Discussion in 'Rituximab: News and Research' started by dsdmom, May 24, 2013.
Well..... you are not the only one that has done some heavy duty soul searching and bank account searching and has made the decision to throw up the white flag now that I am due for my 5th infusion. I am about a year into this and the similarities are AMAZING...
I was desperate as well and took the very scarey decision to have a chemical dripped through my veins on the slim hope that I would be in the responding group.... well NOT!! My main complaint is PAIN... and I will do damn near anything to reduce it....but to my dismay my PAIN has INCREASED and my pain med intake has DOUBLED since starting on the Rituxan.... ;( ;( ;(
I also had a slight improvement in the OI symptoms and a few days of better energy...but looking back I had those normally.... I also have a bladder that is sooooo inflammed that I now that I have to take the OTC bladder product to keep the pain under control..it keeps me awake at night... So I have literally ADDED a new PAIN... Ohhhhhh yipppppeeee...
And the real insult to injury??? About $7,000 k from infusion fees, bloodwork, travel and hotel - POOF GONE!!!! Just POOF!!! I have had a lot of FRIKKIN POOFS!!!!!
So,,,,then I decided to try Valcyte and that was like eating RAT POISION... Spent almost 3 weeks on the couch in a semi catatonic state.... SCREW THAT... I am DONE DONE stick a fork in me DONE....
NO MORE DRUGS for now...and I too am now going to focus on rebuilding what I have destroyed with the chemo and clean OUT... and try to settle in and try to enjoy a little of the life I have left.
I bought a new rebounder which does not have metal springs..has bungee cords which is much easier on the spine and knees.. Google THE MANY BENEFITS OF REBOUNDING...and you will see how powerful it is for building the immune system and cleaning out the lymphatic system. www.jumpsport.com And it is an exercise that us sickos can DO!!! Even if you just do the health bounce where your feet don't leave the mat.
I also tried a new product called Immunocal and it made me feel about the same as the Valcyte, and it is natural and not all of the scarey side effects or risks. I read an article by Cheney from a few years back where he states that Immunocal can kill the viruses inside the cell. So what hey...it is natural and gonna do about the same thing from what I can see...but what the hell do I know?
Also as a side note... I took the Rituxan because the theory is that the B Cells are infected and by wiping them out over and over the immune system may reboot!!! Sooo I have wiped my B cells out now 4 times they don't even register... Then I go on Valcyte and get deathly sick on ONE stinkin pill a day!!! Now.....I ain't no scientist but if the infection is in the B Cells and those are gone...then why the heck did the Valcyte make me so sick?
Sometimes I feel like we are playing that game where you take a mallet and wack the head that pops up...then a new one pops up... These viruses, bacteria, fungus all trive together and work together...and we go after one of them and the others surface.... After 40 years of this Fn insanity I am feeling pretty defeated....
Another plan is I am going to Interview Dr. Madill in Sebastabol California. He is VERY up on the BRAIN and its involvement in this illness as written about in Dr. Goldsteins book BETRAYAL of the BRAIN... His theory is that the infections have damaged the Limbic system of the brain....causing it to misfire and send out inaccurate signals in regard to pain, autonomic dysfunction, etc etc... The idea will NOT go away and Dr. Madill is the only doc who I have found that is up on Goldsteins work. If you know anyone else let me know of if you have any info on Madill let me know... I will post here after my appt which I will make in the next month and let u know his thoughts!! I often wonder why all of us have symptoms all over the map....??? could it be because different areas of the brain have been hit, damaged, and disregulated??? Pfffft like I said, what do I know?
I am also working on Methylation with the supplements.
Sooooo REBOUNDING, Immunocal, Methylation, Detoxing, and possible brain tuning are my focus until I hear of something that makes SENSE...
I am with you Dsdmom.... I am OVER bein a guinnea pig!!!! For 6 mo anyway.... lol
Thank you for posting... makes me feel like I am not such a "quitter"! I gave it damn near a year and my inner voice said STOP... oh and btw so did my boyfriend!!! He is gettin pretty much OVER this crap too!!
What are you doing for your bladder pain...??
Hugs to all.....
* Oh and PS to those of you who are considering Rituxan...if you fall into the PAIN syndrome category my opinion is DON'T do RITUXAN!!! I asked my doc if I was the only one responding with an inflammitory BOMB response...and his reply was "No that those who have the pain syndromes are experiencing this".... Wish I would have known that before throwing 7K out the window! Guess I get to be rich in my next life.... ;(
I had a major crash about 3.5 years ago, I was in massive pain 9 to 10 on a 10 scale. I had lidocaine infused into my blood stream, and it knocked down the pain 2 to 3 notches. FYI
How long did that last...and finding a doc who will do it is the next hurtle....
Jacque, Sorry to hear you are struggling with so much pain. Making the decision to stop is not easy when we want to fix what is wrong but I believe we each need to listen to our bodies. I absolutely felt like I had an enormous inflammatory response to Rituxan. FINALLY my stomach issues are subsiding - but it's been several months, lots of unnecessary tests and no answers. Just felt like I was on fire.
Luckily my bladder issues subsided....but had I continued with Rituxan I might still have them - I don't know. We are such a heterogenous group so it's so hard to say who is going to be helped by this. I still hope that some are! I just have yet to hear of any amazing responses like those from the Norwegian study. Heard of a couple people doing a bit better but based on the side effects I had, it's not worth it for me.
Jacque google dr mariano he has similar ideas to goldstein but has expanded on them. He is also very much into hormones as well. I think he even wrote something on goldstein saying he was way ahead of his time.
Yah well in the beginning I thought I was doing better and so did you and then we gradually slid further and further into the inflammitory abyss... I know I was truly blinded by enthusiasm and optimism in the beginning.... Someone who knows me well had to remind me that prior to the Rituxan I would have occasional good days or a few in a row... to which I said "oh yah".... sigh I just want to get better... I don't want to know about B Cells, Cytokines, Herxing, blah blah... and Heaps you are sooo RIGHT about an early diagnosis... Had I have been diag with Lyme at age 18 instead of RA... and treated properly...I would NOT be in this MESS today....
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