View Full Version : What is "typical" for meds?

03-08-2011, 12:40 PM
Today I hit the "reset button" on my care, gathered all my medical reports and drove over an hour to my GP that I used to see years ago. He listened to the big picture and is going to get me the appointment at JH that I am looking for. He expressed concern about the prednisone dose I am taking (30 mg). He didn't change anything, of course, but was curious about why I wasn't started on Imuran or something like that instead of prednisone. He had no idea, but we were both left wondering what starting point I might be looking at. I know it's hard to have any kind of typical with such a complex and diverse disease.

and thank you for all the advice and help y'all have given me!

03-08-2011, 03:40 PM
SO glad you took matters into your own hands! :thumbsup:

03-08-2011, 09:56 PM
Imuran is not used in place of Prednisolone, but in conjunction to it. You need to be well and truly in sustained remission before you can stop taking Pred and if you are currently on 30mg you have quite a way to go yet. It is the tapering off from medication that requires the most judgement and experience in the treatment of Wegs. In general, it is not too difficult to knock it on the head with high drug doses, but of course this is not a sustainable condition. (and then there are the unlucky ones who experience bad reactions to even moderate drug doses :( )

I would hesitate to state what is typical in terms of drugs and doses because the individual's requirements vary so widely. However, if pressed I would say that the "standard" treatment starts with ctx and 60 mg of Pred. This is tapered out into a change to Imuran with less than 20mg of Pred. In turn this can then perhaps change to something like Mycophenolate with less than 10mg of Pred. The final step might be to get off these drugs altogether, but perhaps continue with Bactrim only. In addition to the main drugs, there is also a need for others to control blood pressure, protect the stomach etc.

Everyone will have a different picture of what is normal depending on their own experience. ;)

03-09-2011, 02:19 AM
And depending on how sick you are at presentation, it is possible to not start on ctx at all, but rather mtx, cellcept or imuran in conjunction with (or in my case, instead of, pred).

I think that medication really needs to be finely calibrated to the patients needs. There were some here that were dubious of the fact that I was not started on pred at dx, but rather, only the immuno (in my case 17.5 mg mtx). Turned out to be the right call for me, however, and I was able to get into remission within four months, looking at trying at a drug free remission starting next week, assuming my blood levels are still ok.

By the way, if my doc were treating my blood level (P3 still way up there, c-ANCA stubbornly positive) I would be on pred and something stronger. He says that one of the hardest things to do is treat the patient and not the data -- particularly if the practitioner isn't experienced in the disease.