[IBDOROTHY]

peta i hope your 2nd treatment goes well. after united healthcare refusing to pay for the rituxan the genetech, the drug company is going to pay for a year of the treatment since i fall within their financial limitations. my rumy has been trying to get this since 07-06. i have also been on all the other meds. my thought process really sucks at times and i have problems with "word finding". this just means that i stutter and look foolish. the lupus does something wacky with my brain and i take loads of lunesta (12mg), rozeram, lyrica and sometimes valium and will sleep sometimes 4-5hrs and at times can be awake for 45 plus hours. i am not overweight even though i have been on steroids since 06-2004 and have my 2nd sleep study friday. the last one was nothing conclusive and they wanted to sell me a machine and said i was 'borderline' sleep apnea. i told them that i believe that meant i slept at some point and walked away. i have seen 4 neuro and they are clueless as to why. sorry, this was not meant to be a 'bitch fest' for me.
i am somewhat worried about my first dose of rituxan and if you got really sick after words. the range of side effects vary so much and i am sure that i have been sicker since i normally flare for 7-9 months out of the year. **** always starts in may and it has been this way since 1996 and lasts until i recover in october. boy i sure hate the summer.
maybe things will be better this year with the rituxan. i hope so. i think lazylegs mentioned she has had rituxan. anyone with suggestions or advise would be greatly appriciated.
i know the thought stuff can be really frustrating. i just know that when i am really sure of something that means i had better recheck it. sometimes i find myself saying "joyce, i cant believe you just did that" and then i laugh and say "i sure as **** can believe you just did that".
i try and make lists, know what my limitations are "now" and remember what Tom Petty says "you can look back babe but it is best not to stare".

 

[Clare.T]

Hello Dorothy

I moved your post to start a new thread so your questions are far more likely to be noticed by those who have taken Rituxan.
I really hope it will help you as it has so many others, some almost miraculously improved. Of course it hasn't worked so well for others as is always the case with any medicine.
Let us know how you get on and the very best of luck to you!

Cheers
Clare

 

[flutterbye]

Good luck with your rituxan treatment, I hope that it all goes well for you. I also had to wait a long time between my consultant wanting to try this, and the funding being sorted so have an idea of what you must have been going through.

Hopefully to offer you some optomism for the treatment it has been trully marvellous for me, in particlular with the CNS symptoms, which were absolutely limiting my life to a great extent.

Two things that I remember from when I started the treatment, it doesn't kick in straight away, I think I remember thinking that it had not helped until about six months after the first set of treatments. I don't know why technically, but I think of it as once the B cells have been wiped out a sort of slowing down of lupus activity. Then I think things got a whole lot better quite quickly.

As far as reactions or side effects, I believe the most common thing is to react whilst having the infusion, an allergic reaction, I have only once experienced this, a swelling of the throat, when they just decreased the rate of infusion, I know that other people have experienced more severe allergic reactions during infusion. As to side effects after the treatment, I think they are few really, I do find that after treatment I am pretty shattered for a couple of days. Sometimes I have steroids infused at the same time, and these often help me really quickly.

I hope that things really start to improve for you with this treatment, and that if it helps that you will be able to access more treatment as needed, I'm guessing you are in US so don't know about your system of healthcare.

Oh and if it gives you some hope I was retested for CNS difficulties I think eigteen months after starting rituxan, (now I recieve a treatment every six months) and the differnce in all areas they looked at has improved beyond what I could have hoped for, and has made the most immense difference to me, after being on every other treatment previously.

Good luck, and hope to hear how you are doing xx

 

[Reggie]

Good luck with your rituxan treatment. I hope it works well for and gives you relief from your symptons. I am having my 2nd lot of rituxan on Monday and not really looking forward to the treament, But very hopeful that it will give me some relief or least my cognition back so I make sense to everyone.

I wish you all the luck in the world:rotfl: :rotfl:
Peta

 

[lazylegs]

Congratulations on getting the Rituxan. I hope it works for you as well as it does for me. When is your first infusion?

The only side effects I had were during the first hour or so of the first infusion. I had a temperature, sore throat, chills, flu type symptoms easily controlled by aspirin. Since then I have had no problems. That first night I had difficulty sleeping due to the steroids administered along with it. Afterwards I had extreme fatigue for a couple of months. With each successive treatment the fatigue has decreased. My body also responds more quickly to the treatment.

Rituxan didn't take care of all of my symptoms. It did take care of all of the "normal" Lupus symptoms. My bloodwork is beautiful. The speech and cognitive issues went away and it lessened some of my other neuro things. It is disheartening when the symptoms start creeping back, but any reprieve is wonderful

Good luck!

Take care,
Lazylegs

 

[IBDOROTHY]

thank you all for your time responding to my questions and concerns. i believe or an hoping to have my first infustion the week of april 7th. i will be pleased with any reduction of my symptoms. i did not leave the house from wed at 2pm til mon at 630am for work (where my computer is). i dont need to tell any of you of what this lupus fatigue is like. i so used to beat myself up for that, thinking i was lazy or not putting enough effort into being present in life but though trial and error learned that not listening to my body can have a high price to pay for weeks. i did hope the drug would work sooner my ra thought i might see some results after the 2nd infusion. i will know for sure when june arrives because i flare to the extreme from then until sept or so. at least that has been my summer for the last 11 years. again, thanks for being here, there and everywhere for me

 

[IBDOROTHY]

well, as my friends fondly refer to it, the "big drip" has been scheduled for the 14th of april and then the 28th. hopefully, side effects will be minimum since the insurance will not pay for the medication or the infusion. the dr is going to work with me on the infustion cost.
i wanted to pass on some information since i know that my dr battled with united healthcare since 7-2006 to get rituxam approved. finally, dr went through the back door and contacted the drug maker. they agreed the med could prove helpful for my condition since we have tried every other drug including the other 'chemo' type drugs. my letter said "approval will remainactive until therapy is discontinued, the patient obtains insurance coverage or the patient is no longer eligible". I had to provide my 2006
tax documents proving that i qualify. i believe for single it was less than
$75,000 and couples was $150,00.
here is their information: genentech - access to care foundation
866-681-332. they have been very helpful and always returned my calls.
i hope this information provide useful to any of you that have struggled with all the other medication(s) and have had their insurance company refuse to pay for the rituxam because it has not been fda approved for any of our conditions other than ra.
take care and you all are in my prayers.
if this is not at the right 'site' i apologize