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Yes, thank you. Hoping his pain issues are much better. We'll see, so far he's responding to the neuropathy meds, Gralise. There are ups and downs with this disease, everyday is different. His last...

Hello Allisonquast~
I'm sorry to hear that. It's been quite a roller coaster ride for us. We were lucky to get a quick diagnosis, but unfortunately there aren't a lot of Specialist's that deal with...

I'm so sorry to hear you're not feeling well, Alysia. My hubby, Steve has been battling aches, stiffness, & fevers lately. I appreciated your kind words of encouragement, and well wishes for my...

Steve doesn't drink alcohol, he's never acquired a taste for it. He actually hates alcoholic beverages. Back when he was in his mid 20's, he went on Accutane for acne. He had to get his liver enzymes...

Dealing with this Rheumatoid Specialist is frustrating! I find that I argue & I'm skeptical with her observations & responses back to my hubby when he tells her his symptoms. Again, her reply is,...

Just wondering what to look for when viewing your labs to see if your meds are working? We've only had 2 appointments with our Rheumy Specialist, but have had more labs run done in the last two weeks...

Well, it's looking like each one of you have struggled with aches & joint pain. Steve decided NOT to take his 60 mg of prednisone in the morning. He decided to take it later in the afternoon. What a...

Ok, I'll tell him to hold on for a bit, while the meds kick in. At least our Rheumy told us it takes 4-6 weeks before you see the effects of the immunosuppressant drugs. We didn't realize that...

Here's the link:

Digestaqure | Addressing the Root-Cause of Autoimmunity

I just read about it online, and a friend had suggested it for my husband. It's supposed to be an all natural pill...

Hi,
Just wondering if anyone is experiencing a lot of pain in their legs & arms? He has trouble walking, because it's so painful. My hubby is newly diagnosed with Weg's as of mid-September 2013....

I appreciate all your advice, Anne. :biggrin1: Yep...that's the hubs, Steve. The background is Leavenworth, WA last Fall. such a beautiful place to visit.

Thanks for your response, drz. Steve has a referral to an endocrine specialist & we have a month & half wait. :thumbdn:
Steve's neuropathy is horrible in both feet! He is going to see a neurologist...

Thanks so much, Anne. I'm still learning on how to navigate this forum. I'll figure it out soon, and message vdub to find out what Dr's are treating him. I think he mentioned it in an earlier post....

Thanks, it's definitely something to look into. We are unsure about our Rheumatoid specialist here as far as trusting her for Steve's care. We were just in her office the day before I took Steve to...

Hello friends,
Thank you for your well wishes & concerns. So sorry for not updating sooner, it's been a whirlwind of events. Steve was discharged from the hospital this weekend with another...

No, our specialist hasn't consulted with anyone from the Cleveland Clinic. I will call the clinic directly to get in to an appointment. Right now, I'm in the ER with Steve. I had to rush him here,...

Yes, I agree Anne. We need to get in ASAP with the Cleveland Clinic! Things are progressing in the wrong way with him, he's having other issues right now. I'll keep you posted.

Thanks for your comments and info on the Doctors that know how to treat this disease. I have read quite a bit on Dr Gary Hoffman. We would love to have him be our Dr. I'm not sure how the National...

Hello Anne,
I see you live in Olympia....Liberty Lake is right along the Idaho border. We are only 10 mins away from Coeur D'Alene, ID & 5 mins away from Spokane. I'm happy to meet you! I tried to...

Thank you, Don. Before I registered for this forum, I would look through all the posts looking for answers. My hubby, Steve is reading these posts & feeling more hopeful with managing this disease. I...

Thank you, I'm happy to be a part of this group & learn more. Your wife is very lucky! Glad all is well.

Such great information! Thank you for your time, Rebekah. You're helping so many of us & sharing valuable information. Stay well...<3

Hello from Washington State! My hubby, Steve was recently diagnosed with Wegener's in September 2013. This is all new and scary! We are facing this journey together, I found this support group, and...