Medication...How long?

[Widthofacircle]

I was diagnosed in April 2009. I had serious joint swelling along with kidney, lung, hearing, sinus, sight involvement. Not all of these issues at the same time but over a period of about 18 months.
I have had cyclophosphamide both IV and oral and have been on Pred,50mg tapering down and back up again as issues arose.
For the past 6 months I have been consistently kept on Cellcept, 3000mg a day plus 5mg Pred and Septrin.
I have been reasonably well except for sore eyes and a lot of sneezing and runny nose lately.
I attend a rheumatologist in a Dublin hospital and he has been successful in hetting me from a bad situation to where I am now however due to cutbacks in health services in Ireland I only get to see him every 4-6 months and sometimes I feel like I am just being kept on a maintenance dose of drugs because it is easier to leave well enough alone.
Any experiences or views on this?
Brendan

[Psyborg]

I'm no expert here, but as I understand it they won't attempt to take you off the maintenance drugs until you can get free of prednisone. At least that seems to be the way my doctor does things.

[NicShaf]

I agree with Bob, that was my understanding of maintenance drugs too, you have to be off Pred before you can come off them.

I also thought I read somewhere that Cellecept wasn't used very much anymore, because alternitives like MTX or Imuran are more effective, correct me if I'm wrong...

Have you been on 5mg of Pred for the whole 6 months?

[Widthofacircle]

Hi Nicole.
I have been on 5mg Pred for 6 months plus. I believe a number of people on here are on Cellcept
Brendan

[NicShaf]

You're right, I have seen others on Cellecept, and I know it works for some. I was just wondering if they tried one of the other maintainence options to try and get you off Pred?

[Widthofacircle]

No they have not tried anything other than Cellcept. As I said in an earlier post I think they are happy to leave well enough alone as I am reasonably well however I want to get off all medication if possible.
Brendan

[Al]

In most cases, CellCept is the alternative to Imuran, which is not well tolerated by everyone. Pred is both a triage med, in high doses, and a maintenance drug, at lower doses. We all have a yearning to be off it altogether, but it is just a dream for most of us.

It concerns me, Brendan, that you are seeing the doctor so infrequently. Usually, WG sufferers have monthly, or at worst, bi-monthly monitoring. This disease can go from inactive to full-blown flare very quickly.

Al

[Widthofacircle]

Thank you Al
I too am concerned at the infrequent consultations with the rheumatologist, it is a symptom of our depleting healthcare system here in Ireland due to the recession. I am however, comforted by the fact that I know when I feel I may be in trouble I can draw on the knowledge on this forum, not least yourself Al, and then go armed to the so called experts
Brendan

[Al]

Thank you Al
I too am concerned at the infrequent consultations with the rheumatologist, it is a symptom of our depleting healthcare system here in Ireland due to the recession. I am however, comforted by the fact that I know when I feel I may be in trouble I can draw on the knowledge on this forum, not least yourself Al, and then go armed to the so called experts
Brendan

Just another bit of evidence, Brendan, that politicians and bean counters can get in the way of problem solving, and work against enlightened self-interest.

Al

[Widthofacircle]

Just another bit of evidence, Brendan, that politicians and bean counters can get in the way of problem solving, and work against enlightened self-interest.

Al
You said it Al. Problem solving is what progress is all about.
Brendan

[Dryhill]

In most cases, CellCept is the alternative to Imuran, which is not well tolerated by everyone. Pred is both a triage med, in high doses, and a maintenance drug, at lower doses. We all have a yearning to be off it altogether, but it is just a dream for most of us.

It concerns me, Brendan, that you are seeing the doctor so infrequently. Usually, WG sufferers have monthly, or at worst, bi-monthly monitoring. This disease can go from inactive to full-blown flare very quickly.

Al

I only see my doctor every three months, but I have bi-weekly blood tests which are sent to him and I also have his secretary's telephone number and I have been instructed to use it if there is any slight change to my condition.

Jim

[Widthofacircle]

Jeez Jim. I an worried now. I do not have thyis kind of attention at all

[mishb]

I used to see my specialist every month with blood tests every 3 weeks.

Now my ENT is every 6 months (wont be seeing him until June next year) and my Rhuemy will be every 3 months but still need to have blood tests once a month. Only just saw them both this month.
.......and believe me, they certainly call me in if there is anything strange or out of the ordinary with the blood results.

I would have thought, Brendan, that you, would at least, needed to have blood tests every month, if not for anything else but to test the liver and the kidneys to make sure the meds weren't causing any unwanted reactions/affects. Maybe you should ask your doc next time you see him/her.

[rif]

My son sees specialist every eight weeks with blood tests every six weeks. He has also been on Mycophenalate since dx in April 2009. Pred daily dosage is down to 5mg.

[Sangye]

I agree with Bob, that was my understanding of maintenance drugs too, you have to be off Pred before you can come off them.

I also thought I read somewhere that Cellecept wasn't used very much anymore, because alternitives like MTX or Imuran are more effective, correct me if I'm wrong...


Okay, well neither of those is correct. LOL

Many people need to remain on low-dose pred to keep symptoms at bay-- 10mg or below-- but they don't need to stay on an immunosuppressant.

I asked Dr Seo about Cellcept a few months ago. It's still widely used and is as effective as mtx or imuran.

[Sangye]

It concerns me, Brendan, that you are seeing the doctor so infrequently. Usually, WG sufferers have monthly, or at worst, bi-monthly monitoring. This disease can go from inactive to full-blown flare very quickly.

Al
While it's important to get regular labs (monthly), it's fine to go 3-6 months between appointments if things are stable. I have monthly labs and see Dr Seo every 4 months. I can go in sooner if I need to, but for the most part things remain stable or they can be addressed via email.

If you have new symptoms or troubling ones, it's important to be seen quickly.

[Sangye]

If you're on ctx you need to get labs every 2 weeks to make sure WBCs are going too low (could be a sign of bone marrow failure). If you're on mtx or imuran you need to get labs every 2-4 weeks to keep an eye on liver function. Cellcept doesn't affect the liver like mtx or imuran so there's no reason to get labs more frequently than monthly.

Widthofacircle, given that your case of Wegs is stable and which meds you're on, I don't think being seen every 4-6 months is cause for concern, as long as you can get in sooner if you need to.

[Psyborg]

Okay, well neither of those is correct. LOL

Many people need to remain on low-dose pred to keep symptoms at bay-- 10mg or below-- but they don't need to stay on an immunosuppressant.

I asked Dr Seo about Cellcept a few months ago. It's still widely used and is as effective as mtx or imuran.

I may be incorrect in how I stated that. Dr Villa-Forte doesn't want to discuss going off of Immuran until I'm off of Prednisone. That might not be the same everywhere though :) I'm guessing that assumes I don't hit a wall at some point where I can't go any lower.

[Al]

If you're on ctx you need to get labs every 2 weeks to make sure WBCs are going too low (could be a sign of bone marrow failure). If you're on mtx or imuran you need to get labs every 2-4 weeks to keep an eye on liver function. Cellcept doesn't affect the liver like mtx or imuran so there's no reason to get labs more frequently than monthly.

Widthofacircle, given that your case of Wegs is stable and which meds you're on, I don't think being seen every 4-6 months is cause for concern, as long as you can get in sooner if you need to.

The term I used with Brendan is "monitoring". I do believe that any potentially active case of WG (and that is almost every case) needs regular monitoring (blood tests and, where appropriate, urine tests), regardless of whether one sees the doctor so often or not. As Sangye points out, this is especially important when you are taking immunosuppressive drugs, which can mess up important things, like blood marrow, liver function, adrenal production, and other stuff.

Al

[delorisdoe]

sounds to me like everyone is in agreement here

[Widthofacircle]

Okay, well neither of those is correct. LOL

Many people need to remain on low-dose pred to keep symptoms at bay-- 10mg or below-- but they don't need to stay on an immunosuppressant.

I asked Dr Seo about Cellcept a few months ago. It's still widely used and is as effective as mtx or imuran.
Sangye
I am glad to hear Dr Seo,s comments regarding Cellcept.
I have been on it now for approx 18 months I nthink, I have lost track. I think it is time I came off it but each time I visit the rheumy I feel he does not want to upset the Status Quo
Brendan

[Sangye]

That might be a good plan for now. Dr Seo had me on Cellcept indefinitely since we thought it was working. Turned out I wasn't taking a high enough dose (I needed 3,000 mg and was taking 2,000 mg) and the Wegs was smoldering for 2 years. By the time we figured it out I was in a severe flare and had to go on ctx and then rtx.