Rituxan

[Lily0303]

I was on Rituxan a little over a year ago. I went to the ER the other day, and the rheumatologist the doctor was talking to mentioned that as a long term treatment. My fiancé went online as soon as he heard and from what he found in the studies it's not good. Should I be worried, or just wait it out till I actually talk to the doctors myself?

[Green Grass & High Tides]

I would look up NIH published studies and talk to the doc. I haven't seen any scientific studies invalidating Rituxan. It works for many people. Better for some than others. I charted my symptoms and after a year and 4 infusions we could see it wasn't fully controlling the disease. Cytoxan worked better to control the disease but was brutal on my wegs weakened system.

Best wishes
Tom

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[Lily0303]

Yeah I was on the cytoxan when I was first diagnosed but they had to take me off it too. Was wreaking too much havoc, you could say :biggrin1: the retuxin I had 5 infusions but showing the same signs as my last relapse. It wasn't as hard on me but still showed me down a bit. Been on azathioprine too and that was ok. Just don't want to be getting worried for nothing.

[Birdie]

Should I be worried, or just wait it out till I actually talk to the doctors myself?

Learn all you can before talking to the doctors, so you can ask the most informed questions. I haven't taken it but a bus load of the people who are active here can probably give more combined insight than any one doctor. All I can say is... run away from cytoxin as fast as you can unless there is no other option. It's only a short term act of desperation. Azathioprine is what's working for me, with no detectable side effects. Not sure about long term consequences since it's only been a few years.

[drz]

Many people use RTX as a maintenance drug when nothing else seems effective enough. No one knows much about long term usage effects since it hasn't been used that way very long. Because it is expensive too, it is not very likely to be over used and is only used when it is thought necessary to save ones health. So if the doctors really think you need it, RTX sure beats having Out of Control Wegs raising havoc with your body.

[Alysia]

I am on rtx almost 3 years. Every 6 months or a bit more. I had already 5 IV. Soon number 6. First 2 for active wg, 2000mg. The others 1000mg for maintenance. Mtx didnt work and I couldnt bear Imuran. I am in remission.

[MaxD]

I'm on Rituxan for maintenance, had one infusion about 9 months ago and may have the next one sometime soon. My case is much less severe than yours seems to be, though. Dr Spiera in NYC recommended this treatment for me, and did explain that maintenance therapy is more art than science, requiring a careful balance between overtreatment and undertreatment. Since the long-term (many years out) effects of Rituxan are less well known (but nothing harmful is known) my docs monitor my immunoglobulins and B-cell counts regularly, the first to make sure that I'm not immuno-compromised and the second to eliminate the chances of a relapse. This is the regime for at least the first two years (when relapse rates are very high for those with sinus involvement). Interestingly, relapse rates are significantly less for those with kidney involvement (though the consequences of repeated relapses is worse, over time).

If Rituxan has already worked for you in the past, I don't see an issue with using it again. But it's best to get a consult with a specialist at one of the Vasculitis centers and ask all the questions that worry you. Good luck!

[MikeG-2012]

For me, it's been the best thing that has happened in my wegs treatment. 9 down and #10 this week!

[wegme]

Rituxan is really the best way to go, especially if you have had it before and had no problems. As others have said on here stay away from cytoxin if possible. I think most docs don't prescribe it much now anyway. I took Rituxan in 2012 and it keep my Wegeners under control until this year, so that's not too bad. I just finished another round and now my doc is talking about using it as a maintenance drug to help keep me from falling into flair ups. This sounds good to me since no one mentioned putting me on any maintenance drugs back in 2012 (or 2001 when this started). One last thing to mention is to make sure you have a doc that treated wegeners before, if not, then find one that does, even if you have to travel.

[Lily0303]

Thanks everyone :) am feeling a bit better about all of it. I did have one more question, does anyone know if it's possible to get pregnant after being on all these? Have been on cytoxan, imuran, and retuxin, but me and my fiancé have been wondering about it.

[Green Grass & High Tides]

http://www.ncbi.nlm.nih.gov/pubmed/18364720
Cytoxan info on fertility

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[Birdie]

Thanks everyone :) am feeling a bit better about all of it. I did have one more question, does anyone know if it's possible to get pregnant after being on all these? Have been on cytoxan, imuran, and retuxin, but me and my fiancé have been wondering about it.

I have no input regarding fertility, but it's cool that life is going well enough for you to consider it. :) :) :)

[debra]

Lily, hi. Fertility has been talked about on here, I remember seeing it a few years back. So if u do a search on here. Also I believe Carrie G? Not sure about the g? But she's a member and if u search under her u may get some information... Best of luck to you both!!! Deb.

[Pete]

Found this info regarding fertility and rituximab: Rituximab (Mabthera) | Cancer Research UK (http://www.cancerresearchuk.org/about-cancer/cancers-in-general/treatment/cancer-drugs/rituximab)

Probably not the news you want, but...

[debra]

Lily,hi. I remember I'm pretty sure Carrie C,not G. Dont know how that would effect you're search. Then again,if u just search fertility it would come up,I would imagine... Deb.

[wegme]

I was on Rituxan a little over a year ago. I went to the ER the other day, and the rheumatologist the doctor was talking to mentioned that as a long term treatment. My fiancé went online as soon as he heard and from what he found in the studies it's not good. Should I be worried, or just wait it out till I actually talk to the doctors myself?

Find a rheumatologist that treats people with wegeners. Not all do. I found 3 in a row that had never had a patient before. Finally I found one at a university hospital 2.5 hours away. Don't be afraid to ask them about their experience in treating wegeners. Once you find one, then use them to manage your care. Learn all you can and ask questions. I think it is very likely that you can still be reproductive, it is just a matter of getting the right experts to work on it. So don't despair until you are sure.

[loisann11]

I had pneumonia and was suspected of GPA over 2012 Holiday season. I was officially diagnosed and treated Easter of 2013. I had more problems at Easter and went back to hospital now with kidney involvement and lung issues. At least they could do biopsy to make sure it was GPA. I had Rituxin and all the Prednisone etc. to clear it up. I have been using Rituxin for maintenance every 6 months. It is time again but I just don't know what lab work to look at to know if I need to. With 2 major organs already having been involved I am high risk of having more problems. Most of the time I feel fine for my age, 65 with all the normal aches and pains, so I don't know how to tell what counts anymore as symptoms or just normal. Anyone else with similar story?

[Lily0303]

I had pneumonia and was suspected of GPA over 2012 Holiday season. I was officially diagnosed and treated Easter of 2013. I had more problems at Easter and went back to hospital now with kidney involvement and lung issues. At least they could do biopsy to make sure it was GPA. I had Rituxin and all the Prednisone etc. to clear it up. I have been using Rituxin for maintenance every 6 months. It is time again but I just don't know what lab work to look at to know if I need to. With 2 major organs already having been involved I am high risk of having more problems. Most of the time I feel fine for my age, 65 with all the normal aches and pains, so I don't know how to tell what counts anymore as symptoms or just normal. Anyone else with similar story?

When i am having a flare up usually it starts with rash on my legs that looks kind of like chicken pox, then comes the joint pain and problems breathing. Best way it to have them do a full panel of blood work when diagnosed they shoild have told you where they prefer your white cell count to be. A higher count usually means trouble is brewing. Hope this helps a little :)

[annekat]

Loisann, I don't get rashes on my legs and only a few red spots on my arms. Everyone is a little different. For me, the telltale signs of a flare are night sweats, feverish feeling, increased mucus production, rarely joint pain although I did have it before initial treatment. Lily is right about the WBC count, and also in lab work, you need to look at inflammation markers such as CRP and SED rate, and also creatinine level for your kidneys, and protein or blood in urine. If you can get copies of your lab work, you should, and it will tell you what the normal ranges are. Sometimes symptoms and lab results don't coincide perfectly, and docs sometimes let things slide that are just a little off the norm. If you just recently had problems that sent you to the hospital, my intuition would be to go ahead and get another RTX infusion.

[wegme]

I had pneumonia and was suspected of GPA over 2012 Holiday season. I was officially diagnosed and treated Easter of 2013. I had more problems at Easter and went back to hospital now with kidney involvement and lung issues. At least they could do biopsy to make sure it was GPA. I had Rituxin and all the Prednisone etc. to clear it up. I have been using Rituxin for maintenance every 6 months. It is time again but I just don't know what lab work to look at to know if I need to. With 2 major organs already having been involved I am high risk of having more problems. Most of the time I feel fine for my age, 65 with all the normal aches and pains, so I don't know how to tell what counts anymore as symptoms or just normal. Anyone else with similar story?

Here is my advice, go ahead and have the rituxan treatment every 6 months whether you think you are having symptoms or not. While it is good to look your lab work, the point of maintenance treatments is to keep from having another flare up. Good luck.

[Pete]

I had pneumonia and was suspected of GPA over 2012 Holiday season. I was officially diagnosed and treated Easter of 2013. I had more problems at Easter and went back to hospital now with kidney involvement and lung issues. At least they could do biopsy to make sure it was GPA. I had Rituxin and all the Prednisone etc. to clear it up. I have been using Rituxin for maintenance every 6 months. It is time again but I just don't know what lab work to look at to know if I need to. With 2 major organs already having been involved I am high risk of having more problems. Most of the time I feel fine for my age, 65 with all the normal aches and pains, so I don't know how to tell what counts anymore as symptoms or just normal. Anyone else with similar story?

I have monthly labs done (mainly for my peace of mind): CBC, comprehensive metabolic panel, sedimentation rate, C-reactive protein, and urinalysis. I keep close tabs on my blood cell counts, creatinine serum, and evidence of blood in the urine.

I'm a bit older than you, so I'm aware of the aches and pains. The joint pains that roam from one joint to another are the ones that get me suspicious that I'm starting a flare. I have a hip that lets me know when the weather is changing or I've overdone my exercise regimen.

I got rituxin last August and have had no issues subsequent to that. At the time of my last rituxin, I also discontinued methotrexate, so rituxin is my maintenance drug, and I'll take it when needed as demonstrated by abnormal labs and/or a deterioration in how I feel. I also take 5 mg/day of prednisone and bactrim 3 x weekly.

Good luck.

[loisann11]

I take no other drugs for this. Haven't since got off the prednisone almost 2 years ago. I do lab work every 3 months and have a great kidney doc that has others with this. He did great things to get this under control. I just suffer from the "is it coming back" symptom. I have no problems with rituxin, no after effects or problems as it goes in. I do worry a little about long term but n one knows what long term is. Curios why you still take prednisone?

[Pete]

I take prednisone because part of my adrenal function got clobbered while on high doses. My body does not make enough cortisol, so I need to take a small dose to meet normal needs and keep wegs symptoms at bay. I got off pred altogether for about three months, but started having symptoms (roaming joint pain and blood in urine). That led to my first dose of rituxin...

[loisann11]

I take prednisone because part of my adrenal function got clobbered while on high doses. My body does not make enough cortisol, so I need to take a small dose to meet normal needs and keep wegs symptoms at bay. I got off pred altogether for about three months, but started having symptoms (roaming joint pain and blood in urine). That led to my first dose of rituxin...

Thanks so much for the info. I do have small amount of blood in urine, doc says normal for me. My GFR used to be under the 59 so stage 3 kidney disease. But last labs showed up to 72. But I have a higher rate of protein in urine so... confused. This is new for me... Sed rate is up too. Just never sure which ones he looks at. I forget which one shows inflammation but with the arthritis I figure that should be a little higher. I guess I have been looking for a magic test that tells me those bad cells have grown back.. so the Rituxin can kill them again. Is it possible they can grow back but never attack me again?

[drz]

Thanks so much for the info. I do have small amount of blood in urine, doc says normal for me. My GFR used to be under the 59 so stage 3 kidney disease. But last labs showed up to 72. But I have a higher rate of protein in urine so... confused. This is new for me... Sed rate is up too. Just never sure which ones he looks at. I forget which one shows inflammation but with the arthritis I figure that should be a little higher. I guess I have been looking for a magic test that tells me those bad cells have grown back.. so the Rituxin can kill them again. Is it possible they can grow back but never attack me again?

My doctors tell me that some lab tests are not extremely reliable and that some variation in results, especially the GFR and SED rate is to be expected. The trend is what they consider most important and they repeat ones that seem out of line fairly soon, like a week or two, to be sure a problem is not developing. Labs like ANCA don't always correlate closely with out GPA symptoms so many doctors don't use them much or pay much attention to them. Your symptoms are best measure of activity and treatment needs.