Finally getting off Preds

[elephant]

Hi Rose, no I have not gotten you email? I am so sorry you have Shingles, that is horrible. If you can't get pain under control ask your doctor for a Pain consultant. Is you mail box full Rose, you might have to empty it. How are you otherwise re: life and WG?

[Sangye]

Aww Rose, I'm sorry to hear you have shingles. I hope it clears up soon. Take very good care of yourself.

[Minneapolismark]

Wow! It is great to know that it is possible to get of preds! I am definitely NOT loving that drug.

[JanW]

It is not only possible, Mark, it is in fact the recommended course of treatments. Experts at the symposium said that patients should be looking at only 3 to 6 months treatment with pred, but, in fact, only 3 to 6 months treatment with a "stronger" medication (e.g. ctx or rtx) with a planned step down to mtx, immuran, cellcept. Some people can get away with not going on pred at all (me), although that is the standard protocol so I would NOT attempt that with the 'local rheumy down the street"

Doctors believe that there are some patients who may not be able to live in long term remission with immunosupression, but none believe that pred should be the main driver of that immuno suppression.

[Minneapolismark]

Good to know. I am trying very hard to get off preds. All the way down to 20mg/day now! Big drop from 70mg. It has NOT been good for my waistline!

BTW, what is the conference or symposium that is occasionally referred to on the site? I would be very interested in attending any such gathering that may provide useful information and contacts.

[JanW]

It is the vasculitis foundation's symposium. It's held every two years and I went this year -- it was in Long Beach CA. I'm sure you can probably see talks etc. from it up on the VF's website now. My ENT spoke and I also got a chance to see many of the docs of the Weggies here -- including Seo and Langford. Lovely people and they love Weggies! We dominate the conference, even though about a dozen other diseases are represented under the vasculitis umbrella. They did this to try to move WG and the others out of 'orphan' status. Didn't work!

[vdub]

It has NOT been good for my waistline!

I'm not on any *sone because of wg, but I'm on cortef (30mg/day) for the pit (or lack of). I gained 40 pounds almost over night. It was extremely devastating to me to have to go out and buy new clothes. I kept thinking "gee what a waste of money, this is just a temporary situation", then reality hit....

[Dumpy]

Sorry about taking so long to get back but my BFF really threw me for a little bit of a loop. My Pulmonoligist called last week and after getting the additional blood work back (Proteinase 3) it is a flare up. I am going in tomorrow to have a CT scan to check if there has been any damage done to my lungs. I saw my ENT Friday and my sinuses are doing good which is one thing that really gave me fits originally. I'll have more blood work done on Tuesday then I see my doc again on Wednesday. He has already up my preds to 60 mg a day and put me back on immuran 50 mg a day.
My flare up started with my joints in my knees which i thought at the time was maybe arthuritus but as it progressed it got into all of my joints randomly moving around from 2 to 3 at a time. Then my muscles in my calves got extremely tight and swollen to the point i could hardly walk and it took the full 60 mg of preds to get my BFF to back off. Feeling better now and just waiting to meet with my doc.

[Sangye]

Oh Dumpy....I'm so sorry. I hope your lungs are okay so you can just stay on imuran and pred.

I'm concerned about your calf muscle tightness and swelling. Those are classic symptoms of blood clots, which we are 23% more likely to develop than non-Weggies. Did your doc rule out clots using ultrasound? The predisposition to clots is well-known with certain AI's, but not with Wegs. Unless he's a Wegs specialist it's unlikely that he'd know about it. Ask if he's familiar with the "WeCLOT" Study. If he hasn't ruled them out using ultrasound, this is a call you need to make first thing Monday morning.

Hugs to you in the meantime.

[Dumpy]

Sangye I saw my Doc last week but at the time I didn't have the swelling in the calf muscle until about the first of this week. Then my ankle had some swelling just yesterday morning. I will call my doc in the moning and let him know so while they are running test they can look at all of it. Thank You for the advise.
You know I always thought I would be ready for my BFF when he decided to visit but it was totally different from the first attack.
The Doc that I have is a really good one. He is the one that the Wegs specialist was really supportive of and he has not hesitated about getting on top of it this time. He has told the nurses what ever it took to get me worked in for the test to do it. Which is really good when it is right on top of Christmas. A lot of Docs will let you set until after the Holidays.