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Advice Needed Please
Hi, i am new to this site, and i just really need some advice.
Recently i have felt amazing, the best ive felt in years, and finally thought i was myself again (fully) doing things like going on nights out with my friends. My consultant even started to taper down my sted. I also took on an extra job (i already do college full time and work part time in a cinema and also saturdays in a hairdressers).
Buut about a month and 1/2 ago i started feeling a bit crappy and got tonsilitis. Pretty much while i had tonsilitis i got a rash on my face by my nose (like a bumpy, red angry looking thing) i was put on penecillin. Once the tonsilitis went i felt a bit better and carried on but the rash didnt go. I popped back to the nurse about it and they gave me Ethromycin. That didnt clear it up. Ive been back again and now im on a steriod cream.
Since then ive had spotting when blowing my nose, i have like lumpy grains in my nose that are really sore, and today ive got what looks like oral thrush on my tounge. Ohh and my mouth has been itching like crazy (waking me up during the night crazy).
On top of that im just feeling very tired and im sleeping a lot more than normal.
Can i get some advice on what to do as im a bit fed up right now.
Look forward to hearing from you all
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I'm going to ask the obvious question...I'm assuming you have a positive dx of WG (as opposed to another autoimmune disease or something else). If so, it sounds like you could be having a flare, or your pred dosage is getting too low to fast (you mention that you are tapering). Are you on any other immunosuppresant or had any other changes in medication lately. All your nose stuff defintely sounds like WG, sorry to say.
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Hi yeh i was DX Jan 2006, with nose and lung involvement.
Im just having 6 monthly Rituximab, im due a dose of it next month, i thought it may have been a flare which sucks.
Ive got a check up with my rhumy on monday, do you think it would be ok to leave it til then? Im also working everyday til then!!
Isnt it hard having this disease and working full time x
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Hi Aimee, welcome to the group!
I have the same questions/comments as Jan. I also want to add that if you have Wegs you should see a doctor each time you have symptoms that are not very run-of-the-mill (eg odd facial rash). Have they checked you for lupus? It can present as a facial rash with a distinctive appearance.
Also, working in a hairdressers (even part-time) is very hazardous to your health. It's one of the most toxic environments. Hairdressers have one of the highest rates of cancer of any profession. Most of the chemicals used are carcinogens and lung irritants. Solvents are one of the few known causes of Wegener's and they certainly can worsen an existing case. I know it's hard to find jobs, but please consider replacing this one asap.
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I would try to get in sooner if I could -- where ar you located? Is it likely that you can even get in sooner? When I heard about the rash I thought lupus as well. Probably want to get the rheumy to run the bloodwork -- doesn't sound like something the GP should be treating topically without knowing what's going inside. Was your rheumo tapering your meds in response to bloodwork or just your symptoms (or lack thereof)? I know that doctors vary in how they declare remission of the disease. Hope you can get some answers soon. And sorry, but must agree with Sangye -- a place with the kinds of chemicals as used in salons is not a place for weggies.
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Oh i never knew that, il have to ask my rhumy about that. I am in college completing my L3 in Complementary Therapies..maybe that would work out better for me!
Ermm on a short my story is: diagnosed jan 06 aged 17 with 6 months proir having arthritis, about a month before DX i had regular nose bleeds and gingivitis. Then a few days before new years eve i got plurecy and things escleated from there.
When i was DX i got put on 60mgs steriods and Cyclophosphamide for 3 months iv and 6 months pill form. I went on Azothiaprin which didnt agree with me so i went on methotrexate. Got weened of that (while still having grumbling WG) an now im coming upto my 3rd course of IV Rituximab. Im on 7.5mg of steds and the lowest iv ever been is 5mg.
Thanks for all your advice, i just wonder is it ok for me to wait until monday or do you guys suggest i see a dr straight away? What would you do in this situation? Also has any of you guys had any of these symptoms?
Thanks again for your help
xxx
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Hi Aimee, welcome. Yes call your Rheumy today. The rash is called the butterfly rash and it is related to Lupus. The chunks coming out of your nose is a sign of a flare and then you mentioned your tired. Also your lungs might be involved because this disease is so sneaky.
Wish you well!
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Aimee, I second Elephant's advice.
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Aimee,
As the newest nag on this sight who is interning with the powerful Nag trio, Jack, Elephant and Sangye, I have to agree that you should contact your Rheumy sooner than Monday. Yes it is challenging working full time, I can't get the grandkids to take turns picking only one day a week to eat (LOL) Having health insurance used to be nice, now it drives every decision. I work when I'm tired because I need to keep my time off balance at a level that gives me time off.
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... The powerful Nag trio... SO funny. We should have a theme song. I chose the Potty Song, it's someone else's turn.
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