Throwin up White Flag on Rituxan Also! :(

[beaker]

I think I have IC now....and yes prob from a shit ton of treatments!!! Thanks for the smile!!!

You may wish to check out The ICA site : Interstitial Cystitis, IC, Bladder Pain, Urgency, Frequency, Hunner's Ulcers
They have a lot of good info, and there are now many good docs that treat. -- you may be able to get a referral through a good doc list or through a member near you. It is a nasty disease all by itself , and has degrees of severity just as ME/CFS. I spent a couple years sleeping on the floor of the Bathroom. Interesting that yours was triggered by Rituxan -- mine was triggered by alpha interferon. All immune stuff.
Hope you find a treatment to get that under control. Some things work better for some people. Well you've heard that before, eh? Best.

 

[Seven7]

In my case, anything that was gonna work Never made me worse first. It was indifferent at first then better, or better inmidiately, even if it caused small crashed, once recovered I would be better than when I started, so always continual improvement, I always started low and slow.

I am sorry but I do not agree to keep taking something that makes me worse. Thank you all to the brave people who try the hard stuff for us.

 

[Jacque]

Well I thought that knowing all of the risks etc of trying the Rituxan kinda went without saying.... We all know it is a gamble, a roll of the dice. I have had quite a few people contact me personally to ask how I am doing on the Rituxan and I hesitated to respond, knowing we are all so different! We are all like rats scampering around looking for our CHEESE...and I didn't want to discourage anyone, knowing that Rituxan might be their cheese! I knew all of the risks when I had that needle put into my arm,... but I never entertained the thought of having my pain INCREASE and having to go from Norco for Pain to a prescription of Oxycontin...and I didn't know I would I would end up with an intense bladder issue, that now adds to my problems bc I am up 6-7 times a night to pee. ugh

This is just my PERSONAL experience... Rituxan might be your CHEESE... But it is has been a very discourging lesson for me... that there is currently no magic treatment out there for this disease....and I am gonna put on my patience hat and wait on the research...while trying to build up what I destroyed with the Rituxan.

And my only word of advice again is if you fall into the PAIN syndrome with this mess... I would really think twice about Rituxan...

And that is just my ONE CENT....worth of advice....since I don't have TWO CENTS left!!! grumble

 

[heapsreal]

I think its good to hear negative treatment experiences, helps give people more balanced feedback.

I think with treatments that knock part of the immune system out like ritux is more of a gamble if u have bacterial co-infections. Even valcyte lowers certain parts of the immune system like neutrophils which are needed to fight bacterial infections, maybe why my sinuses have been hard to treat?? Dr Lerner has mentioned this a few times when he has people not responding to antivirals etc. Maybe there needs to be a certain order of treating these infections too???

So many sub groups then we realise i think with this illness. its like a poker machine where u have to line up the correct abnormalities, virus, bacteria, hormones etc etc. pull the handle and see what happens??

 

[Jacque]

You are so right heaps... I feel a cartoon coming.... of someone pulling the slot machine and all the icons lining up....then you start the head bopping game... bc in my experience when I bop something on the head...something else raises its ugly head and it is an endless cycle...

 

[Jacque]

You may wish to check out The ICA site : Interstitial Cystitis, IC, Bladder Pain, Urgency, Frequency, Hunner's Ulcers
They have a lot of good info, and there are now many good docs that treat. -- you may be able to get a referral through a good doc list or through a member near you. It is a nasty disease all by itself , and has degrees of severity just as ME/CFS. I spent a couple years sleeping on the floor of the Bathroom. Interesting that yours was triggered by Rituxan -- mine was triggered by alpha interferon. All immune stuff.
Hope you find a treatment to get that under control. Some things work better for some people. Well you've heard that before, eh? Best.

Oh God the last thing I want to do is read about another disease....ahhhhhh Please just let this new addition just GO AWAY... I have even been having bladder spasms lately... fun times... And having to get up 6-7 times a night has got to stop...

 

[heapsreal]

like already mentioned all treatments for us are a gamble, even if we sign consent forms etc and understand the risks involved , but we all hope not to be one of those people who get side effects or dont respond etc it can be soul destroying. its not very empathetic or compassionate to say, you signed the consent forms, deal with it.
i think it shows how desperate we are to get better.

cheers!!!

 

[Jacque]

If the Rituxan is paid for, wouldn't insurance cover things like infusion costs and lab tests?

Many of us are just stuck with travel costs because there are no specialists anywhere near us. Medical insurance doesn't consider that (sometimes substantial) cost.

I spent my money on Valcyte for two of us. It was definitely worth it -- remission for daughter and big improvement for me. If I had the money and the access (no one anywhere near me prescribing it), I think I'd try Rituxan, even knowing it might not work.

My insurance would not even cover the blood work he requested bc they did not think it was necessary. Dr. K orders some very advanced tests and they would not cover it or the infusions....

 

[Jacque]

I think its good to hear negative treatment experiences, helps give people more balanced feedback.

I think with treatments that knock part of the immune system out like ritux is more of a gamble if u have bacterial co-infections. Even valcyte lowers certain parts of the immune system like neutrophils which are needed to fight bacterial infections, maybe why my sinuses have been hard to treat?? Dr Lerner has mentioned this a few times when he has people not responding to antivirals etc. Maybe there needs to be a certain order of treating these infections too???

So many sub groups then we realise i think with this illness. its like a poker machine where u have to line up the correct abnormalities, virus, bacteria, hormones etc etc. pull the handle and see what happens??

And Heaps I don't even see it as "negative" response...it is just what happened to me...and I like to keep it REAL!! I haven't seen any positive responses on the PR site as of yet... Seems those here either didn't get any better or got worse...from what I have read... Am I missing out on posts by those doing better? I am not on here that often.

 

[IreneF]

I got better. It hasn't been a long-lasting better. I did not suffer side effects other than a minor infusion reaction the night after the first infusion.

 

[heapsreal]

I got better. It hasn't been a long-lasting better. I did not suffer side effects other than a minor infusion reaction the night after the first infusion.

u get it through dr K? are u on av's as well or if not do u think av's could have helped u keep your gains??
i mention this as i think it was drK looking at doing a study with both treatments at the same time?

 

[SOC]

My insurance would not even cover the blood work he requested bc they did not think it was necessary. Dr. K orders some very advanced tests and they would not cover it or the infusions....

That's too bad. Not surprising, I suppose. Insurance companies don't want to spend any more money than they're forced to. I don't, either.

 

[IreneF]

u get it through dr K? are u on av's as well or if not do u think av's could have helped u keep your gains??
i mention this as i think it was drK looking at doing a study with both treatments at the same time?

Yes, thru Dr. K. I was on valcyte a few years ago. I didn't have a chance to talk w/him last time I was there about either combining drugs or continuing the ritux. Or something completely different.

 

[IreneF]

I haven't talked too much about my experiences for a couple of reasons, one of them being that the course of treatment takes over a year, and the effects can be delayed. Another was not to feed any negative publicity from outside PR.

 

[SOC]

I haven't talked too much about my experiences for a couple of reasons, one of them being that the course of treatment takes over a year, and the effects can be delayed. Another was not to feed any negative publicity from outside PR.

Thanks for that, IreneF. Best we get complete and final results before too much speculation takes place.

 

[Kati]

I apologize if my comments were seen as insensitive. What I had in mind was the greater good. I am still maintaining that patients need to be appropriately informed about the treatments they are choosing and about the risks involved.

 

[Young&sick]

Ahh, shit, sorry to hear its gone so poorly for you. I have seen some definite improvements, but im not even close to being back to my pre-illness state. I don't know if i just tolerate the drug well or if by now im just numb to feeling terrible, and its just kind of the accepted status quo for me.

I just enjoy the walking i can do now, and if anything i just hope this treatment will slow my fall down the well of health problems brought on by this illness. If it doesn't cure me, maybe it can keep me close enough the surface that i can still grab the rescue rope when science gets off its ass, takes us seriously, and tosses us a lifeline.

I have done five infusions, and will keep going through the sixth, for better or worse.

So sorry. Hope things get better.

 

[Sherlock]

Jacque If it makes you feel any better, your B cells are likely still depleted from the previous infusion and so one more infusion wouldn't have made things any different. It would have just been a pure waste.

 

[Jacque]

Thanks for that Sherlock... You a prob right in MY case... only in my case it would have no doubt created more and more inflammation..which I couldn't even phathom doing to myself right now... I have to admit Sherlock that my B Cells register at Zero and I get on the Valcyte and practically go catatonic on the stuff... Which set the wheels in motion... of .... if the problem is truly infection in the B Cells ... and mine are wiped out 4X... then why such a drastic sickly reaction to the Valcyte. It was either killing something...or activating something - which was STILL VERY MUCH THERE.... sigh

 

[Jacque]

I apologize if my comments were seen as insensitive. What I had in mind was the greater good. I am still maintaining that patients need to be appropriately informed about the treatments they are choosing and about the risks involved.

I DO feel that I was appropriately informed and Dr. K explained the risks involved. (but I was not really clued in on how much $$ it was going to cost me) Like I said when I had that first needle put in my arm I knew all sorts of things could happen and it took a lot of courage, as many know. I just didn't know that I would be perceived as "negative" or against any "greater good"...by finally expressing my experiences on Rituxan here on PR. Quite a few people have contacted me about my experience and most I just didn't respond, knowing that their experience might be a lot better than mine. But I have come to know now that I am not alone in the increased inflammitory response hell and know we are here sharing our experiences. There will be the good, bad, and the ugly... and I think info on ALL responses should be looked upon she same... As they are all a part of the beginning stages of research.. Do the people who have the bad or ugly experiences just fade away and say NOTHING? Like I said I wish I would have read any posts regarding pain syndromes getting worse as well as the cost involved before making my blind leap of faith. From now on I am gonna leave the guinnea pig stuff up to rich people...and hope they post their experiences whether they are GOOD, BAD, or UGLY on all treatments in the future, to help all of us make educated decisions.