Rituxin - and progress?

[Middlesista]

Wondering if folks could share some of their experience with their Rituxin treatments and progress. Are many folks able to live their lives when not in a flair? I know we have to be vigilant for symptoms but hard for me - being a new person around these parts to get a sense of any sort of normalcy for folks. I do understand we all have different symptoms but the more I read the more uncertain I am- and maybe that is the nature of this thing but I thought it would not hurt to ask folks here since everyone has been helpful and supportive

Just completed 4th infusion, am also on prednisone 40mg and Biaxin, folic acid, Vit D and a few other meds. My initial sx was vision loss, eye pain and sinus pain. Sinus biopsy was negative, they found typical GPA lung nodules but the lung biopsy was not adequate for results and I was told one of the nodules had shrunk.

I guess I am not sure what to,expect. Like everyone here I would love to hear the world remission and I know what a slippery slope that can be. I also know that I am fortunate to have started treatment withn a few days of diagnosis and my vision came back with high dose IV solumedrol

I do think GPA has been lurking in me for a long time where as I lost my hearing in one ear 2 years ago and have had elevated SR and CRP for over 10 years but nothing was figured out at that point. Kidneys are OK they told me nothing major and BUN and CREAT are fine

any insight or experiences appreciated.

[debra]

Hello, my sista in the middle.... Others will help u out I'm sure, as u know my deal... Just wanted to say, wegeners reminds me a lot of the game hide n seek? Remember this game? That's it! Just sharing this with ya..... Sista, u got this treated pretty fast, so I see good things for u..... Stay positive, and tell the weg dog daily, how you'll kick his ass! He hates this......... Deb.

[Middlesista]

Thanks Deb -

Hope you are gearing up for your appointments - we gotta fight this thing and make our life our priority! You can do it and you are so worth focusing on you. Just wish the medical systems/insurance did not make it all so difficult for the regular type folks. I bet Oprah would help - I am realizing we need to get info about this thing out there....

[debra]

Sista, I hear ya.... No,screw opra, don't be fooled by her.. she had me fooled as well... It's all for show, not from the heart.... My trust is in God, first and foremost. Then comes wherever he leads... Brings more neede peace and patience to deal with all the crap.... And there sure is a lot of that huh? My sista, u will have this in control in no time....... Deb.

[Pete]

For me, rtx was pretty easy. I had two infusions in October 2013 to knock down a flare. I was a little tired the day after, but otherwise uneventful. It took about six weeks for labs to return to normal. I continued to take 15 mg/ wk of mtx through these tx.

I had four infusions in August because the side effects of mtx were increasingly bothersome. I discontinued mtx the day before the first one, and I've been off it since. Labs continue normal. I'm able to do everything someone who's 69 going on 54 should be able to do.

[Middlesista]

Great to hear your progress Pete! Thank you for taking the time to share! I am 4 weeks out with Rituxin. If I had not had the vision issue I never would have known that anything was wrong with me acutely other than occ aches and pain so don't have a lot of what to look for other than vision. The lung nodules I had no symptoms from those but am dealing with the aftermath of that fool needle biopsy which has wrecked havoc with my lungs

69 going on 54 sounds good to me!

[Birdie]

any insight or experiences appreciated.

Hi Sis,

Speaking from my exp only, and not based on Rituxan... lung nodules go away fast, hearing loss/damage stops but doesn't improve or "heal", vascular issues go away almost immediately with high dose pred and they actually heal shortly thereafter, other tissue stops developing granuloma and existing granuloma is gone in the time it takes for normal cells in the same area to die and be replaced. Pred is the monster... 800 pound gorilla with side effects to match until the dose gets down to something manageable. Lots of swelling, eye damage, skewed perception both vision and thinking, 800 pound gorilla appetite... and I worked through it all for over three years, when not in the hospital... usually only took a couple days after hospital before returning to work... am I stupid or what?

[debra]

Birdie, no! NO,not stupid! CRAZY, yes, but no not stupid..... Deb. Xo

[Middlesista]

Thanks Birdie - helpful information and pleased to learn you were able to return to work once you left hospital. Don't think you are stupid - sometimes we work in order to keep our insurance and $ coming in to pay the bills. I am hoping to return to work next month - if it was not for the lung issue my RA said I would have probably already been back. I carry all the insurance for the family so that is a stimulus for me to get back on my feet and back to work.

Dealing with the prednisone - doing crazy things with my blood sugar and am working to keep this in check but using insulin in the short term - never been on insulin before and hopefully will stop using this once prednisone is able to be tapered down. I so watch what I eat right now due to the carb issue What dose of Prednisone did you notice a positive change?

When you say vascular issues what are you referring to - skin problems? Hearing - mine has been gone for over 2 years in the right hear so did not think that would come back but would love if I lost no more hearing so that is good to "hear"

[Birdie]

What dose of Prednisone did you notice a positive change?

When you say vascular issues what are you referring to

I was at 80 mg, more or less, for about a year. That dose was instantly an incredible "positive change". Had extreme difficulties reducing because I was full of infections which they didn't really look for. High dose pred masked the infections. Reducing it allowed the infections to pop up and cause confusion for the dorctors. They thought the issues when reducing pred were caused by the reduction, no thought that it was every part of my body being infected, every system with massive infections. Once the infections were noticed and taken care of (infectious disease doc camped in my room for about ten days), then I was able to reduce the pred with only normal reduction issues. So to answer your question, each 20 mg reduction was a giant step, giant improvement. Most of the pred side effects became manageable & tolerable at about 20 mg. It took several months to get there from 80. Sat at 20 for a couple months, then quickly dropped to 5 mg, in about three weeks. Stayed at 5 for two and a half years or so, reduced to 4 about two months ago. BTW, prednisone sucks.

My veins and any place with high blood flow, were generating massive amounts of granuloma. My hands were totally crippled, tissue in my mouth mostly gone, teeth ready to fall out, they were talking about pulling all my teeth and amputating half my jaw, massive swelling, legs had turned black, veins everywhere looked like they were giant black worms under my skin.

A few hours after the first dose of 80 mg pred, ALL the pain was gone, most of the swelling, etc... all gone. Within a couple weeks all the outward signs of that damage were gone and people started saying "but you don't LOOK sick?"

[debra]

Birdie,hello there! Birdie, what was the amputating half you're jaw going to do? I never heard of this? Almost like preventing it from spreading? If you would please clarify this for me I'd appreciate it, especially since I have mouth involvement. Weird you mensioned tissue in you're mouth,because even my tongue is different, almost feels like there's no protective tissue there anymore? Like its worn down or something? Real strange... Also, here's another for ya, wipeing my mouth, like with a white napkin,pale pink will be on the napkin,like color wearing off!!! No lipstick, no bleeding! I can't even tell this to a doctor! She will bring in a straight jacket, inplace of the stethoscope! What the hell is this doing? Ha ha... Oh boy, it never ends does it....... Deb.

[Middlesista]

Wow Birdie - now that was a lot to deal with for sure! The prednisone at 80mg - glad it helped your symptoms but geez those infections. X I am at 1/2 that dose ( so far) and it has had such a profound impact on everything, I truly wish none of us had to deal with this although I well understand our reality.. Gotta stay strong.

[Birdie]

what was the amputating half you're jaw going to do? I never heard of this? Almost like preventing it from spreading? If you would please clarify this for me I'd appreciate it, especially since I have mouth involvement.

There was no tissue in my mouth that wasn't... I think I said I can't describe it... There was nothing left to cover the bone, nothing connecting anything together, it was just granuloma, puss red blue green black white soft inflamed swollen lookin like a lab experiement in beaker that went horribly sour... yukkkkkeeeeeee! And that was nowhere near my biggest issue. Yep, talk about rapid onset? Never been to a doctor before, never been sick, didn't know what a cold was like except hearing others whine about them... took about four months of slowly increasing issues, then in a few weeks everything went really really really wrong... really really really fast, and ramping up really really really fast... getting worser and worser at a faster and faster rate of worser and worser... At the time I thought it was an attack of the killer Putins! So there! That'll learn ya to ask me for specifics Deb. :) :) :) Don't know what else to say.

Five hours after 80 mg of pred and I was gently eating a grilled ham & cheese with fries, still in the emergency room. It only took about a week for my teeth to be solid again, not loose. A few months later and the tissue in my mouth had been replaced, to mostly normal, with reduced gums around my teeth. Pretty good indicator that treatment was working, dontchya think?

[debra]

Birdie,thank you,I didn't mean to put you on the spot... Pretty scary stuff, and real bizarre... Everyday, pink comes off my lips? Why? How on earth is this even possible? I won't dare tell a doctor this, or how it feels like my tongue is wearing off! I say this here because u all know this is a crazy weird, nothing off limits, sucky factor of extreme magnitude sickness..... Why is everyone against Putin? Deb.

[Middlesista]

Question about appetite - on prednisone just reduced to 35mg. Since I have been sick -no appetite. Is this par for the course for many even when on Prednisone?. Tired a lot but not sleeping due to Prednisone. Plus really de-conditioned due to needle biopsy lung "accident" which threw a huge wrench in recovery. I finished my last of 4 Rituxin treatments 2 weeks ago and can't say I feel any different and the good news thus far is that I still have regained my vision which was reallythe only symptom I had until they stumbled on those pulmonary nodules . Do folks get an appetite back when things start turning around for them in a good way and does the fatigue get better?

Thanks again everyone - I find coming to the support group provides me not only with information but also emotional support.

[Birdie]

Question about appetite

also emotional support.

Prednisone makes you extremely hungry. I thought it was absolutely 100% true for everyone. Other health issues, maybe medications, must be overwhelming the pred. Makes me wonder if the pred is doing it's job of pumping up your metabolism. You should be eating all the time... worried about weight gain...

For emotional support, go back to Debs party (looney as it is). :)

[debra]

My sista in the middle, come over, just as Birdie said, we are slightly nuts over there... Only slight... Sista, if you have lack of an appetite on pred, then its maybe an infection still going on? Because of the whole lung issue? Just a guess, as I know pred increases appetite. A lot.... Best of luck, sista in the middle.... Deb.

[kaysee]

Middlesista - I have had two rounds of RTX. The first in July 2014 and again in October 2014. According to my doctor a second round usually follows six months after the first. My second round was done sooner because I have kidney involvement and my creatinine levels were not coming down. My kidney doctor was extremely concerned and felt it necessary to do another round of RTX as soon as possible. The creatinine level did eventually come down and have been stable ever since. Still, I have only about 35% kidney functions thanks to WG. I was on prednisone during the RTX treatments but started to taper soon after. I have been off pred since last February and I have had no WG flares. I'm feeling great with the exception of some hip pain due to fluid (a result of the inflammation) in the joint and osteoarthritis..

[Middlesista]

Due to concerns with blood sugars and the prednisone I am watching what I eat so am losing weight but not to the same amt I had been prior to diagnosis. I just recall that when I lost my hearing but was not diagnosed two years ago I lost like 20 lbs and thought it was a great thing - not knowing what was probably going on and then appetite and weight came back. I was treated with prednisone for the - what they called sensioneural hearing loss. I have to wonder if the GPA went into hiding after that time or was quietly lurking waiting for another opportunity to strike again.

Waiting for the Rituxin to kick in full force and put this into remission........

As my friend said to me - this is all so surreal.

[Birdie]

I was treated with prednisone for the - what they called sensioneural hearing loss. I have to wonder if the GPA went into hiding after that time or was quietly lurking waiting for another opportunity to strike again.

Pred boosts metabolism to the point that your body deals with the Wegener's issues. Metabolism so high it can undo the damage as fast as it's done. It takes a lot of prednisone. I met a Wegener's patient in the hospital, later heard that she was moved to ICU and put on 1,000 mg of pred. as a desperate attempt. As expected it put her in a coma, but it didn't work which was also expected.

[Alysia]

I wrote this long ago

http://www.wegeners-granulomatosis.com/forum/medication/3159-rtx-outcomes-my-list.html

[Middlesista]

Pred boosts metabolism to the point that your body deals with the Wegener's issues. Metabolism so high it can undo the damage as fast as it's done. It takes a lot of prednisone. I met a Wegener's patient in the hospital, later heard that she was moved to ICU and put on 1,000 mg of pred. as a desperate attempt. As expected it put her in a coma, but it didn't work which was also expected.

Was also on huge doses of prednisone to try and get vision back and thankfully no coma and it seemed to work for the vision at least. Poor lady - those negative outcomes just tear me up - gotta strive to be positive

Another question - wouldn't be me if I didn't have YET ANOTHER QUESTION - anyway. Is it the inflammation that is going on in the body that makes you feel hot at times? I don't mean the sweats that some folks speak of - just hot and not related to infection. I think Anne mentioned something about the the body reviving up and weight loss - it made sense

not having a lot of prednisone energy that is for sure but wonder if that is due to lack of sleep or that Rituxin has not kicked in and prednisone is just holding things in check. I'm 35mg right now -

Thanks Birdie!

[Birdie]

Is it the inflammation that is going on in the body that makes you feel hot at times?

not having a lot of prednisone energy that is for sure but wonder if that is due to lack of sleep or that Rituxin has not kicked in and prednisone is just holding things in check. I'm 35mg right now -


I had massive prednisone induced inflamation but didn't feel hot.

I know, I know... never ask a woman her weight... 35 mg could be a lot if you're tiny. I'm 6' and 180 pounds, reducing to 35 mg I started to stop climbing the walls, but I was eating at least three times normal just to maintain my weight.

Prednisone kept me awake until I learned how to take it... as early as possible and always with a large breakfast. Early in the day is the lowest cortisol level anyway, so that's the time I take prednisone. Taking it early also means it is starting to run down by bed time.

[Middlesista]

I wrote this long ago

http://www.wegeners-granulomatosis.com/forum/medication/3159-rtx-outcomes-my-list.html

very helpful - Thanks Alysia!!

[Middlesista]

Birdie - nope, not tiny by any means and could always stand to lose some weight but heck - not like this.

I take Prednisone early in morning also I read about the 1-2 of the med-the peak and what not so knew early was best
I tend to fall asleep so early anyway - like it is a challenge to stay awake after 8pm and sometimes I crash earlier although I try to fool husband that I am really not sleeping - just resting my eyes I tell him. You know trying to pretend that I am fine

i have read a lot of folks have this awful fatigue - tired of being tired. You wrote about prednisone induced inflammation - prednisone decreases the inflammation right? Is that a typo? are you trying to mess with my mind?

Thankis Birdie

[debra]

Kaysee, hi. I am glad you're doing well.. Nice to hear good news.... Birdie, my friend, I'm sorry about you're friend from the hospital..... Deb.

[Birdie]

i have read a lot of folks have this awful fatigue

Lately, like the last two months, I've been very slowly improving. I'm the only one I know of with three different wheelchairs entirely due to fatigue.


You wrote about prednisone induced inflammation - prednisone decreases the inflammation right? Is that a typo?

Nope, not a typo. Different kinds of "inflamation"... Guess I should have used "swelling" instead. At times, while on high doses (50 to 80 mg), parts of my body were swelldup twice normal size, like feet literally bigger than the shoes they're supposed to fit into. Legs swollen until the skin was tearing, hospital put on big blow up pants to keep my skin from tearing open. Veins bursting all over turning me into one big black bruise. Never heard of "Moon Face"? Some people even get a big hump on their back & shoulders, or neck.


are you trying to mess with my mind?

I have somebody else for that, and she dishes it out fairly well also.

[debra]

Hey, Birdie, quick question. Does you're insurance cover three wheel chairs? I couldn't even get a pair of cruches, dome years back! And I couldn't walk! Wow... Just wow... Birdie, sorry you had to go through all this..... Deb.

[debra]

Why bother at this point to apologize, for typos? Who knows......

[Birdie]

Does you're insurance cover three wheel chairs?

I don't have health insurance.

[debra]

Oh man... I meant the VA, ya I guess maybe you don't.... Deb.

[Middlesista]

Birdie - Moon face, know all about that. So hoping that I am able to remain humpfree - time will tell

The swelling , edema - ok I get that. 50 to 80 mg of Prednisone is intense. Folks have correctly written that dealing with the side effects of the drugs can be as difficult as dealing with the disease

[Birdie]

So hoping that I am able to remain humpfree - time will tell

There are things the patient can do to impact the effects, for better or worse. Eat when logic demands, appetite does not have to be the determining factor either way when it comes to eating. A bathroom scale is extremely important in the decisions of what and how much to eat, know your weight TODAY, EVERYDAY, not some vague notion of how much you weight. Drink a lot of water, stay away from salt, eat lean, etc... you could also consult a good nurse about diet, if you know one. :)


The swelling , edema - ok I get that. 50 to 80 mg of Prednisone is intense. Folks have correctly written that dealing with the side effects of the drugs can be as difficult as dealing with the disease

The real challenge *IS* intellectual. Honest, objective, wise and educated decisions in everything you do. Put your proffesional experience to work for you.

[debra]

Birdie! Why, hello there..... Birdie, words of wisdom... Deb.