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Havellen
10-29-2014, 09:55 AM
Hi!
I have now had Wegeners for 1 year and 3 months, and I have some questions.

I started my medication when I got it with Mabthera and methotrexate. I was supposed to take a new round of Mabthera, but because of a cold I had some low values of lgG, so the doctor postponed the mabthera to after the summer. I went to the doctor around 9th October to get my checkup to take the Mabthera, but because of some partying around the start of the semester (Something called Fadderuke in Norway) I again had some low values of lgG. The doctor said I should wait a month and take new tests, so I did. The lgG values were good on this test, but when i went to the doctor, I had a new one. I go to the hospital, so it is kinda random which doctor I get. The new doctor said I didn't need the mabthera, but because I have some scarring in my nose (I might say this wrong, I don't know what it directly translates to in english) and some eczema on my hands my doctor said I should up my dosage of methotrexate, from 20 mg to 25 mg to not increase my dosage of steroids. I am on 7.5mg of steroids a day now, and the doctor doesn't want to increase it. She also said I shouldn't take methotrexate, but use Metex-injections instead.

So my questions is:
Is the doctor right for setting me up on injections instead of methotrexate?
Why did she say I shouldn't take the Mabthera?

To clarify, I don't have a flare up, but my nose and eczema has always been this bad.

mrtmeo
10-29-2014, 11:31 AM
I am wondering why your Dr didn't offer IV Ig since yours are low, but I don't know what the protocols are for this.
I have only seen in the clinical studies that many received IV Ig before doing the treatments in the study.

drz
10-29-2014, 07:25 PM
I would ask for an explanation of why for each recommendation. Different doctors may have different recommendations for how to treat a problem. But they may also assess your problem differently even if they are seeing you at the same time. But when you have different time periods it will be hard to know if the recommendations are based upon actual change in your condition or just different views on how to treat a condition. It would also help if you can find one doctor who will over see all your care and discuss your concerns and answer your questions. is this possible for you.

There was another girl on here from Norway your age who might be able to also offer some advice about treatment options in your area.
Welkommen to our forum.

vdub
10-30-2014, 09:47 AM
I'm not sure its any solace to you, but the dosages are consistent with what I have had. Just a wee bit higher than what I'm on now.

Jayne 14
10-30-2014, 10:18 AM
Welcome to the forum
I've no experience of the injections , but am on 20 mg MTX weekly & 10 mg steroids : tapered down from 40 over the last few months at 2-5 a time
This is the place to get answers . Good luck & keep us posted x


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Wegetarian
10-30-2014, 11:19 PM
Someone told me that over 20mg / week would be rough on the stomach and hence they might recommend injections instead, I think it also had some other benefit - like less nausea or something. But I don't really know anything for certain. When I was on MTX I was using 25mg/week in tablet form and they didn't seem to have anything against me using the pills, no one even mentioned the injection to me.

pwc51
11-02-2014, 08:59 PM
Seems similar to me. I was on 25mg oral MTX but they made me feel pretty sick (never actually sick though). This was changed to 20mg injected - better, but far from perfect! My rheumatologist has been keen for me to drop prednisolone - I have been off for a year now although at times I feel it is marginal as to whether I can stay in this state or need a few mg for a more comfortable existence!