Is it possible to be symptom free?

[LULU85]

Hi everyone

I have a rhuemy appointment tomorrow and im hoping I get some medication which will help...been hoping for past year though!

Just wondering am I been naive in thinking its possible to be totally symptom free?

I was given Colchicine to try at the beginning of April when I finally got a diagnosis of 'possible' behcets and I havent noticed any difference in my symptoms if not they are getting worse. Im still getting mouth ulcers/uclers down below, admittedly they are not last as long so the Colchicine must be doing something. However I have noticed no difference with the joint pain and fatigue. Im now suffering with really bad muscle ache in the tops of my arms and legs. Pushing a hoover round/washing my hair is agony feels like I have been working out in the gym for weeks on end. Im 27 so I really should be able to push a hoover round and do other activities without having such severe muscle aches.

My joints in my hands and especially my knees and hips are driving me crazy with constant throbbing. My hip feels like a nerve is trapped as every time I take a step I get a shooting pain up and down my leg.Its become too painful to sleep on. I take Amitriptyline on a night but even this is not helping like it did.

Also a few weeks ago I started with like flu like symptoms then came out covered all over my arms,chest and face with a red pimply rash...I took pictures to show rhuemy. It only lasted just over a week and then went wasnt painful or itchy just looked strange. Has anyone had this?

I have taken steroids in the past and they havent helped....my brother has crohns and is steroid resistant too so must be a family thing?

Just wondered if it is possible to totally get rid of symptoms and if anyone has achieved this? Are some drugs better for treating Behcets then others?

Thanks

Lulu

[UKADMIN Partner Behcet's Syndrome Society]

If you have a look at the fact sheets on the Behcets Society Website they have one on treatments which might answer some of your questions

[Jazzy21]

I think from what I have read and from what I have seen BD can have periods of remmision but how long I dont know as my symptoms are there all the time. The muscle pain you speak of is normal to me as if I have been lifting heavy weights and the next day the muscle are pulled and painful. Meds are dependant on the individual. Hope this helps.

[LULU85]

Hi

Thanks for taking the time to reply to me. I have found the factsheets useful.

Jazzy - I have read about things going into remission but like you I have not had that. I have been having joint pain for over 2 years now (everyday) and its frightening that its getting worse not better....admittedly I havent been on treatment for two years but its still scary. Got an appointment with the Rhuemy tomorrow and as ever im thinking this next appointment will be the one that they give me something to banish all these symptoms....just hope im not been totally naive!

Its good to talk to others going through the same but its sad also why our paths have crossed.

[Denise--]

I had a rash before (and get frequent problems with skin-itchy, red). When I was doing my thesis for college I got a mad rash on my face!! (not a good look). My face was so swollen from it I thought I would never look normal again. This was before I was diagnosed. I was put on steroids and it went away. That was probably the worst one - I think it was due to stress piling up!

[Hidden]

Yes it is possible to be symptom free. The degree, type and duration of symptoms varies enormously from patient to patient and this is one reason why it can take a while to get the treament balance right. You may benefit from topical treatments as well as oral medication. As a multisystem disease BD can require multi system treatments. Lifestyle also has a part to play - the condition needs to be managed, not just treated. Also, I suggest you don't assume that every symptom you have is attributable to BD, even if someone else says they have the same problem. For example, the leg pain could be sciatica

. Regarding steriods, not everyone takes or needs steroids for BD and if they do it can vary from a small regular dose to short courses when a boost is needed. They can be given in different ways and one way may suit you better than another if you do require them. Your brother not benfitting from them doesn't mean the same will be true of you - it should be in your family history about your brother and taken into consideration when any treatment is considered. Unless you know for a fact that they will not help you, I suggest you keep an open mind. I hope you get on well at your appointment today.

[Dreamcatcher]

So sorry to hear about your problems with pain, Lulu,,,that is so frustrating, especially at your age. I know it doesn't help much, but i am thinking about you...

[maggiemotherwell]

Hi Guys,

I was told at the end of last year I had BD, I have had constant mouth ulcers since last August I have also had a couple of bouts of Vaginal ulcers, constant joint pain and I also lost the vision in my right eye in April 2011.

My vision returned after a few weeks.

Mouth ulcers I use colchicine 500mcg, Betnesol 500 microgram and Diflam oral rinse.

Muscle and joint pain Naproxen 500mg but with the Naproxen I was given Omeprazole to protect my stomach.

Vaginal Ulcers I was given Prednisolone foam, usually used for Ulerative colitis, this has really help with the ulcers in that region as well as the colchicine.

I also take the odd 2mg Diazepam, which keeps your stress levels down and also can help you relax a little so the ulcers are not so bad.

The joint and muscle pain can be terrible at time but you have got to keep moving try going for long walks and doing workouts I know its really hard but it does help I havent had to see my rheumy now for a good 2 months and I was there nearly every week.

Hope this helps xx

[LULU85]

hi everyone

Thanks for all the replies. I saw the rhuemy yesterday and had a confusing time. They have said they are not confident with what I have as I had some symptoms that goes with Behcets but some that also go with Lupus. I have a positive ANA so they took 8 files of blood to see if I have any of the other lupus anti-bodies. Also back on oral steriods and my treatment has been changed to what they would give someone with Lupus to Plaquenil. If that helps they said its more of a lupus thing I have but at the moment I dont have anything full blown and they would like to keep it that way. I really dont want to feel any worse then I do now just to get a name either. Still confusing tho.

[LULU85]

p.s I was on x3 500mcg of colchicine and it didnt stop the mouth ulcers or joint pain so its been stopped

[maggiemotherwell in reply to LULU85]

Lulu,

Ask your G P for Betnesol 500 micrograms, you disolve them on the ulcers they do help, but the dont clear them completly, it was my oral surgon that put me on these, also try the diazepam, which do relax you the more you stress about the ulcers the more you get.

Take care.

[LULU85]

hi hun

Thanks for the info. I was given a mouth wash to use. I have had three out breaks of uclers since april but they were what I would call 'normal' size mouth ulcers and not like the blisters I was getting before so I was saving the mouth wash to use if they were the really nasty ones....hope that ramble made sense

Ill write it down as its worth knowing different things to ask for and try thanks

[runninggirl08]

I have had be for 30 years...I have had a few remissions....6 years, 3 years, 2 years and one year on and off. However have not had a remission in last four years since it affected my CNS and lost hearing. Years ago I was a triathlete during some of my remissions