Rituxan Treatment Stopped Steriod Specialist went nuts at me

[Cekmsover]

Hi Guys, I had my second infusion of Rituxan today after the first one two weeks ago. I Stopped taking Pred. I dont like, although it reduces your inflammation, sends me loopy and Just makes me feel crap. Brutal long term. I though the Idea of taking Rituxan was to get off Pred? Specialist told me I have to take the cortisol for the next 6 months so i Don't make antibodies to the Rituxan which can cause big problems. Has anyone heard this? I am only doing these treatmentscso I can get off Pred, as like wegs symptoms it also runs down the body real fast. So how question is have people tapered Pred after being on the Rituxan and how quickly did they do it? Cekmsover.

[Alysia]

Hi,
be careful. rtx takes 2-3 month untill it start working. you must be on steroids when you get the IV, to prevent allergic reaction. it takes a lot of time reduce pred, and NOT AT ONCE ! sometimes you can never stop it. I think it is better to listen to your doc.

[annekat]

Listen to Alysia and your doc. You will be able to start reducing the pred at some point, but we all need high doses at the beginning, and pred is an essential part of our treatment along with whatever immunosuppressants we are taking. They work together. The point of RTX is not to get you off pred but to get your immune system under control and stop the progress of Wegener's and the extreme damage it does to your body. It takes time. I know pred is very problematic for some people in the way it makes them feel, but not taking it will make things even worse.

[Wegetarian]

I guess its possible to actually die from stopping taking preds suddenly. But yeah, the effects could be pretty bad so definitely talk with your doc before you alter your dosage.

Here is a snippet from the first article I found

"Abruptly stopping hydrocortisone in these individuals can cause symptoms of corticosteroid insufficiency, with accompanying nausea (http://www.medicinenet.com/script/main/art.asp?articlekey=24732), vomiting (http://www.medicinenet.com/script/main/art.asp?articlekey=101642), and even shock (http://www.medicinenet.com/script/main/art.asp?articlekey=85053)."
http://www.medicinenet.com/hydrocortisone_oral/page2.htm

[Cekmsover]

Listen to Alysia and your doc. You will be able to start reducing the pred at some point, but we all need high doses at the beginning, and pred is an essential part of our treatment along with whatever immunosuppressants we are taking. They work together. The point of RTX is not to get you off pred but to get your immune system under control and stop the progress of Wegener's and the extreme damage it does to your body. It takes time. I know pred is very problematic for some people in the way it makes them feel, but not taking it will make things even worse.



i was not getting any of these symptoms and was told by many
To get off the cortisol. I like they way doctors feel you up
with these drugs and brain wash people to thinking a life does not exist without them
more there drugs. It's absolute bullshit. There are people who acheieve
a drug free remission after treatment, some reside on this forum.

[Dirty Don]

after treatment

And therein lies the contradiction in your statement...hmmm, do I want to be brainwashed dead or alive...like I have a choice...c'mon people...quit denigrating the use of these drugs...you're scaring someone somewhere just as you were scared the first time you encountered WG...and the ONLY reason you're here now is because someone had the education, awareness, and sense enough to get us on the right drugs right away...remission? Yeah, love it, have heard it, it's not possible until docs/researchers find the roots of the disease...in the meantime everyone is guessing...some better than others, some with better results than others...but do not bad mouth that which one doesn't understand nor accepts...rant for the day over...thanks CKSMOVER...I needed a thought or 2 today!! LOL!

[pberggren1]

RTX actually starts working right away.

[Wegetarian]

..remission? Yeah, love it, have heard it, it's not possible until docs/researchers find the roots of the disease...in the meantime everyone is guessing...some better than others, some with better results than others...but do not bad mouth that which one doesn't understand nor accepts...rant for the day over...

What do you mean? Isn't it common practise to try to wean of people from the drugs once the disease is under control. Of course a lot of people flare up again at some point, but certainly life without meds should be a possibility at some time for most of the Wegs? I do hear a lot of people have trouble getting of cortison completely, as the body might not produce cortison naturally after taking it orally for a long time.

[Cekmsover]

Hi Phil,
Thats what I was told, even by my doctor. He said that you will see some improvement quite quick and then we can start the steriod taper and get you off them.
Then another doc tells me you cant stop the steriods. The entire reason I took the punt and treatment and punt on taking the RTX was to get off the cortisol.
I thought this was a smarter option and better for my body and getting the inflammatory process under control.

I will see what I happens over the next 2-4 weeks as I have now had 2 x 1000mg infusions two weeks apart, and you would think thats enough knock the disease process for 6, or at least for a while any how.

C

[pberggren1]

Sometimes it is hard to get off the steroids and sometimes one can never get off them but I think everyone deserves the chance to try to get off them if they can.

[Cekmsover]

Hi Wegatarian,

I see that you have just been delivered the news and its a bummer but a good life can exist. My post is out of frustration for getting conflicting evidence from two specialists overseeing the treatment within a two week period. My advice is get them to write down everthing and be crystal clear about what is going on.
I had two skin biopsies, Nose and Skin and it both came back negative, but because I c-anca postive with a titire of 8, they are still treating me like WG. Yet to literature to confirm the diagnosis is to have the blood work then be confirmed by a biopsy. So Dirty Don is right there is still alot of guess work going on, and thats the real annoying bit, because we still dont know what really sets it off, drives it or stops it. Immunosuppresants do give relief and are the best option or in some lifethreating cases the only option to science moves forward and gets it licked.

Stay strong, smash the green juices, exercise as best and as hard as you can, meditate and follow Joel Furhman diet - Stay away from Sugar and those things in themselves will help you BIG TIME while on treatment. Just because 5 of of our bodies are ill, doesnt mean we dont nuture the remaining 95%. That is what my GP's advice was.

before having the inflammatory disorder I played A Grade Australian rules for over 150 games semi professionally and complete half marathons and half triathlons. So it wasnt from being a junky.

C

[Dirty Don]

I don't have stats on the commonalities. And having an optimism for getting off drugs is great...but stats don't support the realities that most of (80%) us relapse in some form or another usually sooner than later. So 'should' becomes a nominal state...as it seems to be with states of remission.

[drz]

I don't have stats on the commonalities. And having an optimism for getting off drugs is great...but stats don't support the realities that most of (80%) us relapse in some form or another usually sooner than later. So 'should' becomes a nominal state...as it seems to be with states of remission.

I think the numbers were 50% relapse in the first year off all meds and 80% within the first two years when off all maintenance drugs. I don't think they have numbers yet beyond that, like for five years, but there is the small percentage (20%)who can get off all maintenance meds and not flare for at least two years. If they have a good chance of surviving a flare without any major problems, it seems a worthwhile risk to try get off all meds. For some of us that doesn't appear to be an option so we will take our meds till they find a cure or a better med to treat GPA. The meds don't guarantee we won't flare but should reduce the risk of a flare anyway, and hopefully also decrease our risk of a flare too.

[aewaustin]

Ok just had to put my 2 cents here:

- Cekmsover - We are similar, I have done 6 1/2 IM and two IM, just to give perspective on the source :)

1992-1994 - I did high doses of Pred and did a round of CTX, then was on Imuran. Had severe kidney involvement and severe vasculitus.
1994-2010 - Drug Free
2011-now Pred, CTX, RXT, Imuran. Tapered off of Prednisone and now just on Imuran. Kidney involvement.

Folks yeah Pred sucks, sucks big time, but it is an amazing drug for us and I am thankful for it every day. It is a god send for us to get Wegs under control. Stopping prednisone is just not a good idea, research tapering and work closely with your doctor on how to do it.

I just want folks to know that I personally have been drug free for a very long time and was very healthy and doing IM length triathlons and running. And actually I am training for a 1/2 marathon right now. The key is to "not be stupid" which is my new motto. You can do the meds and be smart about it and be done, or you can do it half assed and then have to do it again.

Regarding RTX - For me it worked in 24 hours the first time I got it and it was amazing. I went from not being able to eat much to eating pizza the next day and walk/run 3 miles the next weekend (the day before getting the first iv taking a shower was a huge event and made me exhausted). I don't think that is normal, but it truly was awesome. The next two rounds were not that way at all and they were really hard on me. So even for the same person this all can be different each time.

My biggest thing is that Prednisone is a huge gift that just sucks to be on. We all want off it. Just be super smart about this stuff. And I learned this one the hard way as I ended up in the hospital over it, so it is a big deal and you just have to stay smart and educated.

Ok off soap box now...

Well one other thing, to reduce the risk of relapse I recently went gluten free and now working to get dairy out too. Gluten pokes at your immune system and now that I have my immune system under control I don't want to be poking at it. If interested this is a post I shared. http://www.wegeners-granulomatosis.com/forum/general-wg-chat/3397-what-i-wish-i-had-known-two-years-ago-paleo-gluten-free-topic.html

[Alysia]

[QUOTE=aewaustin;74694]

My biggest thing is that Prednisone is a huge gift that just sucks to be on. We all want off it. Just be super smart about this stuff. And I learned this one the hard way as I ended up in the hospital over it, so it is a big deal and you just have to stay smart and educated.

/QUOTE]

can you, please, tell us more about it ?

[Sjap0655]

I love this thread!!!! Today was rough for me emotionally. September 16, 2013 I went back to 60 mg prednisone after being on 5 mg and having lost 17 lbs. Today I looked at the scale after having (2) Iv dose of prednisone and RTX and I'm ready up 8 lbs and I think my buffalo hump is coming back!!!!

I just started reading Eat to Live and Paleo diet and downloaded couch to 10k app to help reduce these awful side affects. But I must say No matter how much I hate this nasty drug, I too feel blessed that it's keeping my WGs under control so I can enjoy my. 8 month old son and hubby and not feel horrible. This new life as a Weggie has it's challenges physically, mentally and emotionally but these post help me SO much bc I am not alone with my struggles.

[annekat]

Pred doesn't bother me as much as it bothers some, and in fact, I kind of like it. I don't think I'm alone there. But that doesn't mean I don't want to get off it, as the thought of being on it the rest of my life is kind of scary. What confuses me a bit is, which is playing the bigger part in keeping my Wegs under control, the pred, or the immunosuppressant, MTX?

[Dirty Don]

I don't know that one supersedes the other in the case of WG Anne. Each does it's own job. I think that cuz of the inflammation going on on our arteries, the pred has the most immediate effect, but the mtx is what's holding us together by reducing activity of AI. As for taking pred, low doses anyway, at OUR ages...I'm not worried about it...if I have bone loss at 80, false teeth, a little hyper...so what! I'll just be glad to get that far, not concerned about my bones or other things at that point!! LOL! Luvya Anne!!!!!!! Darn N'Westerners....

[annekat]

Thanks, Don, luvya, too! Once a N'Westerner, always a N'Westerner. I don't think my doc knows, either, as he wasn't sure which to start lowering first. I chose the pred, figured it would be easier to tweak as I went along. I figure if I'm on 5mg. pred for most of the rest of my life, at "our ages", yes, it will be acceptable, but I'd like to at least get down that far. Even though I like it!

[whatthewhat]

This is such a variable, personalized disease that I cannot speak for others, but here is our experience: our adolescent daughter had the 2 rtx infusions also (as well as being on mtx, pred, etc etc etc) after diagnosis. Docs said rtx begins working but wouldn't show full effects for three months or so. She has second infusion on April 11 I think - spent next

[whatthewhat]

(Sorry: phone issues) ...spent next 5 months slowly weaning off Pred & went completely off it by Oct 1. She'll begin going off Mtx in January, is the plan. Mind you, she has involvement in lungs, nose, sinus, and skin only, and started the disease with an undamaged (never drugs or alcohol or cigarettes) body and the fitness of a teen athlete. The pred wean took time & doctor's supervision (and blood monitoring.)

[annekat]

(Sorry: phone issues) ...spent next 5 months slowly weaning off Pred & went completely off it by Oct 1. She'll begin going off Mtx in January, is the plan. Mind you, she has involvement in lungs, nose, sinus, and skin only, and started the disease with an undamaged (never drugs or alcohol or cigarettes) body and the fitness of a teen athlete. The pred wean took time & doctor's supervision (and blood monitoring.) Your daughter appears to be getting off the meds a lot faster than I or many others on here, so congrats to her! I have about the same involvement as she, except with more ears and less skin. I am on the same meds, although I started with CTX because of the lung involvement.

[NicShaf]

Cekmsover,
I see that this was posted a while ago, but I really hope you took your doctor’s advice and did not cut out Pred cold turkey. When you are on Pred, you body stops making natural cortisol, and if you stop at higher doses your adrenal glands won't start creating it again which can result in organ failure. As most have said, Pred sucks, but it is a necessary part of treatment. I have been off Pred for about a year and a half now, but it took me a little over a year to slowly taper from my original 60mg dose.
The goal is to be drug free, but this disease is very temperamental and you have to take your treatment slowly.

I hope the Rtx is working for you and that you're doing well.

[Cekmsover]

Hi aewaustin (http://www.wegeners-granulomatosis.com/forum/members/aewaustin.html) ,

I havent been on the site for a long time but just read your reply.

So you had 16 years drug free remission? Wow that must have been a much better period in your life considering what you went through first up.

Were you feeling reletively normal with low CRP and all blood markers in the clear, or what it grumbling and you just sticking it out and running those IM?

Cekmsover..

[aewaustin]

Cekmsover - I was totally normal, didn't even have a doctor for Wegs :) Through the years I have always had a little bit of blood in my UA test (which is the only thing that is every a marker for Wegs), but until symptoms get bad it just is what it is. But yeah, I got Wegs, dealt with it, and then totally moved on and lived a great life and forgot about it.

Now I am pretty much in remission, still a little blood, but yeah looks like remission. To help avoid flares I have really changed my diet and gone Paleo. I can't believe my doctor did not tell me about it, but found it on my own. For folks with auto-immune diseases it is just a no brainer. No need to poke at your immune system with foods that are not good for it. For a good site you can check out Success Story Summaries | Mark's Daily Apple (http://www.marksdailyapple.com/category/success-story-summaries/#axzz35St2Jb61) . Don't pay attention to the pics, but look for a story that talks about how going Paleo gets folks off lots of medicines.

Anyway, good luck!

[Cekmsover]

Cekmsover - I was totally normal, didn't even have a doctor for Wegs :) Through the years I have always had a little bit of blood in my UA test (which is the only thing that is every a marker for Wegs), but until symptoms get bad it just is what it is. But yeah, I got Wegs, dealt with it, and then totally moved on and lived a great life and forgot about it.

Now I am pretty much in remission, still a little blood, but yeah looks like remission. To help avoid flares I have really changed my diet and gone Paleo. I can't believe my doctor did not tell me about it, but found it on my own. For folks with auto-immune diseases it is just a no brainer. No need to poke at your immune system with foods that are not good for it. For a good site you can check out Success Story Summaries | Mark's Daily Apple (http://www.marksdailyapple.com/category/success-story-summaries/#axzz35St2Jb61) . Don't pay attention to the pics, but look for a story that talks about how going Paleo gets folks off lots of medicines.

Anyway, good luck!


Dude can we catch up outside the forum, your story is where I need to go and have tried sometimes but fell of the wagon.
I have to get this CRP from 80 back down to where it should be, and get back on the track and start running hot laps. I am 10kg down at the moment in muscle and people hate to see it, havnt worked in 12 months.

Love to chat with you about how long it took to get well, 1 month, 3 or 6 month etc.

my skype address is valentisgroup, please ping me.

C