Finally diagnosed with something.

[belladonna]

The dermatologist called me yesterday to say that according to the biopsy, I do have "subacute cutaneous lupus erythematosus". Soooo my rash is not caused by my laundry soap after all... :rolleyes: Been telling that to doctors for years now after buying and trying every prescription cream known to man. :hissy:

The "arthritis" in my joints, (hands, elbows, hips knees), is apparently not arthritis but, "connective tissue disease", so says the rhumatologist I was referred to... (No wonder all those pills and prescriptions for arthritis didn't do anything for me except hurt my stomach and rack up big prescription bills... Even tried the q-ray, and copper bracelets and glucosamine...) I was so frustrated by all the aches and pains I had so badly in Jan., that I cried threw most of the month? :cry: (It's Jan., that drove me back to the doctors office and finally got me a referral to a rhymatologist.)

My being ridiculously tired soooo much, hasn't been explained as yet... I slept threw the entire month of Feb?. (Not that much of a loss really, as Feb here is bitter cold). I really couldn?t stay awake for more than 2 or 3 hours at a time. Ya I guess it could have been depression, but I don?t think so. I grew to find it funny at times when I kept nodded off in chairs etc.

I have another appointment with the rhumatologist in July to follow up all the test results. So far he took me off the arthritis pills and prescribed muscle relaxants, and the dermatologist prescribed a new cream for the rash, but that?s it. The rhymatologist sent a note to my G.P. (a very nice lady), saying that if the test results don't show positive on the rash, there would be nothing else he could do for me. Well the rash at least did show positive, so I am hoping he can do more cause 2 cyclobenzaprine at bedtime is doing nothing to help me in the daytime. :afraid: I have already had to quit my 'day job', (waitressing), cause I just couldn't carry that much stuff... Even a full coffee pot got to be a problem... :sigh: You have to be able to move fast and carry 3 or 4 meals at a time during the dinner rush. Also there were no breaks at all, (except for the bathroom, not even a lunch break), and I just couldn't do it anymore. I felt I let the hole family down there... :sigh: We can get by without the money, but it's much harder on everyone...

Thanks for the opportunity to rant. Seems like I?ve been a ginny pig for years but now this is getting seriouse and I want some real help! I'm tired of being so tired and sore all the time? :yawn:

[redrose77]

call and see if the rhuemy can get you in sooner. You need to see about getting better medication. I don't get it, why no treatment beyond muscle relaxers? Any chance of seeing a different rhuemy who would do more? Sorry but this seems to be a little too long to wait since the skin test was positive. Besides which why make you suffer until then why couldn't he tell your GP what meds you need and have them started if you have to wait until July for a visit with him??? Maybe someone with more experience will come along with more or better advice.

[Clare.T]

I wonder why the dermatologist can't run a lupus panel and also start you on Plaquenil.

It is very possible that the joint pains and the fatigue are associated with the lupus skineven if there is no blood work to support a systemic lupus diagnosis.

Why take you off pain relieving meds ? It sounds nuts to me but you certainly are due an explanation

There maybe other things like anemia contributing to the fatigue.

It's daft having to wait until July even if it's early in the month. Plaquenil takes time to fully take effect but at least it should start helping your skin within a few weeks.

I would also have a look at pictures of lupus skins and see what yours most resembles. It might not be typical of course, but it seems strange that a typical discoid type of lupus skin could be mistaken for an allergic rash. Does it look like the subacute sort ?

Have a little tantrum ............. even a big one! :) And here's a loan of my Clare.T Taser© to help you along. :lol:

I expect you know to be very very careful of sun exposure.

All the best

Clare

[alobreto]

I agree with the others that there's no sense to making you wait to get started on helpful meds. As was said, some of them take time to reach a blood level where you start to be able to tell an improvement.

As for not treating your pain: There is NO excuse for that!

Many docs are AFRAID to adequately treat pain. They also won't refer you to a pain specialist unless you TELL them you want the referral. A pain specialist is a doctor of anesthesiology with additional training in symptom control. Do not confuse with a pain CLINIC, which may not even have ANY kind of doctor on staff.

I'm so sorry you've had to endure all these awful symptoms! I hope things start turning around for you soon.
Regards,
Angela :flowers:

[belladonna]

I'm hoping for better treatment options but it seems I have to wait cause, unless I'm sick enough to be in the hospital, it's a 3 month wait for any specialist here in Ont. Canada. :(
Here is a link that shows the type of rash I have, picture #3, but it started out 20 years ago as just red spots like in pictur#1:
http://www.emedicine.com/DERM/topic248.htm#target1
He did send me for lots of tests. Chest x-rays, and breathing tests, cause sometimes I have trouble breathing. He took tons of blood etc., but the only thing he saw that clearly points to lupus, at the time of the appointment, was the rash I guess. He did examine all my joints carefully and I think he could feel where I was sore cause he spent more time on those parts. I was feeling mostly ok, (except for some joint paint in my hands and elbows on the day of my appointment. Of course that was 3 months after the appointment was made and my flare was pretty much over by then. It seems to be winding up again though, so maybe I will be in mid flare by the time of my next appointment. (Mixed feelings about that. :afraid: ) I don't want to flare up again, but maybe it makes a difference for blood tests and the like? :unsure:

[dmb 123]

Hi Belladonna....I too have just been recently diagnosed and know exactly what you are going through. I have been treat for rhuematoid arthritis for over 2 years and none of the pills worked and as for all the lupus symptoms, at first rhuemy just shrugged and said I had a virus. I now have to wait a month before I see the dermy and then start anti malaria treatment and I am just expected to sit at home having mostly bad days and the odd good day until then. I know it sucks but sometimes it makes you feel better to know you're not alone.

By the way, your nickname grabbed my attention first as my name is Donna Bell

[belladonna]

Originally posted by dmb 123@May 21 2005, 08:26 AM
By the way, your nickname grabbed my attention first as my name is Donna Bell
:shake: My real name is Donna, but my hubby is 1/2 Italian and he gave me the pet name Belladonna. ;)