Hello

[vdub]

I hope you made it through the t-storms today! Welcome to the forum....

I was dx'ed April 2010. The preds will make you feel like a million, at least that was the case with me, but it can vary. They will also make you gain a lot of weight, so be prepared for that. I don't think it is something you can fight, at least not very successfully.

[Robert]

Micheal - it's good to hear that you're feeling better now after starting your treatment. I hope I have the same luck. I've been feeling weak and short of breath since I've been out of the hospital. The preds have helped with the body aches and chest pain but that's about it so far. I'm ready to finally get some energy back and hopefully get back to work. I'm not used to sitting around the house so much. It's driving me nuts lol

[Robert]

Vdub - made it through the storms just fine. Was mostly just rain. Thankfully no tornados or anything bad this time around. The preds seem to be helping some as far as pain goes but I still have very little energy. The weight gain I can understand. Have been eating a lot since I've been out of the hospital. It's prob good though considering I lost about 20 pounds in the past month before I was diagnosed.

[jmmilliorn]

Robert,
I think Sangye's advice to find a Wegener's specialist is good advice. I was diagnosed in Jan. I live west of Fort Worth sixty miles, and I had no trouble finding a rheumy to treat me, but they don't see enough WG to know everything they need to know to help you in my experience. Just enough to be dangerous. I finally wised up and went to the Cleveland Clinic where they see WG every day all day. What a great place! Within one hour they properly diagnosed me and reversed the wrong vasculitis diagnosis of the FW rheumy. She was close, but no cigar. I took Methotrexate from Jan to May, but had a toxic reaction. Now I am on Rituximab and doing better. The CTX is a stronger drug with more side effects I'm told. You won't believe how the Prednisone will affect you. It makes you feel better at first, but eventually drags you down. Unfortunately it is a necessary evil in obtaining remission it seems. I sleep 3 hrs a night (since my first WG symptoms in Aug) on average and I've gained 40 lbs. (see my album) Can't exercise it off yet because I am too short of breath from the Pred. and/or the WG. Can't tell which.

It is only a 2 hr flight to Cleveland, and if you have AAdvantage mileage, it is a cheap trip. They took my insurance and you won't find a nicer place than the C.C. They have an appointment desk that handles everything. I'd rather fly there than drive the 2 hours to Dallas to see someone who doesn't know WG like the C.C. My local internist coordinates with my Cleveland Clinic doc now that I've been properly diagnosed to handle day to day symptoms and meds. My CC doc gave me her iPhone number and email address, so we can communicate if we have to.

Best wishes to you on your treatment. I hope you prosper.

[kulharv]

Hi Robert,

I have just started the same treatment and will be getting it every 2 weeks and am on 50 mg of prednisone. Horrible. I did feel tired after my first treatment and yes running to the washroom at all times. They will probably give you Mesna as well which is to protect the bladder. I was given 2 doses while at the hospital and then 1 to take orally when I got home.
I, like Michael, cannot sleep and I think it is due to the prednisone as my dose is split half in the morning and half in the evening but without it I can't even get out of bed.

Hope you get your appointment soon.
Good luck!

[vdub]

One of the drugs I take is ambien so that I can get some sleep. Good stuff! Suspect I will be on it the rest of my life.

Like kulharv, I have a hard time getting out of bed. Sometimes it is really painful. An hour later after getting my drugs, all is "generally" well. Sometimes, though, not even the drugs will take away the aches and pains. However, I do have a small stash of oxy. I have used it twice in the past 6 months when the aches just got to uncomfortable.

I think about half of the drugs I take are to counteract the side affects of the drugs that are keeping me alive. In one case, I have a drug that counters the side affects of a drug that I'm taking to counter the side affects of a primary drug, i.e., 3 deep..... Are we having fun yet?

[Sangye]

Kulharv, unless you are on a very low dose of pred (eg below 5 mg) there is no reason to split your dose. That makes it impossible to sleep! You still might have trouble sleeping on 50mg but it will be better if you take all the pred first thing in the morning. Get your doctor's okay before you change.

You should also be taking an acid-blocker daily because the pred will destroy your stomach quite quickly.

[RudiK]

Hello Robert, I'm from El Paso/Tx where it gets pretty hot too. But, our humidity is nowhere as high as in your area. I was diagnosed about seven weeks ago. I started with 60mg Pred, which is now reduced to 10mg, I'm still on 100mg Cyclophosphamide in pill form, plus several other meds to counter any side effects. My bad cell count is now 30% of what it was in the beginning. WG did damage to my kidneys, the doctors are trying to stop any further deterioration.
Good luck to you.