Advice Needed Please

[aimee1412]

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

[JanW]

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.

[aimee1412]

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

[Sangye]

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.

[JanW]

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.

[aimee1412]

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

[elephant]

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!

[Sangye]

Aimee, I second Elephant's advice.

[Lightwarrior]

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.

[Sangye]

... The powerful Nag trio... SO funny. We should have a theme song. I chose the Potty Song, it's someone else's turn. :D

[Cindy M]

Hi Sangye, I know you said that working in the hairdressing business is dangerous which I totally agree with but what is your opinion of coloring your hair. This is the one thing that I look forward to every 3 to 4 months. To sit back and have someone spoil me and cover all that grey is a real treat for me. The only bad thing is looking into the mirror and seeing the extra weight and moon face from the preds. Also, I think I remember reading something about getting a message and how it might not be the right thing because it can boost your immune system. Am I remembering this correctly or not.

[Sangye]

Cindy, whatever you put on your skin gets absorbed into your bloodstream. The chemicals involved in coloring your hair do double damage as they're absorbed into your body and you breathe the toxic fumes. I don't know what to tell you as an alternative. Maybe there are natural ones? I sure understand the mirror thing and pred weight.

Massage is dangerous with the drugs we take--especially chemo-- because it can detoxify the body rapidly. Unleashing large amounts of chemo into circulation can be damaging and even deadly. You can get very light massage, just don't get deep tissue massage. If you're currently on ctx, I don't recommend getting massage at all. It's too risky. Licensed massage therapists know all this-- just tell them you've had chemo or similar drugs.

[elephant]

Good question Cindy. I am getting my hair colored today and was thinking the same thing. Thanks for Sangye for the info, so I need to find a alternative to covering the gray.

[aimee1412]

Hi, thanks guys for all the replies, i really appreciate it.

I phoned my consultant in addenbrooks (thats about 4hours drive for me) and briefly a registrar phoned me back and explained that she thinks its a flare and that my medication needs sorting out..and maybe my ritux being brought forward! Also i had to phone my local consultant. Im getting a call tomorrow of my local and another call from addenbrooks.

Ive also been to an out of hours GP at the hospital and i have found out i got UTI too! So im lucky at the moment haha.

As for hair dye! Im a regular of colouring my hair and personally never had troubles..but if you are worried you can get natural hair colour from holland and barrats (health stores) that have no ammonia in them. They also do 100% grey coverage. There shades a limited but its worth giving them ago..and you can pay for a cut and blow as a treat.

As for massage! i do have regular treatments at college as it is part of my course, it doesnt really speed up the immune system, but does help the lymphatic system (immune system is part of this system) drain infections and toxin build up. I agree and I would not massage any person on chemo, unless terminal..or with a GP referral. Massage is highly beneficial and so is reflexology. If you guys are really interested in having any i'd see a local therapist and maybe have a GP referral if you are on cytotoxic medication.
Aromatherpy massage is also great as the oils are natural and help you deal with some aliments like joint ache and if the steriods are keeping you up, instead of taking a sleeping pill try burning lavender or having a few drops on a pillow.

OOhhh great topic of converstation!! haha

But again, thanks for all your advice and il let you all know what the outcome of the whole shabang is.

Hope all is very well with all of you xxxxxx

[pberggren1]

Sangye, I sometimes get my Dad to massage my feet when I have a bad headache. Is that considered deep tissue massage? Can that release the Cellcept I am taking?

[elephant]

My husband has been rubbing my feet for twenty years. Could not live without it. Please say it ain't so! :)

[Sangye]

LOL-- foot massage is okay. There are reflexology points there but nothing that would directly release toxins the way a massage (full-body, back or legs/arms) would. Aimee's info is exactly right. Essential oils are great-- just be sure you don't use any that boost immunity. Easy to look them up on the web.

Aimee-- I'm so glad to have you on board. Your training will help a lot of people on here. One comment about the hair coloring: you said you haven't had any problems yet. While no one has proven causation in all Wegs cases, there is evidence that it can be caused by certain chemicals (eg solvents). You are young and you need to keep your liver as free of toxins as possible, especially considering all the Wegs drugs we take.

[Cindy M]

Thanks for all the info. It's too bad that a good rub down could be the wrong thing. I am going to look into the Natural hair dyes.

[Sangye]

Oh I know... I used to get massages frequently. I never liked light massage-- always said a good massage is when they pick up your muscle and scrape under it. :D I absolutely crave a deep massage. But with all the drugs I've had and have, I'd probably die on the table. :D

[moyan]

Hi, nice to see you all! What is UTI?

[Jack]

Urinary Tract Infection.
(can be very nasty!)

[moyan]

Thanks Jack. I never took latin at school, seemed to complicated :)

[Cindy M]

Sangye, I don't mean to sound stupid but do you think if the dye was without ammonia that it would be considered safe. You seem to be such a great source of knowledge that you are my first thought when I have questions. My hair is becoming more dry and scraggily looking and sometimes after a color it has more body. Also its about the only vain thing I have left.

[Sangye]

LOL-- well that's better than the first thought some people have when they think of me! :D

I don't really know about alternatives to the hair dye chemicals. Ammonia is bad, for sure, but it's not linked to cancer. Hair dyes do contain benzenes, which are strongly linked to cancer, bone marrow suppression, immune disorders, and infertility to name a few. The fact that the dye is inhaled and absorbed through the skin makes it especially bad. I think there are other dangerous chemicals in dyes, but I don't remember what they are.

It certainly isn't helping your Wegs to use the dyes. It could be keeping you from getting better.

Have you researched natural alternatives?

[Cindy M]

No I haven't yet, that was going to be my next step. Thanks for the information, I never thought of it as stopping me from getting better.