Just an update on my situation.

**jmmilliorn** · 07-06-2011, 08:26 AM

It is now several weeks since both my RTX infusions, and I feel much better. The MTX was really making me sick, but I just thought it was the WG making me feel bad. I wake up most mornings amazed that I feel so good. Everyone says I look well to them. I still feel a little shaky sometimes, but overall I feel pretty good. But, I am still carrying around the 40 lbs of excess weight the prednisone put on me. Mostly in the belly, neck and face, too. I regret that I gave into my hunger so easily with all those carbs. My Pred dose is down from 60mg to only 10 mg per day and I am supposed to start taking Azathioprine tablets soon I'm told. I look forward to getting off the steroids of course. Seeing my WG doc at the Cleveland Clinic in August.

I am still very weak and short of breath if I exert myself more than a minute or two. Can't work on the ranch yet. Even carrying in groceries or climbing a few stairs tires me out, and the blood clot in the right leg (courtesy of WG) makes getting up and down more difficult. Just had the old leg scanned. The clot is a little better, but the doc says it has probably turned to "concrete" and I'll be living with a fat leg, compression socks and blood thinner the rest of my life. Still on Coumadin. I do think I am getting a little stronger each week, but the progress is much slower than I expected or hoped. But, progress is progress. I want to start walking for exercise, but it has been over 100F in Texas every day for a month. Even at 10PM it is still near 100F.

I am having a CT scan of my lungs in July to see if the nodule they found in April is bigger or smaller. I hope it is gone since I am feeling so good now.

After a recent trip to the dentist to have a tooth capped, I developed Muscle Trismus (lock jaw). In researching it, I saw that it is one of the many symptoms of vasculitis. Now I'm wondering if I got it from the five shots of anesthetic in the jaw muscle or not. Coincidence? Hmmm. Still can barely get one finger in my mouth after two weeks of muscle relaxers and rubber appliances between the teeth.

I thought I'd share all this just in case someone wants to comment or in case someone else is experiencing similar symptoms and wondering if they are the only ones. I do that all the time.

Best regards to all you fellow Weggies.

**Sangye** · 07-06-2011, 08:51 AM

Thanks for the update, Mike. I've been wondering how you were doing these days. It sounds like things are moving along. With Wegs, even if they're improving very slowly it's better than the big setbacks.

Before I was dx'ed, I had the severe migratory joint pain for a year. Every so often it would affect my jaw. I could barely open my mouth--a finger's width, like you said. More than that caused severe 10 out of 10 jaw pain. It usually only lasted 24 hrs or so.

I sure wish I hadn't gained all the weight, either. I didn't know pred caused weight gain in the beginning. It's hard to convince people who are on the high doses that they'll be really sorry when it comes time to try and get the weight off. We all assume we'll be in good physical shape to do it, but that isn't always the case.

**Psyborg** · 07-06-2011, 08:52 AM

Glad you are feeling better JM

I hope the jaw starts to feel better soon. I know I've developed tooth grinding recently myself, I can't keep the mouth guard in all night. I wake up and just want it out in the middle of the night. I can't imagine lock jaw...that's gotta be rough.

**jmmilliorn** · 07-06-2011, 08:54 AM

Thanks for the reply. I'm on week two of the lock jaw.

**jmmilliorn** · 07-06-2011, 09:14 AM

I think I clench at night. I wake up sometimes with sore jaw muscles.

**elephant** · 07-06-2011, 09:16 AM

Glad your getting better. Never had a problem with my jaw.

**pberggren1** · 07-06-2011, 09:42 AM

I am sorry to hear about the lock jaw Mike.

But I am glad to hear about your increased energy and overall feeling better. I hope you guys can get some good rain soon and the temps will lower a bit. Walking is good. I try to do it every day but with the heat and mosquitios and of course the SOB I don't get very far or fast.

**jmmilliorn** · 07-06-2011, 09:47 AM

Originally Posted by pberggren1

I am sorry to hear about the lock jaw Mike.

But I am glad to hear about your increased energy and overall feeling better. I hope you guys can get some good rain soon and the temps will lower a bit. Walking is good. I try to do it every day but with the heat and mosquitios and of course the SOB I don't get very far or fast.

Can you see any improvement since your RTX infusions Phil?

**pberggren1** · 07-06-2011, 09:50 AM

I honestly can't see any improvement yet. I have my last of 4 infusions this Thursday on July 7, my birthday. I think once August rolls around I should start to feel better. I think the high dose pulse steroids make me feel crappy as well for a week after the infusions. I will be starting back on the AZA as well on July 14. It sounds like we are almost in the same boat. I have only gained about 15 pounds this go around on pred.