This happened to anyone?

L1985

Hi everyone

Had yet again another confusing appointment with the rhuemy. In march they thought I had Behcets and referred me to a specialist. I thought finally a name for whats causing these horrible symptoms. The specialist said he wasnt confident it was behcets as I had some symptoms but not all.

Anyway yesterday the rhuemy said I have symptoms of behcets but also symptoms of lupus but I dont fit neatly into one or the other. They have tried treating me as if its behcets and had no improvement and now they are trying to treat it as if its lupus and also taken extra blood.

The rhuemy said he didnt want me to develop and get full blown behcets or lupus as both are not pleasant.... I dont either but im still left without a real name and worrying if this treatment will work and if not what is wrong with me?

Could I be like this for years? Has anyone had similar? Also what do I do with things like life insurance when I dont really know what it is. Do you just say I have arthritis?

I dont want to be ill but I want to know whats going on aswel as at the moment my symptoms are getting worse and worse and there has to be something thats causing them.

Thanks for reading

Lulu xxx

valval

hi i am still inflammation arthritis no real name but as they are treating it i do not mind to much but would love to have name if only to find out what the future holds val

suzygirl

You can get combinations of both and lupus is well known as a mimicker of other diseases which is why it can take so long to get a diagnosis.

Maybe the treatment for lupus will help, has he put you on plaquenil? (hydroxycholoroquine) That takes up to 3 months to build up in system, maybe longer for some.

It is confusing and on applications I would put arthritis, lupus tends to scare them. :roll:

LignumVitae

My arthritis has no name either and it's been with me for quite a while - I call it many things but they possibly aren't likely to be displayed here. I struggled with that for ages - it can get quite overwhelming having mystery arthritis X, as can the many different drug regimes I tried - at times it is a bit like being Goldilocks - this one doesn't work, this one does a bit and eventually one will be just right.
I decided the only thing to do was to know that it was there, it was doing things and to keep an eye on what those things were. I manage the symptoms, do my best to make sure my body is in as good a condition as possible and just focus on what I do know and can do, also remembering to report any changes back to the rhuematologist.
I had a detailed discussion over the phone with a nurse at the life insurance application stage. She knew her stuff, I described my symptoms and treatment and they insured me based on that. I think they base the need to do that bit on what meds you take though, or they did with me.

L1985

Thanks for the replies. Its just nice to know your not alone!

Suzygirl- Yes its plaquenil im taking. I have been put on a high dose of steroids to reduced after x amount of time to help tide me over until the medication starts to help. Hope you dont mind me asking but do you have Lupus?

Lulu xxx