My latest Rtx treatment

[Jaha]

I had a RTX tx on Monday at CC and had another reaction about 1 1/2hrs into the infusion. They did all the right protocol, Benadryl, Tylenol and 125 mgs of sol Medrol, before starting the drip, but I still had a reaction. This was my was my 6th time to have RTX and have reactions on some of them. It started that my throat and chest got tight and then I had trouble breathing. They then shut the drip off and called in the doc to check me out, she wanted to know if I wanted to stop the infusion, and I said no lets go for it. She ordered them to give me 100mg more Sol Medrol and IV Benadryl, wait for 20mins and then start the drip up slower. I finally got thru it after 7 1/2 hrs. They told me to take Tylenol and Benadryl every 4hrs for 24hrs, which is working well, I'm just really exhausted. I have been trying to figure out why I have trouble sometimes and the only thing I can figure is that they have had me on larger doses of Preds before. Just wondering if anyone has had reactions sometimes but not always?:confused1:

[mrtmeo]

Hi Jana,
I don't know if using rtx many times can cause a reaction, but I think someone else mentioned that they only did 2 half doses or maybe it was 1 infusion every so many months instead of all 4 infusions to keep the side effects down.
Not sure if it was drz or not.
When my mom got her infusion, they used dexamethasone and not salu mederol.

[Debbie C]

Jana,how scary,I think I would of had them stop. All that benedryl you are taking now is probably making you sleepy on top of the RTX. I have only had 1 infusion and I had flu like symtoms for about a week. My dr. at CC won't let me have any more. But I think it was just a fluke for me. But I hope it does the trick for you and you start to feel better.At least with this weather,its a good time to sleep ! :sleep:

[mrtmeo]

Not sure if this will help those with rtx issues or not but keeping vitamin D levels up can possibly help rtx efficacy.
Vitamin D Deficiency Impairs Rituximab-Mediated Cellular Cytotoxicity and Outcome of Patients With Diffuse Large B-Cell Lymphoma Treated With but Not Without Rituximab (http://jco.ascopubs.org/content/early/2014/08/14/JCO.2013.53.4537.abstract)

My mom had no problems with the infusions and I keep her D levels within the optimum range of 60-80 ng/mL, but this doesn't mean she might not have issues if she takes it again. It is just info. Vitamin D is our immune modulating hormone and hormones effect the entire body.

[KathyB]

I had a RTX tx on Monday at CC and had another reaction about 1 1/2hrs into the infusion. They did all the right protocol, Benadryl, Tylenol and 125 mgs of sol Medrol, before starting the drip, but I still had a reaction. This was my was my 6th time to have RTX and have reactions on some of them. It started that my throat and chest got tight and then I had trouble breathing. They then shut the drip off and called in the doc to check me out, she wanted to know if I wanted to stop the infusion, and I said no lets go for it. She ordered them to give me 100mg more Sol Medrol and IV Benadryl, wait for 20mins and then start the drip up slower. I finally got thru it after 7 1/2 hrs. They told me to take Tylenol and Benadryl every 4hrs for 24hrs, which is working well, I'm just really exhausted. I have been trying to figure out why I have trouble sometimes and the only thing I can figure is that they have had me on larger doses of Preds before. Just wondering if anyone has had reactions sometimes but not always?:confused1:

I was fortunate with all of my Rtx infusions -- sorry this hasn't been the case for you. I remember the staff monitoring the speed at which I was infused. Slowly, slowly, slowly! My fastest infusion was about 4.75 hrs. They are so careful! Hope to hear good news of your recovery!

[Psyborg]

I have had similar but less drastic reactions on my first infusion of the two. Though my last infusion (early this year) it didn't happen.

[mrtmeo]

Hi Jana,
I found the person that explained a protocol that works for them using rtx and it is Sangye and not drz.
http://www.wegeners-granulomatosis.com/forum/medication/4294-anyone-using-rituxin-maintenance.html#post89747

[Jaha]

Thanks to all for your caring words. I'm slowly coming out of my exhaustion state and can at least stay awake to watch a whole movie. Mrtmeo, I'm taking Vit D daily but maybe not quite enough, thanks for the link I bookmarked so I could read it when I'm a little more with it. I did go to Sangye comment and read about the protocol they did for her, very interesting. I too had a lot of lung damage, plus have COPD. I going to talk with my doc about why I have had a reaction almost every time and maybe tell her about the protocol they did with Sangye.

[gilders]

Sorry I can't be of any help re RTX, but I'm always interested in people's reports on how it went for them (sorry it wasn't to good for you Jana). It helps me to prepare in case I need it in the future.

[mrtmeo]

Thanks to all for your caring words. I'm slowly coming out of my exhaustion state and can at least stay awake to watch a whole movie. Mrtmeo, I'm taking Vit D daily but maybe not quite enough, thanks for the link I bookmarked so I could read it when I'm a little more with it. I did go to Sangye comment and read about the protocol they did for her, very interesting. I too had a lot of lung damage, plus have COPD. I going to talk with my doc about why I have had a reaction almost every time and maybe tell her about the protocol they did with Sangye.
Jana,
If u can, ask your dr to do a 25 hydroxy D test to tell you where your vitamin D levels are at and this will tell you if you need to take more or not.
The optimum range, according to Dr Stasha Gominak's research is 60-80 ng/mL.

[Jaha]

Ok I'm looking for some advice on my next infusion scheduled for this Monday 11-10. My problem is that I picked up hard copies of my labs, done last Thursday and my wbc, rbc, neutrophils, lymphs, monos, are pretty high and I am wondering if I should cancel the infusion. The RTX usually should decrease all of them but they are at an infection level high. I also have low sodium and chlorides, U/A shows bacteria, wbc, epithelial and a trace leuk esterase. I would appreciate anything anyone might know about having an infusion with elevated numbers, thanks in advance. I really haven't recovered from the last one and to top it off my much loved dog came up missing Monday and we haven't found her yet, that it really adding to me feeling so poorly.

[mrtmeo]

Hi Jana,
They usually won't do a treatment if you have an infection.
What does your Dr think about your blood work?
I sure hope u find your puppy soon.

[Jaha]

I don't think my Doc has seen them yet. I didn't think that they would want to give me RTX with numbers like these. I'm going to try to email her, before I make a 4 1/2 hour trip up there. thanks for your caring reply

[miracleshappen08]

Wow! I feel so bad for ya!! I thought I would have a reaction to it, but thank God I didn't! But I did get sick the last three weeks and it burned my veins pretty bad. I lost a lot of weight during that time. I was very tired for days after but in the long run it was good for me.

I really pray you can find answers!!!

[Jaha]

Just an update
I had the infusion on Monday 11/10 and they said my numbers were so high because they had to give me so much Sol Medrol last time. This time they gave me IV Benadryl,Tylenol and more IV Sol Medrol before infusion started. Then for 2 days now I have had to take Benadryl and Tylenol every 4 hrs. or my throat wants to close up. I've been sleeping a lot and hope to get back to normal maybe by Friday. Thanks to all for your kind responses.

[mrtmeo]

Hi Jana,
Ouch!
Is it the vasculitis that closes the throat or an allergic reaction?

[keegan55]

It is maybe the mouse protein????

[Bek Stone]

Hi jaha

I had a reaction similar to urs the first time I has rtx and I have asthma they started putting it thro slower than the normally do and I haven't had any trouble since it may not b the same thing but just thought id let u know what happened to me becausr it does sounds like the same reaction

[mrtmeo]

Hi Jana,
Any update on how you are doing after rtx retreatment?

[Jaha]

Thanks for asking, I have been feeling very poorly since my infusions. I don't know exactly why, could be all the toxins that have been put into my body. I have been having a lot of stomach issues, weakness, joint pain, leg pains,headaches and exhaustion. I haven't called the rheumy, because I am really sick of going to doctors.

[mrtmeo]

Thanks for asking, I have been feeling very poorly since my infusions. I don't know exactly why, could be all the toxins that have been put into my body. I have been having a lot of stomach issues, weakness, joint pain, leg pains,headaches and exhaustion. I haven't called the rheumy, because I am really sick of going to doctors.

oh jana that really sucks.
I know what you mean about having to go to so many drs when really sick.
I couldn't take my mom to drs for months due to her being too sick.
However, you could talk to the drs nurse to let them know what is going on and to see if there is something going on or med issue.
I sure hope you start feeling better and am praying for you!

[Jaha]

Thanks I think tomorrow, before the exhaustion hits I will try to call or email the rheumy. Sometimes it takes to much energy just to take care of yourself, let alone ride in a car four and half hours to the clinic. I hope your mother's condition is improving.

[MikeG-2012]

Is your exhaustion partly from the Benedryl drip that goes along with the Rituxan Jana? I know I crash when they hit me with that in the IV.

Also, how much steroids are they giving you with the infusion? If they are giving you the entire 1000 MG as dictated by standard protocols, that might explain your crashing when that wears off. Invincible for a few days, then crash? That would be the boat load of steroids. My rheumy only has me down for 120 MG of IV steroids during my infusions.

Hope things go good for you next time!

[Jaha]

Well Christmas is just around the corner and I got the gift of another bout of shingles. I think I now know why I have not been up to par after the infusions. I am also tapering preds down to 13mgs now so that makes you feel like crap also. I'm kind of mad about the shingles, because I am planning on having Christmas this year for the whole family(around 30 people), with help from family members. I had to cancel last year because of a flare. This has been a tradition for about 14 years after my father passed away and we built an apartment on to our house for my mom. I hope to be feeling better after taking the anti-viral for a few days. We aren't having it until on the 27th and I will get plenty of help from my wonderful brothers, sisters and husband so things will turn out okay. I guess I'm just whining, shingles not only really hurt, but they also really, really suck. :thumbdn:

[mrtmeo]

Well Christmas is just around the corner and I got the gift of another bout of shingles. I think I now know why I have not been up to par after the infusions. I am also tapering preds down to 13mgs now so that makes you feel like crap also. I'm kind of mad about the shingles, because I am planning on having Christmas this year for the whole family(around 30 people), with help from family members. I had to cancel last year because of a flare. This has been a tradition for about 14 years after my father passed away and we built an apartment on to our house for my mom. I hope to be feeling better after taking the anti-viral for a few days. We aren't having it until on the 27th and I will get plenty of help from my wonderful brothers, sisters and husband so things will turn out okay. I guess I'm just whining, shingles not only really hurt, but they also really, really suck. :thumbdn:

Hi Jana,
Here is a clinical case where 4gms vitamin C every 12 hrs reduced the pain in herpes
Administration of Vitamin C in a Patient with Herpes Zoster - A case report - (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3111558/)

[Pete]

Hi Jana,

Sorry to hear about the shingles. Hope the meds do the trick so you can enjoy Christmas with your family.

[Jaha]

Thanks guys for the caring words and thanks mrtmeo for the suggestion, I'm going to try it.

[mrtmeo]

Thanks guys for the caring words and thanks mrtmeo for the suggestion, I'm going to try it.

My mom got a couple outbreaks of herpes on the nerves in her chest and back.
The vitamin C got rid of it both times within a few days.
She was on Acyclovir the first outbreak and it did nothing.

[kaysee]

My mom got a couple outbreaks of herpes on the nerves in her chest and back.
The vitamin C got rid of it both times within a few days.
She was on Acyclovir the first outbreak and it did nothing.

Before I was diagnosed and my WG was full blown I was getting herpes virus ulcers in my mouth all the time. Before one would clear up I would get two more. It was so painful. I started taking vitamin C as well and it cleared it up within a week. Highly recommend it.