Recent Diagnosis

[janNaz]

Hi Stacey.

I'm new to the site too, just posted yesterday. So sorry you've joined the WG group but they are a wondeful group to learn from. I can't give much advice on meds because I'm still learning and trying to keep track of what I putting into my body....I do know, however, that they are not good but are necessary to keep us alive.

I completely understand the excruciating joint pain and how painful it is to walk....sorry you're going through it. I'm on 25mg of pred, which helps me, so I'm concerned with the 60mg you're taking but still experiencing the pain. I'm with Sangye, I'd be placing a call to the doc this weekend.

The side effects, as you are finding out, are not fun. I've lost a substantial amount of hair, mainly in the crown area, eyelashes have thinned somewhat, and have bluish-black fingernails (but not toenails, which is kinda odd), but one good thing is I don't have to shave my legs! I don't know if I'll lose more hair to the point where I may end up shaving it, but if it does I'll be ready (lol..at least that's what I keep telling myself). I've thought about buying a wrap, scarf, bandana, or whatever, just in case but haven't yet. Also, about the mouth sores, I just realized after reading your post that the gumline irritation I had about 1 1/2 mos ago was probably associated with WG or the meds, but I didn't think of it at the time. I rinsed with warm salt water too, but it didn't seem to help me, so I used my regular mouth rinse, which I diluted with some water because it's so strong, and that seemed to do the trick for me. Up until then I had actually stopped using my usual mouthrinse because I didn't know if it would have a negative effect on the meds, but since the gumline irrigation problem I've continued using it.

We have a long road ahead of us, but always keep in mind and remain hopeful that it will get better. If you're not already, keep a journal of your feelings, meds, symptoms, etc.; this great advice was given to me and it's something I will do. Hope you feel better soon!


eileenv: Good luck on your diagnosis....hope it's not WG. My prayers are with you

[JanW]

Glad you found us, Stacey. Keep asking questions -- this is a wonderfully supportive community.

One thing that you will find out from coming here is that there are many different ways to treat WG -- and all are NOT equally valid. There are enough of us here that we can tell you (generally) what works and what might not work so well. Our collective knowledge is no doubt greater than all but the docs who specailize in this disease (and there are not that many out there). I don't know what kind of doc you see, but frankly, any one of the patients on here who posts frequently is more knowledgeable about this particular disease that the typical, even excellent rheumy, who treats mainly RA and lupus.

Good luck and ask questions -- it will save you life.

[LisaMarie]

Stacey welcome looks like June was WG confirmation month....i too was confirmed in June...on 60mg of pred...ughh and should start iv ctx this week ...po mtx did not work well for me...and the side effects sucked...this place has been my saving grace..i get more info and support here than anywhere...it's s great osasis from the hurricane we find ourselves in at times let us know if you need anything

[Deanne Hull]

HI Stacey and welcome to the group, sounds like you are having a hard time, I hope it gets better for you in the future,

Deanne

[Doug]

First off, let me start by saying a big thank you to Andrew for getting me fixed up so I can post.

My name is Stacey, I'm a 44 year old Law Enforcement Officer (well, I was until they tried to fire me due to absenteeism before my diagnosis. I got mad and quit instead... dumb move looking back) I was hospiatlized in Mid May 2010 for cavity pneumonia. They had no idea what was happening. After 6 days of IV antibiotics and a needle biopsy of a lung that showed lesions and nodules... they still had no idea. A pulmonolgist came to see me and quietly mentioned Wegener's.

You may have a basis for a suit, under the Americans with Disabilities law. The unfortunate part is that the energy needed to follow through on this may just not be there for you right now. If an attorney does agree there is a basis, ask about attorney fees being recoverable (I believe the Federal law allows this), then make your decision.

[Jack]

The same thought had occurred to me. Here in the UK it is called Constructive Dismissal and covers anything done to you at work that makes it difficult for you to continue your employment.

[elephant]

Hi Stacey, How are your sinuses...when my teeth hurt it could mean your WG is flaring in the sinuses and then it radiates to the teeth. Or it could be a sinus infecion.
The joint pain is awful, once your WG is controlled the pain will go away. Do you see a WG specialist?

[Lola]

Hi Stacey, Sorry you're having trouble with your mouth. I had suffered for years with mouth ulcers, both before and after diagnosis and subsequent treatment. My hygieniest recommended Biotene toothpaste. It's formulated for dry mouths, but the biggest benefit to me was the lack of sodium laurel sulfate - a foaming detergent contained by most toothpastes. The lining of my mouth was literally stripped off at times before I switched toothpastes. Might be worth a try. I avoid all mouthwashes, as well.

[misskay]

Hi elephant and lola...

elephant, sinuses are awful! I dream of the day I'm not blowing bloody tissue and clots. I wondered if the teeth were from the sinus pressure. Sometimes the pressure in my face is so bad I can't stand to wear my glasses, they hurt the bridge of my nose too much. Am on Bactrim, doc thinks that may help. I'm only seeing a Rhuemy right now, the closest specialists are Cleveland Clinic, and that's an impossibility for us right now. This guy does has severeal (I think he said 5) WG patients tho... and came highly reccommended by my Pulmo, so I have hope that he's on the right track.

Lola, thanks for the advice about the toothpaste. Gonna see if I can find it or something similar. May call my dentist if I have no luck and see if there is something he can suggest. So far I haven't had the mouth ulcers, just small painful blisters at the gumline at the roof of the mouth. I've stopped using any mouthwash also, but may look into a medicated one (something else to ask my dentist about). When I get the blisters I rinse with warm water and a little peroxide.

Jack, wwould love to sue the ba*****ds, but small southern town, good-old-boy attitude, and I'm female... even if I thought I could get anything out of it, I don't know that I have the physical or emotional energy to deal with the fight. I'm in the process right now of getting all the paperwork together to file for disability...

[Sangye]

I'm only seeing a Rhuemy right now, the closest specialists are Cleveland Clinic, and that's an impossibility for us right now. This guy does has severeal (I think he said 5) WG patients tho... and came highly reccommended by my Pulmo, so I have hope that he's on the right track.

I'm sorry to say that a doc who's only had five patients with Wegs is really no better than one who's never treated it. If transportation costs are an issue, there are philanthropic orgs that fly people for medical treatments at no cost. If it's something beyond that (eg insurance), then please at the minimum insist that your doc get a VF consultant doc involved right away.