Lost in the battle towards remission

[me2]

Some really great suggestions above. I think waiting until June is way to long to wait. It sounds like it is very possible that she is still not getting proper treatment. This disease can progress extremely fast.
If it were me I would do anything possible to get seen immediately - even by an iffy Rheumotolist who would be at least willing to consult with someone from the Vasculitis Foundation list. You need someone who knows this particular disease very well to be advising - if not directly treating her.
I think it is too soon to be patient.

[Jaha]

Wishing your Mother all the best for getting on the correct treatment from a Wegener's Specialist. It is really important to tell the specialist everything about the onset of her illness. That will help them in determining what they will treat her with since she has been on preds and has had dx for a while. Keep advocating along with her, it helps to have someone there with you to listen when you are feeling so poorly.

[annekat]

I agree June is too long to wait. Azathioprine might not help her kidneys like something stronger. If you get a referral, keep calling to check for cancellations, and maybe you can get her in sooner. Meanwhile, her current rheumy could prescribe CTX any time and should know that, and can consult with specialists, too. When she gets a real appointment with a specialist, they can evaluate her progress on that treatment and will know where to go from there.

[Debbie C]

me2 and Anne are right,don't wait till June,that is way too long.She needs to be on the right meds yesterday! Call her dr. INSIST she get in sooner like Anne said he can consult a specialist and prescribe something else.Does she get monthly bloodwork and urine test done,that is very important to know where she stands ?

[annekat]

me2 and Anne are right,don't wait till June,that is way too long.She needs to be on the right meds yesterday! Call her dr. INSIST she get in sooner like Anne said he can consult a specialist and prescribe something else.Does she get monthly bloodwork and urine test done,that is very important to know where she stands ?

Agreed. I'm not an expert and can't be sure that azathioprine won't help, and I don't know whether maybe your mom's age is a factor in hesitating to use a really strong drug like CTX. But if it's a matter of saving her, I don't think there should be any hesitation! My two cents worth.

[drz]

I got CTX in my late 60's. It is toxic drug and can cause lot of bladder infections by knocking down your immune system but this needs to be done to get GPA under control. AZA is then good for maintenance to keep it controlled. She may also need some higher prednisone dosage to try reduce the inflammation and bleeding in the nose and sinuses. A WEG expert should monitor her condition with weekly labs till things get better.

[kaysee]

Hi. I live in Texas, south of Houston. Where are you located?
I really trust my rheumatologist in the NASA area.
I agree with others that methotrexate will not stop the disease. She needs either CTX or rituxan. I think I've read that methotrexate is bad for kidneys. I may be wrong, bot if she has kidney issues she maybe should not be taking that. Ask the rheumy about that.
It sounds like the rheumy does not really know how to treat this disease. Try to find another who is a vasculitis specialist or who will at least consult with a WG specialist.
Private message me if you would like.