bed shaking and crying. I was landing in the emergency room far too often for pain relief, so my GP decided it was time for pain management. I am fairly lucky that he offered to help me with that himself, rather than sending me to a pain clinic, because I'm kind of scared of those places-- I have met lots of people in the hospital and at my infusion clinic that attend pain clinics and they are on so much heavy stuff all at the same time. My fear is that I would be "high" all the time, and I don't want that for myself or for my family to have to deal with-- I want to feel normal, comfortable without having piercing jabbing pain all over; but I also want to be alert and able to carry on and function normally. It took me a long time to find the right med for me as I don't tolerate many of the stronger narcotics, and am also unable to take Morphine. But once I found the right med, the right dose and right schedule, it was well worth it. I don't like having to take a narcotic medicine, but its also not fair that I have to live with such severe pain all the time. Unfortunately I find that I still feel much of the pain, but the medicine at least allows me to tolerate it and keeps me calm, rather than constantly fighting it all the time.

I also find relief from ulcer-related pain when they are on my lips and in my mouth, with antiseptic mouth rinse called "Sterisol"-- it helps to soothe irriated and bleeding gums and helps clean the mouth without having to induce trauma on the ulcers by brushing. It also helps soothe the throat when its very sore and yucky from ulcers. Also, using a pain-relief topical gel or cream like Orajel which contains a numbing agent, can also be useful when put directly on the ulcers. For ski lesions and ulcers, you can use numbing creams and ointments that contain lidocaine or benzocaine-- they sell these products OTC or you can ask your dr. for a prescription as it will be much stronger. Putting lot-dose steroid cream on the ulcers can help soothe them also and help relieve a lot of the swelling-- but always ask your dr. first before beginning to use this. Also, steroid can make the affected area worse by causing it to get infected (because the steroid slows down the immune attack at the site), this usually occurs if your use higher dose steroid or is you put too much on far too often. I was having lots of trouble with my ulcers never healing, and my endocronolgist told me to stop putting steroid cream all over them all the time. Within a month, ulcers that I had for almost a year had healed and close right up.

Anyways, these are just a few suggestions I can offer-- you really should discuss things with your specialist about what can be done to help you out with things like the ulcers and pain. I find that if you never complain to them, they will just assume that you aren't suffering and that the Behcet's isn't really affecting you too badly.

I hope you can find some relief and hope that you can begin a treatment that will help make you feel better

-Jenna

[mark3D in reply to behcetshurtsbeyondwords]

Thank you Jenna this was very helpful

[mark3D]

Wow thanks everyone. great response. I am off to doctors this morning to get my first prescription and should hopefully get started this evening, Really not looking forward to the weekly blood tests (consultant needs to keep an eye on liver and kidney function)

Hopefully this is the start of a few more ''good days''

Will keep posting

Thanks again

[Kedaco]

Hi everyone I was told about 5 years ago that I had Behcet's but I was going to my doctor long before then with the systems I used to get a flare up twice a year but now it is every month and a lot worse. Already having Fribromyalgia and Arthritis the pain is becoming unbearable Tramadol dose nothing at all to ease the pain. Was given Prednisolone to take when I was having a flare up but made no difference and the next time I had a flare up it was the worst I have ever had. My doctor keeps sending me to see a Rheumatolgist who sends me for blood tests and then just refers me back to my doctor this has happen 5 times now I just don't know what to do next.

[mark3D in reply to Kedaco]

Hi Buddy

My doctor reffered me to the maxillofacial consultant who then referred me to the dermatologist. 1st one i saw said ''under no circumstances have i got anything like it'' gave me limecycline antibiotics and steroids and told me to come back in 2 months time. I followed the instructions, suffered like crazy for 8 weeks with nothing getting better and went back with the intention of not leaving until they found out was was wrong.

I was shocked to have another consultant who was amazing, actually examined my ulcers and listened to me. She diagnosed me and Changed all my meds. As i type this i am waiting on delivery of the new tablets.

I feel i am getting somewhere now just hope the treatment is not going to be a battle

[Hidden]

To Kedaco :

Hello,

May I ask;

Who diagnosed you/how?

Where are you based?

Are you seeing a Behcet's specialist?

To Mark:

Really pleased to hear you are getting somewhere!

[Kedaco in reply to Hidden]

Hi Tigerfeet

Rheumatologist

William Harvey hospital Asford

No

[Hidden in reply to Kedaco]

Hi Kedaco,

You’ve been passed from Rheumy to Doc 5 times and it’s not helped, the meds don’t help and you are not seeing a BD Specialist so I would suggest that is your next step.

A referral to a Centre of Excellence would probably be the best thing for you. You will see several specialists in one appointment at the same place on the same day. That should get you on the right treatment and management path.

[Kedaco in reply to Hidden]

Hi Tigerfeet

Went to see my doctor today I ask him to refer me to a Behcet's specialist but he wouldn't because there was no sign of Behcet's on my blood tests.

[Hidden in reply to Kedaco]

It doesn't always show up in a blood test and as far as I know is not reliable diagnostic criteria.

If you meet diagnositic criteria then you have a case for referral, you could print it off and take it to your doc perhaps?

The fact that you are being sent back and forth and getting worse should be proof enough that you need something more by way of specialist care. You don't have to have BD to be referred to a Centre anyway, it's at the Centre where you will probably get your diagnosis!

Try the Society helpline for advice, or one of the support workers at the Centre nearest to you (info on the Society Website). They can advise you about getting a referral.

I'm not saying this means you will get one, but anyone looking in from the outside is surely going to think it strange that you are going round in circles, getting worse, yet not seeing anyone who can help you.

behcets.org.uk/Documents/cl...

[Kedaco in reply to Hidden]

Ty for your reply I guess these days you don't get anything done until you are ill enough to go to hospital.

[mark3D]

Meds have arrived had to order a pill box.... grrrr i'm 33 cant believe i actually own a pill box haha

Colchicine

ranitidine

prednesolone

tramadol

Vit d

Vit c

think im going to rattle with this lot

[bailey23 in reply to mark3D]

Welcome to world of the dossette box. I fill mine monthly and have to laugh as I am more meds than all my relatives put together lol.

Hope they help you.

Hugs

Angela

x

[Herbiv4]

Hi Mark,

I still remember the day I was diagnosed back in 2008 and it was a total anticlimax after 8 specialist referrals and an original misdiagnosis of Chronic Fatigue Syndrome that lasted 12 years.

I now take Celebrex for the arthritis side of things and Tramadol/Paracetamol for the pain side of things along with Colchicine and Domperidone for nausea and Dosulepin at night that at one time was supposed to help me sleep but that was a long time ago now.

I take Pizotifen for the migraines but I found out recently that this drug can cause depression.... never knew this but I'm glad I do now and I may be changing to an alternative in the near future.

On top of the steroid cream and Omeprazole to help keep stomach calm I have 9 items on repeat prescription at the moment.

I did try steroids but found that my skin started bleeding on any pressure point so that was stopped.

So far I've not tried anything else that needs weekly monitoring but I should be by the end of the Summer.

Just now I'm panicking a bit about the Incapacity Benefit to Employment and Support Allowance transition because ATOS Healthcare have asked me for one of their "friendly chats" dressed up as a medical or a multiple guess questionnaire on a computer screen completed by a "qualified healthcare professional".

I am a "qualified healthcare professional" so I know just how bonkers that experience is bound to be.

ATOS Healthcare don't employ Behçet's specialists either as "decision makers" or "qualified healthcare professionals" so their opinions are not based on specialist knowledge or barely any experience of meeting anyone with Behçet's.

I'm just hoping that my specialist can head the DWP off at the pass after I meet him on the 8th August. If not then I genuinely fear the future.

Presently only getting 4 to 5 hours of sleep at night and pain is the offender that keeps me awake for much of the time.

I am also working on a medical misdiagnosis project.

I have recently gotten myself some support in the House of Lords which is pretty good progress.

Best of luck with your new meds.....

Stephen.

[Kedaco]

I have Fribromyalgia, Arthritis, Spondylosis of the spine, Compression in my neck and Behcet's and my Incapacity benefit has been stopped. This is so sick, having a flare-up at the moment and I can barely walk let alone look for a job. Pain in my muscle, my joints, my bones, burning in my stomach and all over my body, sore and painful eyes, my scull is so painful my glasses hurt me, so sore and painful down below, sweating then feeling cold, cant sleep much the pain is so intense, and I have no pain re-leave because the Tramadol doesn't do anything. One time when I had a bad flare-up I didn't sleep for 3 days and they want me to get a job anyone have any ideas what I should put on my C.V.? this is so sick.

[mark3D in reply to Kedaco]

Have you tried the Society? the offer help and support

[Hidden]

Re benefits and assessments - there have been a few threads on the subject recently and lots of links to latest information, advice and support. Some of them are long and will take some reading, but it may be worth it if you haven't seen them.

behcetsuk.healthunlocked.co...

behcetsuk.healthunlocked.co...

behcetsuk.healthunlocked.co...

behcetsuk.healthunlocked.co...

[mybehcetsxx]

hello ok so I left a post on another comment and asked how long you've been unwell.... obviously I have now seen this post now so I know anyway

heres a little good news for you....

maybe,

I hope,...

.I have been diagnosed just over 13 years now, I think, and was on tons of meds injecting myself and going for infusions.

id had enough one day and though still very poorly made a decision to start reducing my medication, with the intention or hope of one day being drug free and rid of the nasty side effects. Im not saying do this , as it was against the advise of my doctors,

but I became much better I found that the drugs didn't work for me.

don't get me wrong over the years ive had to have courses of steroids but never on the scale of when I was younger.

I am now 33 years old have two children aged 9, on sat, and 5. I was recently studying 3 days a week on the access to he in social science and due to start uni in sept mon -fri.

since becoming drug free I felt it help my behcets and I feel much better im just sayin there is hope and its not a definite that you will be on meds for a long time or even the rest of your life.

I hope one day you and other can be drug free as I do find they can make the situation worse.

x

[mark3D in reply to mybehcetsxx]

So are you completely drug free? I try to grin and bear the pain and do well majority of the time without pain relief. Certain areas are just too much

[mybehcetsxx]

hi yes at the moment I take just vitD and some anti sickness which to be honest haven't took for a week or so. my last episode was last year I had arthritis in my ankles again so steroids for a couple of days, then nothing. so far im ok hopefully you and the rest of behcets which reach a point where i am. strange things happen sometimes x

[mybehcetsxx]

don't stop taking your meds though if your pain is too much x

[mark3D]

I tend to try "as much as is bearable" to not use pain killers

[Michja]

Hi Mark3D,

You will all have a mix of meds or treatments that work the best for your individual body. My daughter maxed out on all meds but it was the third dose of Infliximab were we saw a huge improvement. At the age of now 11 it was a huge learning curve for me as I hate all medication but to get Jaida's body better we had to trust the specalists. I'm so great full for their ongoing reassurance that one day we would find the right mix. Now after 6 years we finally have our little girl back.

Good luck Mark I hope you find the right mix soon. X