View Full Version : relapse meds

02-07-2009, 02:13 AM
After less than a year off meds, I was borderline and then relapsed. My nephrologist says she was consider low-dose chemo for the rest of my life. Does anyone have any alternatives? I would prefer the low-dose chemo and know I won't have a relapse to no chemo and waiting for the shoe to drop.

02-13-2009, 08:37 AM
Sorry I missed this one Hybrid. Hope you're doing ok.

Low dose chemo would probably take the form of Imuran/Azathioprine. I'm told that I'll be on 125mg of Imuran for the 'forseeable future' which I take to mean the rest of my life. Certainly it would help prevent a relapse but I don't think anything can totally eliminate it.

Anyone else got any ideas?

02-13-2009, 10:31 AM
I used to relapse until I went on to Mycophenolate and Prednisolone. It must be 10 years or more since my last episode. My main medications have not changed for years and I just accept that I will be taking them for the rest of my life.

02-13-2009, 11:58 AM
There are non-chemo drugs like Cellcept (mycophenolate mofetil) and Rituxan. Not 100% sure about Rituxan, but Cellcept works by targeting the B cells (one type of white blood cell involved in immunity) directly. You don't get the overall toxicity like with chemo. Like with anything, people have mixed results and you can get a relapse on any drug, with any dosage.

I've been on Cellcept for about 1-1/2 years (has it already been that long? *sigh*). It's going okay-- not terrific, but no major relapses. My doc wants me to stay on it for the time being.

02-13-2009, 09:20 PM
I tried coming off everything in my late teens but it didn't work. After I was back in remission I stayed on Immuran and Pred for about 10 years without any significant illness before it flared up again and I lost my kidneys. After my transplant I stopped the immuran and went on to Cellcept, Pred and Ciclosporin. After a couple of years I stopped the Cellcept and eventually the disease became active again. Back on Cellcept for 5 years now and it seems, just about, to do the job.

I like Cellcept, but it doesn't suit everybody. Immuran worked well for me for a long time, too, and I seemed to have no side effects on that at all.

02-14-2009, 12:55 PM
I'm on Cellcept only (no pred or cyclosporin). I developed increased intracranial pressure in 2007, and two of the most likely culprits were pred and its accompanying weight gain. I still have the increased pressure-- barely contained by drugs. So given that I'm not on pred and not in remission either, I guess I'm doing okay.

04-20-2009, 12:04 AM
I did not know that prednisone could do that. What is cellcept? I think I am hoping for imuran rather than low-dose chemo for rest of my life. What do you think? Hybrid

04-20-2009, 12:07 AM
I am hoping for imuran rather than low-dose chemo for rest of my life. What is cellcept? I think you are right that the body gets used to a drug and you have to change. I will have to remember that. Did you find that huge, stressful, trauma caused a relapse? Hybrid

04-20-2009, 12:15 AM
I find it hard to read the comments like I lost both my kidneys, etc. That is why I have to be "up" to go to this website. Feeling much more energetic, hoping for at least a borderline anca on Tues. Golf season is upon us and I am going to France in May. Is imuran a kind of chemo? Several people talking about cellcept. If things work out as I hope, I should be in Oz in Dec. I will let you know if I get near Canberra. Never did get there last time. Hoping to go to Perth this time. Thanks for doing all this, Andrew. I have learned to do several new things by using this website. Hybrid

04-20-2009, 12:18 AM
The increased intracranial pressure is pretty rare. (I'm so special) It's linked to pred, because it can happen if you abruptly stop it, without tapering. That wasn't the case with me-- I had been off pred for months when it happened. But once you have it, taking pred will increase it again. Don't add it to your list of worries-- it's very unlikely. I haven't found another Weggie yet with it.

Imuran is chemo. (Chemo drugs : Imuran, Cytoxan, Methotrexate). Cellcept is not chemo. It's an immune-suppressant that works by wiping out the B cells (white blood cells associated with immunity) in the bone marrow. It's the drug you'd take if you had a kidney transplant, to avoid rejecting the kidney. Doesn't do a lot of damage, like chemo.

Imuran and methotrexate are much milder than cytoxan, though.

04-20-2009, 09:50 AM
Sangye when you switched to Cellcept which my doc wants to do next month were you completely off the pred..or were you taking pred while the switch happened?

04-20-2009, 10:05 AM
I was on cytoxan and pred for about 8 months and had just transitioned to mtx, just getting off pred when I got severe pneumonia. Then I got it again. I had a terrible rheumy who had totally botched my care. I was seeing a pulmy who didn't specialize in Wegs, but felt I was okay to be off meds. I wasn't, but who knew? I was so weak and sick, and thought the whole thing was killing me (which it actually was).

As soon as the second pneumonia cleared up, I was hospitalized again with a severe GI problem brought on by the 13 rounds of antibiotics we had done in those 4 months. I developed elevated intracranial pressure and almost died. They couldn't put me back on pred with that.

I didn't get to Mayo Arizona and start Cellcept for another 2-3 months. The Mayo rheumy always wanted me to go back on pred, even though I was getting stronger all the time without it. So I've just been on Cellcept alone. I still have a lot of pain and symptoms that would probably be relieved with pred, but my JHU docs say I don't need it unless the Wegs starts firing up. It's keeping the Wegs nice and stable--not remission, just not flaring.

I don't know if I'm an exception being on Cellcept without pred. I guess everyone is different.

04-20-2009, 05:29 PM
My consultant has specifically warned me against ever coming off pred. He told me, "At some time, someone is going to try to get you off these. Dont do it! In your case you will always need them."
As you say - we're all different, even though diagnosed with the same disease. :confused:

04-21-2009, 12:42 AM
Jack, that's true. Your case and mine are so different. I don't have kidney involvement, but have had a lot of other weirdo complications. Without them, I'd no doubt be in much better shape. At least right now!

Given how long you've been on the pred, it's not likely you could get totally off it, anyway. Not just for Wegs, but your adrenals in general. But you already know all that-- It stinks. It just totally, totally stinks.

04-21-2009, 05:59 AM
It just totally, totally stinks.
Sounds like you need to work on that positive attitude! ;)

(Even though what you say is true :( )

04-21-2009, 07:18 AM
LOL-- I've learned I can have a positive attitude and still acknowledge that something stinks. It's the difference between letting myself feel it vs. getting mired in it.

04-21-2009, 12:21 PM
I was off Prednisone for two months before my primary care doctor (pulmonologist) got the word from the rheumatologist at University Hospital-Denver that I could move over to CellCept from Cytoxan. Of course, all my numbers were starting to stabilize by then (1-1/2 years after treatment started and six months after the rheumatologist had a chance for a one year follow-up in Denver, where I was proclaimed "miraculously well along to remission"- he did a cANCA, UA's, a one hour interview on all aspects of the course of the disease and treatment during the previous year, and was pleased with my progress. "I see no reason for you to return next year so long as you continue to show progress," he told me.) I think the main difference for me was that I never had any infections that forced me back into the hospital. Even with kidney involvement, my progress toward remission was pretty much straight foreward.

04-25-2009, 06:06 AM
Ok..Thanks to all of you...in two weeks I am hoping to make the switch...Funny how I hated drugs and now hear me say "looking forward to the switch...anyway thanks Sangye...I will defnitely know if Cellcept will be the drug of choice!!!!

04-25-2009, 08:00 AM
Funny how I hated drugs and now hear me say "looking forward to the switch.

LOL, I know the feeling. I never even took aspirin before Wegs. When I first got blood clots and had huge swelling in my legs, they put me on Lasix-- a diuretic. I had a major fit about it.

A couple months ago, I had severe leg swelling again. My doc prescribed Lasix, which was fine with me. There was a problem getting the prescription, and by the time I got hold of the doc, the pharmacy was closed until Monday. For those 3 days I had to laugh at how much I'd changed-- now I was upset that I couldn't get the Lasix fast enough! :D

04-25-2009, 08:45 AM
[quote=RCOSSIO;2171]Ok..Funny how I hated drugs and now hear me say "looking forward to the switch...

I have a similar experience. I have always been so afraid of drug and possible drug interaction. The other day I went to my GP and my quote to him was "I used to be afraid of coming to the doc becuase I was afraid of being given more drugs, but give me whatever I need, I don't care anymore!" I have been thinking about that statement alot since I was at the doc last Wed. and find it almost "crazy". How I was so afraid not long ago and now I accept it with no fear at all! HMMMMMM Maybe it's the drugs that make me that way:confused: ;)

04-29-2009, 10:28 PM
Thanks. I am trying to understand all this so I can tell my nephrologist what drug I want. She's a transplant expert, not an WG expert. Hybrid

05-03-2009, 02:02 AM
Lisa I'm with you, I used to suffer headackes without pills now I take whatever I'm given and ask for more (I feel like Oliver)

05-03-2009, 08:10 AM
In the long run, following doctor's instructions is the best thing you can do: his or her evaluation of your progress is based on what you were instructed to do and take. You don't want your doctor changing your medication based on lack of knowledge of how you actually took your pills, for example, if you skipped dosages or over-dosed yourself

Weggieboy’s Blog (http://weggieboy.wordpress.com/)

05-03-2009, 08:20 AM
Congrats on your blog, Doug! I really enjoyed reading it. And I love the header image--toooo funny.

05-03-2009, 11:06 AM
The self-portrait is too revealing, I'm afraid, but I liked it, too. My mother said something to the effect it was one of the better photos she'd seen of me. What? Anyway, I'm glad you liked it, Sangye. It was your blog that inspired me to give it a try. I was surprised how easy it was to do. I don't know how often I'll update it. If I have something to write daily, it'll be a daily thing, but more likely, it'll be a "whenever I feel like it" sort of blog. So far it's been fun!

05-03-2009, 03:12 PM
sangye, what are the symptoms of intercranial pressure. I have had 2 eye episodes where I think this was the problem but lately had a headache for 2 weeks, occasionally I have stabbing pains in my head and sometimes feel giddy. I actually hadn't metioned it to my doc. Carol

05-04-2009, 01:03 AM
Carol, my first symptom was an odd tightness in one upper trapezius muscle (if you shrug your shoulders, it's the large one that extends from the neck to the shoulder joint). I was in the hospital for pneumonia and attributed it to a bad bed. It gradually got worse over 2 days at home, and I began to notice odd vision changes.

When I turned off the lights at night, I'd see little white quarter-moon white discs for a couple moments. Within a day, they became full-moon discs. My eyeballs weres sore--mildly, but not normal for me.

Then I noticed my vision was off-- kind of warped looking, like a funhouse mirror. I saw an opthalmologist who said my optic nerves were swollen (papilledema) and sent me for an MRI.

Papilledema is a result of increased brain pressure, which can be the result of a brain tumor. The brain MRI ruled out a brain tumor, and I wasn't sick (encephalitis) so the only other choice was "pseudotumor cerebri." That means "fake brain tumor." There's nothing in there causing the pressure, but you get the same symptoms as if you had a brain tumor. Fun.

The eye doc had me "wait and see"-- sometimes it goes down on its own. One or two days later, I woke up feeling not right. In about 3 hours I had increasing nausea and headache, then the projectile vomiting started. That's vomiting like you've never experienced-- the skull pressure is so high and building, the body is trying to expel the head. We had to wait until the next day to do a spinal tap (I was on blood thinners), but I was almost blind and nearly died. The spinal tap both relieves the pressure and also lets them test the cerebrospinal fluid for infection.

My vision was crazy for about 6 weeks, and 2 yrs later if I go off the CSF diuretic, the whole thing begins again.

Your eye doc would see papilledema on a simple exam. It'd be good to mention your other symptoms just in case. A brain MRI might be a good idea, even if your eyes are normal.

05-04-2009, 02:20 AM
Something maybe worth mentioning.....When I went to see my eye doctor he was angered with me for not seeing him sooner and telling him about having WG. I really had not given it a thought, so anyone with a diagnosis of WG should maybe see their eye doctor right away.

I was so "green" when first diagnosed, but becuase of all of you, I am getting smarter. Thanks

05-04-2009, 07:43 AM

One of the things we've emphasized over and over on this website is the need to built a patient/doctor relationship where you are the single most important member of the team because you are the one with the most to gain by giving your doctor the most precise description of your condition and you are the only one who benefits directly when your doctor gets your treatment right!

It's tempting sometimes to hide symptoms or ignore doctor orders, but don't! You are dealing with WG. It can maim you. It can kill you. I'm glad Sangye can address the medical specifics with you so you can understand better just how important it is that you talk with your doctor, mentioning anything that might help him/her save your eyesight, for example, or bring it back to a healthy state.

Cindy M
05-06-2009, 05:34 PM
My ENT specialist sent me to see an opthomologist because of eye problems. Because of WG's a mass has created behind my right eye. Some days I have little pain in the eye but it is sensitive to everything; light, dust, over use from computers. I also suffer from double vision in my right eye. If I sleep on my right side it is more swollen and painful the next day. He said that they would consider surgery to remove the mass if it does not disolve with the meds.

I then had an appointment with my optomotrist and he said that because of the mass I have 30% movement from side to side and about 40% movement up and down. This would be the reason for my double vision.

05-07-2009, 12:37 AM
Sounds miserable, Cindy. I hope it dissolves quickly.