Fluge & Mella's pre-trial study highlights life-changing potential of rituximab
Sasha gives the background and Simon gives the interpretation of the latest study from Haukeland, published today...
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Discussion in 'Rituximab: News and Research' started by Jacque, Mar 5, 2013.

  1. Jacque

    Jacque Senior Member

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    Daddy always taught me to keep my mouth shut if I can't say something nice... So I have been quiet here for a while on PR... Cuz I am not a Phoenix Rising...I am a Phoenix falling deeper into the abyss of poop...!

    Immune system does not appear to be responding to the Rituxan. My pain levels have increased along with my Norco intake...grrrr And I have gained 6 lbs due to the INTENSE sugar cravings that have come on since starting the Rituxan. I have had a slight improvement in flu like symptoms... But all in all I am not any better and pain WORSE...ugh

    Have 2 infusions to go...

    I used to teach "feel the burn" when I taught aerobics... Never thought I'd have to "live the burn"...ugh

    Still parked on the couch most of the time...

    Soooo now we are adding Valcyte to the mix! And after reading that it is causing cancer in animals I don't know how thrilled I am about that... Is anyone else out there taking Valcyte that can put my mind to rest on that? Feel better - get Cancer... hmmmmm doesn't sound quite right...but I don't know what other options I have right now.

    Soooooo many theories and so few dollars and years left to GET A LIFE!! This little Rituxan adventure will cost me close to 10k once I am done!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Between blood work, lodging, and infusion fees! Yikes... And I didn't even pay for the DRUG!

    Time to RISE!!!
     
  2. RUkiddingME

    RUkiddingME Senior Member

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    Time to RISE!!![/quote]Hi Jacque: Sorry to hear about your abyss of poop :(. . There are at least 6 of us on this forum that I know of who are presently on Valcyte so just look up the word and most of our posts should come up. I've also been keeping a blog called Valcyte 2013 on here. Hope it helps. Desperate times call for desperate measures and trying Valcyte is something I have to do. The chances of getting cancer are high for me with my family history so like someone said on here," I don't care what kills me first cancer or CFS" as long as I get a chance to live a little first. Good luck!!!:thumbsup:
     
  3. Esther12

    Esther12 Senior Member

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    Best of luck with it all Jacque. Sorry to hear that you're not feeling any better.

    Ouch. I just got psycho-somatic pain at that one.

    I know it's a tricky one, but I often think donating money to medical research charities could be a better bet than some of the expensive treatments that are available but really need more testing. ME Research UK gets bits of my cash (honestly, I'm quite selfish and tend to prioritise fun for myself with any spare money I have.... I'd still like to encourage others to give their money away though).
     
  4. Jacque

    Jacque Senior Member

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    Well at least you feel like having some FUN!! I don't even spend $ on that anymore... All I do is feed the Cash Cows!! Moooooooooooooooooooooooo
     
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  5. Jacque

    Jacque Senior Member

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    Hi Jacque: Sorry to hear about your abyss of poop :(. . There are at least 6 of us on this forum that I know of who are presently on Valcyte so just look up the word and most of our posts should come up. I've also been keeping a blog called Valcyte 2013 on here. Hope it helps. Desperate times call for desperate measures and trying Valcyte is something I have to do. The chances of getting cancer are high for me with my family history so like someone said on here," I don't care what kills me first cancer or CFS" as long as I get a chance to live a little first. Good luck!!!:thumbsup:[/quote]
    I will check out your blog and THANK YOU... I am trying to find out how many % of tihe animals got cancer.. All it says on the site is Valcyte causes cancer in animals... and that is it... And I agree with you about which is gonna kill me first cuz I am not long for this world if I stay on this current path. Thanks again
     
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  6. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I think and this is my personal opinion, that the risk of cancer from valcyte is less then the risk of getting cancer from untreated cfs from herpes viruses like ebv/cmv/hhv6. cfs/me have a higher risk of cancers then the general public and that doesnt include valcyte users. Hopefully 12-18 months is all u need on valcyte and then just maintain those gains on another 'safer' antiviral like famvir or maybe just start with famvir??
     
  7. Jacque

    Jacque Senior Member

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    GOOD point Heapsreal!!! I am very aware of that but hadn't looked at it that way... If I go on with these viruses ravaging my immune system...I am sunk anyhow!!!!! Thanks for makin my brain connect!
    Would love to start on Famvir but it is verrry $$$ and my insurance will not cover it nor the Valcyte.... Why are you not on Famvir?
     
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  8. Jacque

    Jacque Senior Member

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    Do you plan to stop the Valcyte or stay on it for maintainence? I would be so not wanting to be a stinkin 3 again ;) MG I would be a scarey person at a 5... at an 8 wow I couldn't even imaggggine!!!!
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    at this stage i plan to stay on valcyte a few months longer but its a work in progress. I also still use famvir as it wasnt quite as effective as valcyte but i think post valcyte, famvir will be enough to hopefully keep it supressed as well as an improved immune system with immunovir, hopefully?? Famvir i buy online, magicpharma has been the best priced but did find another site recently that sells it abit cheaper http://www.pharmacy-orders.com/famvir_generic.php the 90 x 500mg for $200 is a good price but havent ordered from this company before. the dosage of famvir while im on valcyte is only 250mg a day, when i was on famvir only it was 250mg twice a day, this does seem to be a low dose compared to what others have taken but maybe a personal thing too??
     
  10. maryb

    maryb iherb code TAK122

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    Heaps can you say who your doc is? or have you worked out a self treatment plan based on other docs?
    I know you have regular blood work done which is the main worry for a lot of us who try things without medical support.
     
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    My dr is Dr deed in Brisbane, i suppose my treatment plan is based on what i have researched, my doctors experience and we both work it out together i guess. I suppose you can say we are on the same page. He is upto date on whats going on in the cfs/me world with montoya and lerners research etc. He doesnt have set protocols for his patients but does it on an individual basis depending on what tests find, finances and within reason what the patient wants to try. He doesnt force out of the box treatments like antivirals onto cfs/me patients as he realise that its still experiemental but considers it when asked if all the boxes are ticked.

    testing here in australia is limited due to govt cracking down on the expense(generally testing is covered by govt health system(bulk billing) but it is limited) also the quality of testing is limited to as its very hard to get titres measured, generall its a psoitive or negative to igm or igg antibodies. I use to get lymphocyte subset tests done every 3 months but this has been scaled back to only twice a year, anymore and i would have to pay out of pocket, but at the moment this is all i need. My doc does bulk bill many tests for his long term patients but new patients may have to pay out of pocket. He does or did alot more testing then other gp's, which is what we types need but it just puts him in the front line when the govt are trying to crack down on health care budgets and they are getting very serious about all this here in australia.
     
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  12. maryb

    maryb iherb code TAK122

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    Crikey heaps - how lucky are you to have found this doc? My NHS GP just wouldn't even work with a private GP, the system is not geared to the patients needs.
    Your system sounds like the same situation over here, they've spent the money in the wrong places and now trying to claw it back where they can. Something I found out recently was that many hospitals have closed their kitchens down and all food is pre-packed cooked and chilled. How bad is that, the very thing that helps a patient to recover and what they look forward to on a long day on the ward and they treat it like this. Shocking. sorry I ramble....

    Jacque - sorry to hear you haven't seen any improvement, but great that you post, so important for us following you....well not stalking like.

    Hope the Valcyte helps - heaps is right about the cancer risks - and also the amount given to mice was far far above that would be used in treatment. Good luck with it - you're in good hands over there.
     
  13. jstefl

    jstefl Senior Member

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    I took Valcyte for 8 months back in 2007, and it was very helpful for me.

    When I started Valcyte, My blood pressure had dropped to 80/50, and I was taking medication to keep it at a tolerable level. While I was on Valcyte, I was able to wean myself off the medication, and my blood pressure has been good ever since.

    I was having the most terrible headaches before Valcyte, and that was one of the first areas of improvement when I started the Valcyte. I still have headaches, but they are much less painful, and are treatable with Tylenol.

    My periodontal disease even is much improved after the Valcyte.

    I was very fortunate that I was able to tolerate the Valcyte with no problems, and that my health insurance paid for it.

    Valcyte was not a cure for me, but it greatly improved my quality of life. If I had it to do over again, I would have stayed on the Valcyte for a longer period of time in the hopes that more improvements would be forthcoming. I still don't know how long that would be. In the nearly 5 years since Valcyte, none of the symptoms have returned.

    If the Rituxan has not helped up to this point, perhaps you should consider stopping the treatments before they do any further damage.

    John
     
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  14. MishMash

    MishMash *****

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    Hi Jacque,

    You have been through so much, it's terribly disappointing that the RTX did not help as you hoped. It was too bad the Norwegian doctors were only able to do that one study. We all feel sad for you, but hope for better days.

    Try whatever drugs you think may help you. And, after all, it's your money, nobody should tell you how to spend it.

    However, from your comment above it seems like pain is up there, vying for number one, ahead of flu-like symptoms and general CFS symptoms (if you had to list them in order of importance).

    Have you ever thought about trying Ketamine therapy? It is a slightly unusual analgesic narcotic, that works very effectively for patients with "Complex Regional Pain Syndrome". It seems to work on connections very high up in the mid-brain areas, that control basic functions. It seems to restructure the way the mid-brain operates. Treatments involve infusions under a doctor's supervision once every couple of months. It's not like a narcotic you take every day.

    - This Dr. Kirkpatrick specializes in treating pain patients (successfully), some of whom have severe FM, using Ketamine and he has carefully documented his case histories on Youtube (i think there are 45 vids). He seems to be quite succesful. The drug ketamine is 100 years old, so no pharma companies have an interest in testing it, even though it seems to be a game-changer for many intractable pain patients.

    Whatever treatment you choose, good luck!!!!

    https://www.youtube.com/user/dockirkpatrick?feature=watch

    Met


     
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  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    ketamine sounds very interesting as a treatment but that would be harder to get prescribed then an antiviral. Any thoughts on how someone can get treated with ketamine? Any docs u know who are doing this outside of research studies?

    cheers!!
     
  16. I am also not far removed from my 4th infusion. I will say that the month and half after my 4th infusion was the best period that i have had since becoming ill.

    Don't get too down just yet, remember that it can take up to a year after treatment for some people to respond and often the illness will flare up as a reaction to the chemo once the benefits have waned.

    Did you get kind of remission from any of the infusions.

    For me after the third i had about 36 hours where i felt pretty good starting the second day out from my infusion. Then after the 4th i had about a month and half where i could go for 30+ minute walks at night without any issue. Im hoping this kind of exponential improvement continues, but we will see. This illness makes optimism seem foolish at best sometimes.

    Hope things improve for you,

    M.
     
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  17. Jacque

    Jacque Senior Member

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    I thought at times I was feeling better and had a few bursts of energy...but as my good friend pointed out I did that before going on Rituxan... lots of ups and downs... So all in all no remissions at ALL... just fewer fluish symptoms and better attitude after finding Dr. K and being taken seriously. But now I am no longer feeling that way as I feel like a real pain to him and the office...with my continuing issues and frustration from not being a "responder"....so to speak. I am adding the Valcyte to the mix here soon so stay tuned. I have two infusions left and just not sure if I want to do it any longer... It is really messin with my blood sugar... have you noticed that? or worsening of your brain fog??? Man mine is off the charts now... Thanks for the inspiration... Jac
     
  18. ukxmrv

    ukxmrv Senior Member

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    Jacque, there must be lots of you at his office who have not responded to Rituxan. It's a test of a doctor how he deals with his "difficult" patients and not his easy ones!
    You've had this awful disease for a long time now and deserve help and respect. Sounds like Dr K has not given up on you. He may know if it is worthwhile continuing.
    I'd still like to try the Rituxan and the Valctye if I was ever in that position.
    We don't have a cure yet and for some of us it's a long and expensive journey to try and find relief. I'm having a really crap day recovering from a stressful and disappointing doctors appointment so count myself in that group as well.
     
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  19. Jacque

    Jacque Senior Member

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    Yah he hasn't given up on me...that is for sure... and no I am not alone in the NON responders... I am tossing around whether to go on the Valcyte or Famvir at the present moment. At least he is open to that ... I just wish I would have started with those and then if no response then on to the Rituxan instead of the $$ way u had we did it...

    Sorry to hear you had a CRAP day... So much CRAP, Poop... Sh** flyin around huh...? If people only knew what we deal with every minute of every day! They might treat us like really "sick" people and bring us a casserole!! Or a hug? What was so disappointing about your Dr. visit?
     
  20. Actually i would say that the brain fog is the area where i have experienced the biggest improvement. Mine is, if not gone, sooooo much better. I can read books again, which is big for me. I think its worth mentioning that I am young, haven't been sick a wildly long time compared to others, and my brain fog has been really bad at times, but my symptoms are more of the fatigue variety.

    The blood sugar thing though, i 100% relate too, i can't deal with sugary foods anymore. I feel diabetic if i so much as have a bite of anything too carb heavy without balancing it with tons of veggies, protein, etc. I have found that staying away from corn based carbs really helps, but that may just be me?

    As far as your doc not responding to your needs, that sucks, im really sorry. Nothing is worse than feeling as though the people in charge of your health aren't invested in your improvement, but rather their reputation. That is something that this illness has done to me, i have almost no faith in the heart of the medical community. Too many people who would rather be right than see their patients get well. If the two coincide, great, but if they have to pick one, they will choose their reputation over your well being every time.

    Hope things improve for you.
     

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