Wish i felt better

[Jaha]

I'm sorry that you are going thru a bad time right now. Are you seeing a rheumy or specialist for you AI's? There are a lot of people who have more than one AI. It becomes really complicated with multi illnesses and the different treatments for them can really make you feel worse. I would really question no preds and also using MTX with the other ones you mentioned. I am still not in remission after trying MTX, Imuran, CTX, Cellcept, and four rounds of RTX. I am however showing progress with my labs and shrinking some of the nodules in my lungs. I feel crappy most days, but when feel some energy I go and pay for it later. Best wishes to you for getting the proper care and tx's for your AI's. it will get better, remember baby steps!

[Miranda]

It sounds like you need to find a doctor who is very familiar with WG. To be honest you may never feel good ever again. We all have good days and bad days. Good days are of course better than the bad, but just because its a good day doesn't mean you feel better. I cannot even remember the last time I felt normal. I would do anything to feel that way again. Also, we look fine on the outside so no one understands. Thats why this place is awesome. People get us here. Its the disease and the effects of all the medicines too. Sometimes the effects of medicine seem to be worse than the disease. Just remember without treatment though the alternative is much worse than what we feel right now. It could be fatal. Stay positive and keep your mind off it as much as you can. If you are into praying Pray. IF you are not, all of us here who do will do that for you. Keep your head up!

[Jayne 14]

I get sick of people saying " u look so well " when I feel so bloody xxxxxxx ****
This place truly helps in every way
Let us help u through you tough times
Big hugs xx


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[drz]

Don't give up... It took me 4 years to start feeling better and even now I have a bad day or 2 every couple of weeks. If you look at my sig line I have both GPA and pa, too. Of the two, I think the pa is the worst, but its really difficult to tell the pain from one disease to the other.

I'm surprised you can't take pred. If drz doesn't see this thread, then pm him. I think he takes pred and is diabetic.

I still take 5 mg pred and will indefinitely. The pred raised havoc with my blood glucose levels and i had to triple my insulin to get it back down even at lower doses. At the high dosages I ranged from 400 to 40 most days. Now I can get my A1C under 8 again and do OK most days. Diabetes takes a lot more time and effort to manage than Wegs and pred really increases the problems but I think i need it to mange the Wegs too.

[vdub]

...did u take enbrel?

I never have done Enbrel. I would certainly ask about it if the mtx wasn't working so well. I'm on 20mg mtx 1xwk and 5mg pred 1xday. I don't Invision ever being off either pred or mtx.

" u look so well " when I feel so bloody xxxxxxx ****

Isn't that the truth? I think we all hear something similar way to often.

The other thing that annoys me a great deal is having people who don't even have the bloody disease telling me how I feel or giving me their opinion on how it should be treated. I have a relative who insists on pushing her opinion on me and she doesn't have the disease or any medical qualification of any kind. All she does is read the internet and thinks she is then qualified to offer an opinion. It would be less annoying if she at least had wegs.

[renidrag]

Phil Mickelson looks well too. Now if he would do some Public Service Announcements regarding Vasculitis awareness such as PA instead of making money for big drug companies I might cheer him on again. Maybe we could E-mail him with our concerns. Wanted to write this for a long time.
Dale

[vdub]

I would tend to agree with you, Dale. I can't say if enbrel is any better than anything else because I have no personal experience with it. But I can say that mtx is pretty effective and very cheap.