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Thread: Older Wegener's patients

  1. #11
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    Pete -- What dose of Septra do you take. I believe my mom is taking the 400/80 Septra (Bactrim) 3 x weekly. She is on 10 mg. of prednisone at the moment, although they want to taper down to less -- like, to maybe 5 in time. If I may ask, did you do the cyclophosphamide-prednisone treatment or Rituximab initially after diagnosis, and have you had to use other maintenance drugs, or did the Septra work all this time on its own? I was looking at a study called TAPIR in which low dose prednisone was used for maintenance and it mentions using cotrimoxazole (Septra - or Bactrim). I've also read a couple of abstracts about just Septra being using as a maintenance drug in European studies. Anyhow, I'll be speaking with the doctor about this today as I just don't think Imuran is going to work for my mom. Thanks for your reply, Pete!

  2. #12
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    The reason for RTX not being suggested could have to do with its extreme expense and whether insurance would cover it. But it seems like people who are deemed to need it are managing to get it, especially if other things have been tried and found problematical. The company that makes it, Genentech, does have a program for helping people with the copays or the overal expense, possibly even donating the drug. I have only looked into it briefly in case I need it some day.

    I have also heard of Bactrim/Septra being considered effective in maintenance of remission because it fights certain bacteria that may trigger flares, or maybe there's more to it that I don't know. But most people use it specifically as Pete described above, to prevent certain lung infections that we are more susceptible to while immunosuppressed.

    I would ask your mom's doctor about RTX and some of your other concerns, such as the enzyme test for Imuran. It is possible that you are not working with the most experienced doc in WG, although if he is a nephrologist, that is very important, considering her kidney issues. Most people have a rheumatologist overseeing their care, preferably one experienced in WG, Then they have the pulmonologists, ENT docs, opthhalmologists, etc, on board as members of the team. Though I've heard of cases with kidney involvement of the nephrologist being the main doc. If you will tell us the area you live in, we might be able to suggest a doc or vasculitis center such as the one at Cleveland Clinic, where Pete, above, goes. People at some distance from these places may go there twice a year or so while continuing to see their local docs, and thus being in touch with the true experts. The Vasculitis Foundation website can help with names of recommended specialists and clinics, and you may be able to arrange free consultations between your doc and some of those experts. Good luck!
    Last edited by annekat; 11-30-2016 at 01:52 AM.
    Anne, dx'ed April 2011

  3. #13
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    Hi Bev,

    I'm taking bactrim DS (800/160). I weigh about 175 lbs.

    At disease onset and for about 16 months following, I took oral cytoxan (50 mg @ 3x/day). I was briefly switched to Immuran, but had a horrible reaction to it, so back onto ctx. Shortly after the Immuran episode, I found this forum, and I decided to go to Cleveland Clinic for evaluation and treatment. At CC, Dr Villa Forte immediately took me off ctx. After a two-week break, I started mtx. My dosages ranged between 15-25 mg/wk. I started on pred at dx with 60 mg/day. Other than a voracious appetite and resultant weight gain, I had no problems with pred. I eventually tapered off pred, and was off it for about 4 months before I started having symptoms. Dr VF then prescribed four infusions of rtx (stayed on mtx), and that knocked down what was a small flare.

    I was on mtx until August 2015. I had another four infusions of rtx and discontinued mtx because the fatigue I was getting from it was starting to interfere with my active lifestyle. I just had a single dose of rtx last month. My current wegs meds are 5 mg/day of pred and bactrim DS 3x/wk. I could probably go a little lower on pred, but it's easier to count out one pill a day instead of 3-4.

    At disease onset, I had ear, sinus, and lung involvement. My other symptoms included a cough with a little blood and night sweats. With treatment, all the issues resolved although I do wear hearing aids (wegs added to the hearing losses from military service and loud work environments). The 2013 mini flare did cause a little kidney damage, but nothing too serious.

    My other meds include norvasc and flomax for hypertension and urinary symptoms. I also take caltrate since pred has caused osteopenia. I also take Claritin and Phenylephrine to avoid sinus congestion.

    Hope this helps, otherwise, just continue asking questions...
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Hi Anne,

    We're in Ottawa, Ontario and the RTX would be covered by the health care system up here. They pay for anything like that. RTX was mentioned, but for some reason, the treatment plan ended up being cyclophosphamide instead. There is actually a CANVASC team here in Ottawa -- and I'm going to try to have treatment switched to that -- Dr. Milman is the head of it. One of my relatives has some serious form of vasculitis and was treated by Dr. Milman and did well. Dr. McCormick was on the team that initially diagnosed my mom (He is also on the Canvasc team for this region). I am hoping to connect with him again now that it looks like the Imuran is just doing harm. I will pursue all of this in the coming days if possible. Thanks for your input and encouragement.

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    Hi Pete,

    Thanks for all of the treatment information. It sounds like my mother and you share some of the same symptoms. Unfortunately, we did not realize she was as ill as she was and her kidney damage was brief but serious. I don't know if she will have a return to kidney function, but since getting off the cyclophosphamide, her numbers seem to be improving and her kidney function may be returning. I'm going to try to talk to her doctor this afternoon and will see where it all goes. I think my mom has just been given the "usual" treatment plan, but as in your case, I think the Imuran is actually doing something pretty awful. Will try to update as we go. Thanks once again for the detailed reply.

  6. #16
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    Oops, I think you mentioned before you were in Ontario. That's great news for the likelihood of her getting RTX. They may have started with CTX because it often seems to work a little faster than RTX, or I should say, the results are noticeable more quickly. Everyone is different, some respond quickly to RTX, others, it can take weeks or months to feel better. Some docs will give CTX and then quickly switch to RTX, even giving both at the same time. The protocols seem to be all over the map, as it has only been widely used for WG for 5-6 years, that I know of, and docs are still learning different approaches. For most on here who've used it (not me), it has gotten great reviews. Sounds like your plan is firmly in place and you know what to do. Let us know how things go.
    Anne, dx'ed April 2011

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