Next Drug?

[Cindy M]

I was diagnosed in Jan09 and I have tried a few different drugs but have had no great response to them. I started with Methotrexate - it didn't work, now I am on Methatrexate 150 mg a day. I had 2 IV treatments of Rituxan on Aug 6/09 and Aug 20/09 and have seen no improvement. The only thing that seems to keep this disease somewhat manageable is predisone. I am down to 40 mg a day but I am really noticing an increase in symptoms. When I was on a high dose of preds I would see my ENT every month to month and a half and now because of the increase of sinus problems I have to see him in 2 weeks. I am also experiencing alot more pain with the sinus's. I was really hoping that rituxan would be the answer but it does not seem to be. My Rhuemy said that my WG is the thicker more clustered type of the disease which is harder to treat. Has anyone else heard this same thing.

[Jack]

Have they tried you on Cyclophosphamide? It was the original treatment for Wegener's together with Prednisolone and was the combination that had an immediate effect on my symptoms. I know that a lot of people get scared at the thought of some of its potential side effects, but Wegener's can kill you too!

[Sangye]

I agree with Jack. The fact that your Wegs can only be contained by remaining on high doses of pred typically indicates the main engine drug isn't strong enough (eg mtx) or isn't the right one for you (eg Rtx). Sounds like you probably need to give ctx a try. You can't stay on high dose pred for this long. It's extremely damaging and is not sufficient to contain Wegs.

I don't know about your rheumy's statement about the clustered type. It does seem quite plausible, though. Different types of involvement do respond better to one drug or another. Wegs with more "vasculitis" respond better to rituxan than Wegs with more "granulomas". Both are present in Weggies, but some tend to have more inflammation vs more tissue destruction.

[elephant]

Hi Cindy M, the prednisone won't keep it under control. I have severe sinus involvement and still see a ENT every eight weeks, because of damage. Even when I was on 40 prednisone like you, I still had sinus involvement. Like Jack stated, you might need Cytoxan. Many of us on this forum have to try different drugs to find the right one to get WG in control.
It sounds like your WG is very active. Increase pain and seeing your ENT every two weeks is a sign you need something else quick before it attacks your lungs or kidney or any other organ. Hang in there, and be persistent. Hope you feel well soon.

[Cindy M]

I had an appointment with a different Rheumy today, I also saw him in February (mine has been away since Jan and will be back in April). Didn't get the greatest news but then again with the way I have been feeling I wasn't expecting good news. In Feb my CRP went up to 12.1 from 8.9 and today it was down to 9.2. My ESR in Feb was the same as Jan at 22 but today it was up to 25. I still don't quite now what all this means. They also found traces of blood in my urine so I had to go for another urine and blood test. The next drug they are looking at me trying is Remicade which I would take along side with methotrexate. I had been on Methotrexate at the beginning, 1st with pills and then we tried injections but they didn't work. Has anyone tried Remicade? It is a Biologics which is a new class of DMARD. My preds has also been increased from 40 mg to 60 mg a day. I just can't seem to get below that 40mg.

[pberggren1]

Remicade is the same as Rituximab isn't it?

[Cindy M]

Not as far as I know. The information I have is that it is a Biologics which has 3 different types of drugs that are currently being used. They are: Infliximab (Remicade), Etanercept (Enbrel) and Adalumimab (Humira). As with other drugs there are side effects. I will have to go for a TB test, chest x-ray and viral hepatitis screen prior to starting.

[renidrag]

Cytoxin is the answer along with prednisone. I started at 80 mgs pred and am still on Cytoxin although I hope to be off this month. Usually a six or seven month ordeal according to most at this forum.

[renidrag]

oops. I should have reread previous more carefully. Cytoxin is a six or seven month ordeal usually. Prednisone can go on for a long time, although at lower doses. Both are usually prescribed at diagnosis.

[elephant]

Cindy if it is the RTX IV infusion, that is a good drug for WG. If you have to continue to up your prednisone that means the other immunosuppressive drugs are not working to keep your Wegeners in control. The Rheumatologist that I see is a Wegeners specialist at the Cleveland Clinic in Ohio and they are the ones who know what drugs are more powerful to keep WG in control.
My lab values don't move that much, so I would not get to concerned. Your lab values did not move much. They go by how your feel, Chest x-rays, urine test to check kidney....ect
Hang in there Cindy.