Just an update on my situation.

**jmmilliorn** · 08-10-2011, 01:07 PM

Originally Posted by Chris G

So, Mike - what are they going to do about your jaw? Did I read it correctly? There's a wg calcification causing your jaw problem?

I think it was just an internal bruise from the dentist's shots. I'm on Coumadin.

**jmmilliorn** · 08-10-2011, 01:10 PM

Thanks, Aunnie. I am still weak and SOB, but based on what you've said, I will ask my cardiologist. Seeing him next week. I passed my nuclear stress test and the other tests, like you did. I thought when I got off the pred, I'd do better, but not yet. I'm down to 5mg/day.

Originally Posted by Aunnie

Hi J.Mike,

I haven't been on this chat for a long while,but I found your story interesting.
I'll try to give my Weg story(Readera Digest )version.
Dx'd in 2007,Prenisone since then,can't get below 7mg after many tries.I've tried Methotrexate,Cytoxan,Imuran,Cellcept and haven't been able to get into remission .I started RTX last Sept 2010,2 infusions each time.Again in March and am due again in Sept.I felt last fall that RTX helped(I have 80 mg pred. while being infused).
Since being Dx'd in 2007 I've always had SOB,I went to aPulmonary Spec and had all the breathing tests,all normal.
This spring I had major stomach surgery(Nissen Fundaplication and hiatal hernia repair).Soon after surgery I had SOB badly,my standing heartrate was 140.Readmitted and started on Atenolol,after many heart tests,all normal,AND the bottom line is the SOB(shortness of breath) IS caused by WEG or Granulomatosis Polyangitis.
I take 50 mg Atenolol daily and I can walk up stairs and not feel winded,yes it's another drug and another DR(Cardiologist)but it feels good not to be SOB most of the time.

Good luck to you and your WEG symptoms and I hope RTX helps you more.

Regards,Aunnie

**norcalian** · 08-10-2011, 01:47 PM

Can you still feel the effects of pred at 5mg a day? I hear that some of the less desirable side-effects (moon-face) wears off once you hit 10-15mg/d. I wonder about the other effects...

**jmmilliorn** · 08-10-2011, 02:07 PM

I'm not sure. I'm definitely feeling the effects of cutting back. I run out of gas during the afternoon. I take mine at breakfast. I haven't lost any weight yet, but several people said my face looks thinner. I gained about 40 lbs. during the last year. Don't have my strength back, though I am anemic. As usual, it is hard to tell what causes what. Is it meds, WG, pred., or something else? All of the above maybe.

Originally Posted by norcalian

Can you still feel the effects of pred at 5mg a day? I hear that some of the less desirable side-effects (moon-face) wears off once you hit 10-15mg/d. I wonder about the other effects...

**vdub** · 08-10-2011, 04:04 PM

Is it meds, WG, pred., or something else? All of the above maybe.

Isn't that the truth?! Basically sucks.... I guess I should update my remission thread, but I'll wait a bit while I step down another notch with the mtx. Like you, I run out of energy about halfway through the day. The other really odd thing that happens is around 1500 or so, I feel really rotten. Low energy, indegestion, dizziness, sometimes a headache. I feel much better by 1700 whether I eat or not. The only thing I can think of is my regular dose of cortisone at 1400. More research is needed.....

**jmmilliorn** · 08-10-2011, 11:31 PM

Very interesting. And it is so hard to pin down cause and effect.

Originally Posted by vdub

Isn't that the truth?! Basically sucks.... I guess I should update my remission thread, but I'll wait a bit while I step down another notch with the mtx. Like you, I run out of energy about halfway through the day. The other really odd thing that happens is around 1500 or so, I feel really rotten. Low energy, indegestion, dizziness, sometimes a headache. I feel much better by 1700 whether I eat or not. The only thing I can think of is my regular dose of cortisone at 1400. More research is needed.....

**Rose Cozzette** · 08-12-2011, 02:21 AM

Originally Posted by jmmilliorn

Well it took a month of physical therapy, but I finally got the jaw unlocked and back to normal. Unfortunately, I still have more dental work to have done, and I'm afraid it will happen again. The doctor that I went to see about the muscle trismus said that because I'm on coumadin for the blood clot in the leg, the jaw muscle probably got a big bruise from the shots the dentist gave me. My arms bruise during the night sometime and I'm not that rough a sleeper.

so glad the jaw problem is relieved. when I was having dental work done I told the dentist I am paranoid abt the work and to please stop often and bear with me, he did and it helped a lot. I told him how I cant tolerate pain very well now and he accomodated me. worth a try.

**Rose Cozzette** · 08-12-2011, 02:26 AM

Originally Posted by Aunnie

Hi J.Mike,

I haven't been on this chat for a long while,but I found your story interesting.
I'll try to give my Weg story(Readera Digest )version.
Dx'd in 2007,Prenisone since then,can't get below 7mg after many tries.I've tried Methotrexate,Cytoxan,Imuran,Cellcept and haven't been able to get into remission .I started RTX last Sept 2010,2 infusions each time.Again in March and am due again in Sept.I felt last fall that RTX helped(I have 80 mg pred. while being infused).
Since being Dx'd in 2007 I've always had SOB,I went to aPulmonary Spec and had all the breathing tests,all normal.
This spring I had major stomach surgery(Nissen Fundaplication and hiatal hernia repair).Soon after surgery I had SOB badly,my standing heartrate was 140.Readmitted and started on Atenolol,after many heart tests,all normal,AND the bottom line is the SOB(shortness of breath) IS caused by WEG or Granulomatosis Polyangitis.
I take 50 mg Atenolol daily and I can walk up stairs and not feel winded,yes it's another drug and another DR(Cardiologist)but it feels good not to be SOB most of the time.

Good luck to you and your WEG symptoms and I hope RTX helps you more.

Regards,Aunnie

I had not heard of the SOB being treated, what does the Atenolol actually do? my BP goes right up with any exertion and of course SOB.