PDA

View Full Version : 1 year anniversary


mumsy613
06-17-2006, 10:33 AM
Hi Everyone

Well, one year ago I promised updates on how I was faring following Rituxan treatments for SLE. I am hoping this will be the last for a while.

This week's lab results are in. I have new B cells...finally!! They are not yet in the normal range, but they are on a solid return. We are all hoping and praying that the new one's are scrubbed clean of the SLE nastiness.
Time will tell. This will be the last of the lymphocyte typing and T-cell subsets. All the T-cell subsets are in the normal range. WBC and RBC are normal.

From now on, there will be regular blood tests for inflammatory markers....sed rate, CRP, ANA & DsDNA. New Rituxan treatment will be necessary if the inflammatory markers reappear.

By the way, the Rituxan also demolished my ANA and dsDNA.

I feel well, and am taking vitamins, ert, and occasional allergy meds. That's all. Free at last.

I have not been especially ill since the treatments. I only had a couple of lower respiratory infections which were knocked out with antibiotics. No cold, no flu, nothing else.

Best wishes to all. I will be back if SLE returns. I think of you all often. style_emoticons/<#EMO_DIR#>/Thanx.gif for being here for me.

Fran

PS For those anticipating Rituxan, you might like to know that I have had no lasting side effects from the treatments.

hazel595
06-17-2006, 11:07 AM
Hi Fran
So happy to hear that you are doing well and that the rituxan treatment worked for you.....well done for reporting backhow it has helped you as I know a few ladies that are not sure about taking rituxan xxxxxx hazel

Raglet
06-17-2006, 12:51 PM
lucky you not to have any side effects ! I have just found out about the 'other face' of rituxan.

anyway, i am so glad that it has been a great success for you, hope you continue to do well

raglet

mumsy613
06-17-2006, 01:16 PM
Oh, Raglet. You were one always there for me. Do you mind if I ask what happened? I might have to do this again...fingers are crossed.

I want you to be well. ~F

Raglet
06-18-2006, 09:44 AM
Fran, if someone is going to have an infusion reaction like I did, it usually happens on the first treatment, which gives you a great chance of doing just fine. I was not able to continue with the infusion due to bronchospasm ++ that hit two hours into the infusion.

Here is a link to a post about it

Link (http://www.thelupussite.com/forum/index.php?showtopic=29490&hl=)

after a year of struggling to get approval for rituxan, they had to throw a $6000 bag of it away.

good luck with the rest of your treatment

raglet

lazylegs
06-20-2006, 12:32 AM
Thanks for the update Fran. It is great to hear that the good results have lasted so long. I'll be crossing my fingers that the new B cells are clean ones.

Take care,
Lazylegs

specialk16
06-21-2006, 02:44 PM
Fran!!!!!! What great news. Glad to hear that you are doing so well. I too have had nothing but good results from my treatments. It was nice of you to pop your head in and give us all an update. style_emoticons/<#EMO_DIR#>/hide.gif Best of luck to you in the future, stay well style_emoticons/<#EMO_DIR#>/smile.gif .

Love and Hugs style_emoticons/<#EMO_DIR#>/wub.gif

mumsy613
06-23-2006, 09:03 PM
<div class='quotetop'>QUOTE(specialk16 @ Jun 21 2006, 05:44 AM) Quoted post</div><div class='quotemain'> Fran!!!!!! What great news. Glad to hear that you are doing so well. I too have had nothing but good results from my treatments. It was nice of you to pop your head in and give us all an update. style_emoticons/<#EMO_DIR#>/hide.gif Best of luck to you in the future, stay well style_emoticons/<#EMO_DIR#>/smile.gif .

Love and Hugs style_emoticons/<#EMO_DIR#>/wub.gif [/b][/quote]

Wow. That is what I was hoping to hear. I guess I am just so happy with my own success that I want it for everyone. I am so glad you are better. Hugs to you too. Fran

mumsy613
06-23-2006, 09:23 PM
Dear Raglet,

How awful. That was miserable, I am sure. I had the same experience.

I got about 20% Rituxan on the first aborted treatment. They gave me steroids, adrenalin, and antihistamine by IV to quell the reaction. I had to stay put for four more hours to make sure it did not flare up again. I went home with adrenalin and high power antihistamine.

They upped the methylpred to 225mg, and the benadryl as well....don't remember how much, and started over the next week. So I got the full 4 weekly treatments plus the first 20%. They kept an emergency pack on my IV stand for the rest of the treatments.

It was not too scarey for me since I have been there with other drug allergies. Plus, I was 50 ft away from the university hospital emergency room. There were no more incidents however. The rest of the treatments went off without any problems at all.

My infusion center saw the reaction welling up, and shut it down immediately. They paged my Dr. who told them to abort the treatment rather than try to manage the reaction. It is a shame to have to toss out all that money though.

I hope you get a second chance at it.

Hugs, Fran

Raglet
06-24-2006, 12:26 AM
problem with me was thata they had already increased my symbicort for some a week, plus had me on 40mg pred for some days prior and also given me 500mg methylpred plus iv antihistamines imediately prior to the rituxan, so I was very loaded full of anti asthma drugs (I have asthma). It took another 24 hours to get the asthma attack undercontrol, it was pretty savage.

Basically they are doing the same run up protocol next time (same steroids, antihistimines etc) but the advise they have had was to dribble it in very slowly over 24 hours or more if necessary. The company who manufactures it and the oncologists who are more familiar with its usage say that usually they can get in in if they just dribble it in very slowly.

i don't usually have allergy problems to drugs - wow, i am amazed that you were able to go home within 4 hours, despite all the emmergency treatment they gave me i also had to have a zillion nebs over the next 24 hours so i had to stay in hospital. then i had to demonstrate that i could hold my oxygen sats without the nebulisers, so that took a bit longer too. actually i am still wheezing

did you desat (have your oxygen levels in your blood bottom out) when you had your reaction ?
got my fingers crossed that all will go well next time (for us both)

raglet

Cleaned up the duplicates for you.
raggedyann

mumsy613
06-24-2006, 07:45 AM
<div class='quotetop'>QUOTE(Raglet @ Jun 23 2006, 03:26 PM) Quoted post</div><div class='quotemain'> problem with me was thata they had already increased my symbicort for some a week, plus had me on 40mg pred for some days prior and also given me 500mg methylpred plus iv antihistamines imediately prior to the rituxan, so I was very loaded full of anti asthma drugs (I have asthma). It took another 24 hours to get the asthma attack undercontrol, it was pretty savage.

Basically they are doing the same run up protocol next time (same steroids, antihistimines etc) but the advise they have had was to dribble it in very slowly over 24 hours or more if necessary. The company who manufactures it and the oncologists who are more familiar with its usage say that usually they can get in in if they just dribble it in very slowly.

i don't usually have allergy problems to drugs - wow, i am amazed that you were able to go home within 4 hours, despite all the emmergency treatment they gave me i also had to have a zillion nebs over the next 24 hours so i had to stay in hospital. then i had to demonstrate that i could hold my oxygen sats without the nebulisers, so that took a bit longer too. actually i am still wheezing

did you desat (have your oxygen levels in your blood bottom out) when you had your reaction ? i am surprised that you weren't in hospital for the treatment, they won't let me have it anywhere except a hospital with a fully equipped intensive care unit (which is why i couldn't have it in the private hospital, it was the intensive care issue).

got my fingers crossed that all will go well next time (for us both)

raglet



<div class='quotetop'>QUOTE(Raglet @ Jun 24 2006, 10:11 AM) Quoted post</div><div class='quotemain'>
problem with me was thata they had already increased my symbicort for some a week, plus had me on 40mg pred for some days prior and also given me 500mg methylpred plus iv antihistamines imediately prior to the rituxan, so I was very loaded full of anti asthma drugs (I have asthma). It took another 24 hours to get the asthma attack undercontrol, it was pretty savage.

Basically they are doing the same run up protocol next time (same steroids, antihistimines etc) but the advise they have had was to dribble it in very slowly over 24 hours or more if necessary. The company who manufactures it and the oncologists who are more familiar with its usage say that usually they can get in in if they just dribble it in very slowly.

i don't usually have allergy problems to drugs - wow, i am amazed that you were able to go home within 4 hours, despite all the emmergency treatment they gave me i also had to have a zillion nebs over the next 24 hours so i had to stay in hospital. then i had to demonstrate that i could hold my oxygen sats for 4 hours without the nebulisers, so that took a bit longer too. actually i am still wheezing

did you desat (have your oxygen levels in your blood bottom out) when you had your reaction ?
got my fingers crossed that all will go well next time (for us both)

raglet
[/b][/quote]


problem with me was thata they had already increased my symbicort for some a week, plus had me on 40mg pred for some days prior and also given me 500mg methylpred plus iv antihistamines imediately prior to the rituxan, so I was very loaded full of anti asthma drugs (I have asthma). It took another 24 hours to get the asthma attack undercontrol, it was pretty savage.

Basically they are doing the same run up protocol next time (same steroids, antihistimines etc) but the advise they have had was to dribble it in very slowly over 24 hours or more if necessary. The company who manufactures it and the oncologists who are more familiar with its usage say that usually they can get in in if they just dribble it in very slowly.

i don't usually have allergy problems to drugs - wow, i am amazed that you were able to go home within 4 hours, despite all the emmergency treatment they gave me i also had to have a zillion nebs over the next 24 hours so i had to stay in hospital. then i had to demonstrate that i could hold my oxygen sats without the nebulisers, so that took a bit longer too. actually i am still wheezing

did you desat (have your oxygen levels in your blood bottom out) when you had your reaction ?
got my fingers crossed that all will go well next time (for us both)

raglet

sorry, the editing controls on this board are not working properly - i tried to edit out saying i was surprised you weren't in hospital (I see that you were) but it just kept putting a quote in


aaaarrrrgggghhhhhh !!!!!!!! [/b][/quote]


Dear Raglet

Some days are just like that (editing controls). At the risk of scaring the heck out of others reading this, I must say our reactions are rather rare. In the proper setting, these reactions are controllable.

I was in the hospital, but in the Cancer Center infusion room. They infuse Rituxan routinely for lymphoma patients. Most of the folks in there with me were looking at a much more desperate future than I. I was not the only person there on rituxan iv that day.

I am allergic to penicillin, naproxan sodium (rules out using any of the NSAIDS), aspirin, and cephalosporin antibiotics in general. They all send me to the hospital in dire straits. I don't have much of an asthma reaction however. I flare bright red all over, my entire body swells, my throat and airways close, and blood pressure drops. That all happens in about 2 minutes. Living on the edge. style_emoticons/<#EMO_DIR#>/sorry.gif Just recently, I flared up with fentanyl patch...so I can add that to the list. I had to peel the thing off and go through opioid withdrawal with no taper...not pretty.

My blood O2 was already extremely low from SLE pneumonitis (I did not exchange oxygen very well). I had a driver take me home, so I was not alone when I left. Also, because of my other drug allergies, I have a closet full of meds for emergency use with allergic shock....can't wait for the ambulance!

I had been on 60mg pred for weeks going in to this spiked with 1000mg pulses....plus max doses of Imuran & Plaquenil. Shudder. After treatments, I tapered off the Imuran and Plaquenil rapidly. I just finished tapering prednisone two weeks ago....it took a long long time.

My first full treatment was dripped over 10 hours, then each of the others was tapered faster until the last one was finished in three hours. The nurse began each session with a slow drip and turned it up every half hour throughout the treatment. I must say that the nurses watched me like a hawk, and I was hooked up to monitors. I had no problems at all after the first little mess. style_emoticons/<#EMO_DIR#>/ok.gif

I am hoping to hear all has gone well for you, and that you are feeling better. You had a wild time of it. It is definitely your turn to be well! style_emoticons/<#EMO_DIR#>/smile.gif

Best Wishes.....Fran

Raglet
06-24-2006, 11:36 AM
sounds like we had different reactions if i am reading things right (I agree, reactions are rare, but it is so nice to talk to someone else who had one !) - mine was bronchospasm, which an 8% incidence of happening (which means that there is a 92% chance of it NOT happening, just to reassure others). but i didn'thave any swelling or anything like that, I just had a big asthma attack and i desated, also heart rate shot up and they kept telling me heart beats done lie (i thinki was still telling them i wasfine). but the next sday i think that they told me that i had become ver yflushed, but really i dont recall that. i do have asthma, but with everything onboard and particularly that 500mg pred just prior then i shouldhave been ok. just keeping myfingers crossed for next time cozo they tell meif I have anymore bronnchospasm then they will abort again.

it all just so exhausting though, trying to get through a big asthma attack an d wanting desperately to stay on the stuff that is causing it is just such hard work.
got my fingers crossed, they tell me next time i could be better coz there is a higher rate of infusion reactions in the first infusion, but htne again seeing mine was bronchospasm I could have become more sensitised to it. wait and see really

raglet

mumsy613
06-24-2006, 07:21 PM
Raglet

I was going to check out of this site a few days ago, but now I want to know you have an easier time of it. I also want to know that after all is done, you will be well again. So, keep us posted!

Breathe easy!
Fran