recently diagnosed and cannot find answers

[Pete]

Fwiw, here is my treatment regimen since dx:

Immunosuppressants:
1/11-7/12: cyclophosphamide 150 mg/day (was on it about a year too long)
7/12-8/15: methotrexate 15-25 mg/wk
10/13: rituxin 4 x 750 mg infusions a week apart
8/15: rituxin 2 x 1 gram infusions a week apart

Anti-inflammatory:
1/11-10/12: prednisone 60 mg/day
10/12-8/13: taper prednisone to zero
10/13-1/14: prednisone 60 mg/day
1/14-4/14: taper prednisone to 3 mg/day. Began having symptoms.
4/14-present: prednisone 5 mg/day

Antibiotic:
1/11-present: Bactrim DS on M-W-F

I am in remission. I am also going to have a 1 gram infusion of rituxin in August for maintenance.

[annekat]

Kelly, if you are new to sustained high doses of pred, it is understandable that the side effects might bother you. But it will be tapered and these effects will become less. Weight gain is temporary for many or most people, as is the puffy face. Bone loss happens gradually over a period of time, and by sticking with the pred regimen, the benefits may improve you enough that you can get to a much lower dose or get off it completely, and avoid significant bone loss. At the lower doses, many of us feel much better with pred than without it, and if joint pains are creeping in, or signs of flaring, such as night sweats, we make need to increase the dose a little. As others say above, you are really better off in the long run with the pred that is prescribed than without it. And I agree you should be seeing the best WG specialist you can, there are some listed on the Vasculitis Foundation Website who may consult with your doc for free if you can't travel to see them, or who may recommend a doc near your home. Good luck, and keep us posted!

[CT01]

I would seek out a doctor who is familiar with WG I was treated by my first doctor for 18 months without much improvement. I then changed doctors and have a WG specialist I did rituximab for 2 years and prednisone. I had my last prednisone and rituximab April 15 and don't take any WG drugs now. The vasculitis foundation has a list of doctors that are specialist with our disorder. Best wishes for you!!

Hi blu4runner, I have joined this forum to research on Wegener's to help a friend. A very dear friend of mine has been diagnosed with WG 5 months ago & has not come into remission yet. He is in the stage where doctors are tapering down the medicine. I would like to help him with attain better quality of daily life. My friend is suffering from daily headaches..I believe this is side effect of Prednisone. Did you suffer from headaches during WG treatment? Could yo suggest me how best would it be to reduce these headaches, any essential oils or any thing that might help...I will be very thankful for your help.Thanks a lot...CT01

[blu4runner]

I was fortunate and did not have headaches as a symptom for me Sorry not sure what would be best for it

[Pete]

Hi CT,

Just curious about your friend's drug taper(s). Prednisone should be tapered very gradually once belle about 30 mg/day. I tapered at 5 mg every two weeks down to 20. From 20, I dropped 2.5 mg every two weeks until I got to 10. From 10, I dropped 1mg every two weeks down to zero.

Your friend may want to return to the lowest dose where there were no symptoms and then resume the pred taper again at a slower rate. This should be done after a consultation with the doctor. The consultation should include how your friend has felt since last visit, symptoms and intensity, questions regarding new meds and likely side effects, and what do if there's no improvement (or a relapse).

A taper on other meds might be ok if labs show improvement. This is definitely a conversation for the doctor.

[CT01]

Hi CT,

Just curious about your friend's drug taper(s). Prednisone should be tapered very gradually once belle about 30 mg/day. I tapered at 5 mg every two weeks down to 20. From 20, I dropped 2.5 mg every two weeks until I got to 10. From 10, I dropped 1mg every two weeks down to zero.

Your friend may want to return to the lowest dose where there were no symptoms and then resume the pred taper again at a slower rate. This should be done after a consultation with the doctor. The consultation should include how your friend has felt since last visit, symptoms and intensity, questions regarding new meds and likely side effects, and what do if there's no improvement (or a relapse).

A taper on other meds might be ok if labs show improvement. This is definitely a conversation for the doctor.

Hello Pete,

Thankyou for sharing ho you had tapered down the medicine. This helps to get a perspective on the taper phase. My friend is in taper down phase in consultation with his doctors.

I want to support him through my research on WG....He might be looking at it only through what his doctors tell him (who actually cannot say anything with certainty) or what he reads off google, which says 60% cases relapse within 2-5 years. Please help me find some remedy for his headaches. As you have suggested in separate post I will try to ask him if any Doctors mentioned n Vasculitis Foundation is on board with his treatment.