rituxan people

[Raglet]

did any of you get any long term effects (yckky ones)

three weeks post rituxan i am still wheezing, and it is proving very difficult to get it under control. they won't give me another dose until it IS undercontrol (the wheezing started when I was having rituxan - a infusion reaction, but it hasn't stopped yet). I am taking maximum dose of preventer, using a spacer, using lots of combivent, etc etc and still wheezing. Usually I have very mild and very easily controlled asthma, it's never been like this before. But it seems to me that even if we DO get it undercontrolled by medication, i am still not back to where i was, which was basically wheeze free on no preventative medication (when i had the first infusion). I had also had 500mg iv steroids and iv antihistamines prior to the rituxan, so that should have stopped the bronchospasm, but obviously it didn't.

Rituxan can definitely cause bronchospasm, and it says that it is usually reversible on stopping the infusion. But mine hasn't stopped, so I am a little worried about having any more, i don't want to get even worse. Continually wheezing for this long is very tiring

thanks guys, sorry i am whining so much at the moment, seeing the doc in a few days so i will ask then

raglet

[Lily]

Hi sweetums style_emoticons/<#EMO_DIR#>/foryou.gif Geesh you are still doing it tough style_emoticons/<#EMO_DIR#>/sad.gif its not fair my friend.

Ok I'm just going to throw this out there but you can do with it what you want ok style_emoticons/<#EMO_DIR#>/tongue.gif

I wasnt familiar with combivent reliever inhaler, I can only use Ventolin because anything else sometimes makes me worse, at least Bricanyl did for some reason. I dont suppose you have become allergic to one of its components? The info sheet says dont take if you are allergic to soy or peanuts? Ok you probably arent but it just crossed my mind.

Also if you werent on a preventative med previously then it may take 2-4 weeks for an inhaled preventer to start having effect. Thats providing your airways are open enough for the preventer to 'get in' Do you have a peak flow meter you can measure your lung function with? That might be helpful in pinpointing whether the reliever is doing its job too. (((((((((Raglet)))))))

Sending huge hugs Jo style_emoticons/<#EMO_DIR#>/hugbetter.gif and the hope that someone here can offer you some helpful info.

love
Lily

[Raglet]

combivent is a combination of ventolin and atrovent - I just don't respond to ventolin alone. I have now been on a preventor for about 4 weeks style_emoticons/<#EMO_DIR#>/sad.gif as I got really regular with it about a week before rituxan. One thought is that because of my tongue mobility problems I may not be getting the full dose in my lungs, and if the spacer doesn't help I will need to move on to a neb to get the stuff in.

this is just such a major change in my asthma, and that is what worries me most. If it has been caused by the rituxan, then another dose of the stuff may make it worse again. To be honest I have always had a permanent wheeze, but it has been burried deep in the bottom of my lungs that it only meant i had to have some combivent before exercise. usually i don't need a preventor, I just use combivent. Currently my peak flow varies from 140 - 240 below my personal best (I am quite proud of the 140), nothing too drastic (well when it is down 240 it starts getting uncomfortable). I am charting peak flows 2x a day as per docs instructions.

i know there is no way of knowing whether future doses of rituxan will affect my asthma, actually i don't think my rheumie will know either, just not sure what i will decide to do about rituxan. i don't care if having it is a bit of a mission, just don't want any permanent after effects (except good ones of course).

but thank you lily, you are a sweetie

raglet

[Lily]

Hi Jo,

Oh darn it then. I'm familiar with Atrovent, hadnt heard of a combo therapy. I had to use Ventolin and Atrovent at one stage too because ventolin alone wasnt helping that much. Come to think of it maybe the Atrovent is the thing that causes problems with peanut and soy allergy, that sure would explain why my daughter and I didnt respond that well to it but my son did style_emoticons/<#EMO_DIR#>/blink.gif Hindsight is a wonderful thing.

Sounds like the neb might be needed style_emoticons/<#EMO_DIR#>/sad.gif style_emoticons/<#EMO_DIR#>/sad.gif thats not great, its like being tied to the darn thing 24/7 sometimes in order to get readings up (((((((((((Raglet)))))))))). But we do what it takes I guess. I sure hope that at least that will help get you back where you were. I fully understand not wanting this to worsen any and 4 weeks should have been time enough for the preventer to do its magic.

Ok I'm still sending huge hugs, thats about all I have left but they come with chocolate if that helps style_emoticons/<#EMO_DIR#>/bigsmile.gif

love
Lily

[lazylegs]

The only side effect I had was the exhaustion level. Hope you start feeling better soon.

Take care,
Lazylegs

[mumsy613]

Oh, Raglet

I was hoping to check in to find better news.

In the asthma department.....Rituxan stopped my pulmonitis which left me breathless and low on Oxygen. It did not stop asthma however. My pulmonologist said it most likely would not since the two have different causes. Pulmonitis was caused by inflammation (lupus), but my asthma has been caused by reactive airways (fumes, perfume, etc) and sometimes allergy.

I just spent a day in emergency with a major asthma attack......4 breathing treatments later, and a boatload of antihistamines and a taper schedule of 60mg pred (thought I was over that)...I am now breathing well. This is ten days later. I am down to 10mg pred again and dropping fast, so I am hoping the asthma does not return when the meds are gone. I have already stopped the atarax and have no need of ventolin right now.

None of the asthma happened until I was finally off prednisone (this was my second round in emergency). So...the old pred from lupus treatment had been doing a great job of keeping my allergies under wraps. They are back. We have no idea what triggered this one....the last attack was allergy to fentanyl. This is something else. Who knows. All I know is that it can take a darn long time for the wheezing to subside completely from a major attack.

First things first....get that wheezing completely under control. Then, go on from there.

One other thought. Not a happy one. Rituxan circulates in the blood for about six months. Maybe that is what is still causing the wheezing...if you are really seriously allergic to it. Ask your doctor.

Take care. This too will pass.

Fran

[Raglet]

Fran, if rituxan circulates for about 6 months, then that makes more sense as to why I am still wheezing. Thanks for that info. Actually today I have been better, thankfully, for the first time in ages I feel like I can breathe at least with the top part of my lungs, still a little wheezy but much improved. I think using the spacer to get the meds in is finally paying off.

I have an appointment with my rheumie on monday so I will see what i say. So far the plan is to try again, but turn off the rituxam (for good) if I start wheezing again. Obviously I really want to get all the rituxan in (2000mg in total, so far I have only had about 300mg) so fingers crossed. They are going to use the same premed protocol they used last time (40mg pred for 2 days, 500mg iv steroids and iv antihistamines, I only hope it works better this time.)

I am not expecting rituxan to stop my asthma, but I would prefer it didn't worsen it style_emoticons/<#EMO_DIR#>/blink.gif

still, i am just glad i am feeling better today. hope you're feeling better too

raglet

hmm, just read that the half-life of rituxan is somewhere between 76-240 hours, which should mean that it has cleared by system already. So I am pretty clueless here, will check it out with my doc

cheers

raglet

[tbunny1]

style_emoticons/<#EMO_DIR#>/foryou.gif Honey, you really do go the full route with this disease, don't you! I'm so sorry this isn't working out for you as well as you (and all of us) had hoped.

I too have developed asthma and reactive airway disease secondary to my adventures with lupus. I use the combivent inhaler as my rescure inhaler. Sometimes I use a spacer, sometimes not. To really get the medicine into the deep parts of your lungs you need to use a nebulizer.

Combivent used in a nebulizer is called DuoNeb. Works quick, and lasts for most of the day , but will give me the shakes and make me anxious. I used to follow that neb with another one called Pulmocort, an inhaled steroid. While experimenting with the pulmonologist on this stuff, we have discovered that just the pulmocort in the nebulizer a few times a day works wonders. Very few side effects, quick response, and I am usually off it in just a matter of days. Seems to be rather specific to us lupies she said! Big plus - I can usually get the symptoms resolved without having to take prednisone!

Could it be possible that you are reacting to something other than the Rituxan? Maybe a solvent or cleaner at the lab? Pollen in the air? I hope that you and your health care providers can get it figured out, and get you feeling better.

Hang in there girlfreind! Tracy

[Raglet]

Tracy, I would LOVE to be reacting to something else, the only problem is that this started with the rituxan infusion (they had to abandon treatment because I suddenly started wheezing and they couldn't get it under control, and four weeks later it is only just settling down now) - the only thing that makes me think it is rituxan is that my asthma has never been this severe before (usually it is very mild, only need the occaisional puff of combivent, no preventer). So who knows. I just don't want it to get any worse, fingers crossed it won't

Pulmicort hasn't worked for me, I have swopped to flixotiide and am doing better now. My asthma (and my epilepsy come to that) aren't part of my lupus, I had both long before I had lupus (I am from a family of asthmatics so it is fairly unsurprising i have it to)

have a great day

raglet

[specialk16]

Rags,

I was really hoping that they figured out something for you. It stinks that your asthma didn't agree with the rituxan. Good luck to you and please keep us all posted on your health. :)