tag:blogger.com,1999:blog-22576999.post6397499688827313230..comments2024-03-28T17:38:39.157-04:00Comments on Live With ME/CFS: Rituximab - A Promising Treatment for ME/CFSSue Jacksonhttp://www.blogger.com/profile/14532098225905355332noreply@blogger.comBlogger30125tag:blogger.com,1999:blog-22576999.post-22428172602403956802016-10-31T14:13:40.944-04:002016-10-31T14:13:40.944-04:00You'll have to ask them that. I don't know...You'll have to ask them that. I don't know how their new study will work - I don't even live in the UK! If you are interested in their study, contact them & ask about it. Just remember this is an experimental treatment that may have significant risks so be sure to ask about those, too. Good luck!Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-84429340631981108902016-10-30T13:16:10.514-04:002016-10-30T13:16:10.514-04:00IF I can get it via "InvestinME",will I ...IF I can get it via "InvestinME",will I have to pay for it? I just live on state sickness benefits...Tiredchris UKhttps://www.blogger.com/profile/03799575940297893083noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-42882916828100363802016-10-30T13:14:27.254-04:002016-10-30T13:14:27.254-04:00I tried a build-up dose to 4.5ml's,daily,since...I tried a build-up dose to 4.5ml's,daily,since 1st April 2016.I pay for it,privately,through "Clinic 158" in Scotland. NO good effects,NO bad effects... :(Tiredchris UKhttps://www.blogger.com/profile/03799575940297893083noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-22073316202086313952016-10-29T16:24:01.201-04:002016-10-29T16:24:01.201-04:00Sorry to hear that LDN hasn't helped you. What...Sorry to hear that LDN hasn't helped you. What dose did you try? Did you feel any worse or just no different?<br /><br />As for Rituximab, it is not generally available at this time for ME/CFS - it is still in the experimental stages, as I describe in more detail in this post. The UK is hoping to start its own Rituximab study soon, though. That is being done through Invest in ME so you might contact them to see if you can get into the study.<br /><br />Be cautious, though, because Rituximab has some major risks, as I mentioned in this post.That's why most doctors are waiting for more extensive research, to help identify who will respond to it and who it will harm.<br /><br />In the meantime, while we wait for that research, there are plenty of other, well-tested treatments that might help you without the big risks. Here is a summary of what has helped my son and I the most:<br /><br />http://livewithcfs.blogspot.com/2015/08/effective-treatments-for-mecfs.html<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-54684083385039295732016-10-29T06:03:00.770-04:002016-10-29T06:03:00.770-04:00I've been on LDN since 1st April 2016 & I ...I've been on LDN since 1st April 2016 & I Han't felt Any different,whatsoever... :(<br /> Where,in the UK,can U get rituximab in the correct dosage for CFS?Tiredchris UKhttps://www.blogger.com/profile/03799575940297893083noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-16162697730726345912016-04-24T14:33:12.904-04:002016-04-24T14:33:12.904-04:00I'm not familiar with that medication, but I&#...I'm not familiar with that medication, but I'm sorry to hear you are having trouble getting access to it again. Have you tried low-dose naltrexone yet? It's a super low risk med (used in tiny doses) that works well for most immune disorders - the studies using it for Crohn's have been amazing! Good luck.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-92208099887060088022016-04-21T18:39:37.944-04:002016-04-21T18:39:37.944-04:00In the late 80's, early 90's I was on 6-me...In the late 80's, early 90's I was on 6-mercapopurine for Crohn's Disease and felt better than I had in years even returning to work but I stopped the medication after surgery to remove my colon and the effect faded over 2 years. The trouble is finding a doc who'll let me try it again.rglaterhttps://www.blogger.com/profile/06789470688775106062noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-8173339897471438702016-04-21T09:59:45.279-04:002016-04-21T09:59:45.279-04:00Hey Sue!
I've just managed to start reading y...Hey Sue!<br /><br />I've just managed to start reading your blog and as an ME/CFS suffer I've found reading this so useful! I've just started to blog about my ME/CFS, the link as at the end of this comment!<br /><br />Keep up the fight!<br /><br />Love, Cat xxx<br /><br />http://catsrecoveryjourney.blogspot.co.uk/Anonymoushttps://www.blogger.com/profile/13766357757336786884noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-78853108017185813302016-04-20T11:40:22.859-04:002016-04-20T11:40:22.859-04:00That's a very good point, Mary, especially for...That's a very good point, Mary, especially for this complex disease: we need to support research & availability of any and all treatments. I often say that nothing I've tried (and I've tried a lot of things!) has helped a lot but many treatments have helped a little, and those little bits do add up. We need all the treatments we can get!<br /><br />SueSue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-86349636077355593152016-04-20T08:43:06.852-04:002016-04-20T08:43:06.852-04:00No! That's the exciting part - if you re-read ...No! That's the exciting part - if you re-read my post above, you'll see in #3 that many of the patients are still symptom-free 5 years after their initial treatment! It's a matter of "re-setting" the immune system.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-22966723996107770512016-04-19T20:09:36.962-04:002016-04-19T20:09:36.962-04:00I respond very well to Ampligen, but the FDA can a...I respond very well to Ampligen, but the FDA can always pull the rug out from us patients, so I'm always looking for Plan B.<br /><br />When off Ampligen, I had HHV-6 and CMV in my spinal fluid. (Other viruses in my blood.) So I have wondered how rituximab would work with those of us who have immune defects and activated viruses. I guess i'll have to wait a while to find out.<br /><br />However - just because Rituximab is not approved for use for ME or CFS by the FDA does not mean you can't get it - that's what "off-label" means - if it is approved for one condition, you can get it off-label for others. But ... you have to pay cash. As I do for Ampligen. <br /><br />At any rate, following the rules by which the AIDS community came together many years ago - if it works for some of us, then all of us must campaign for it to be available. I'm just hoping we get more information soon about which biomarkers suggest it will be successful.Mary Schweitzerhttps://www.blogger.com/profile/11583106682242141031noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-66141129641441159222016-04-19T19:27:02.978-04:002016-04-19T19:27:02.978-04:00I thought they all had their ME return once Rituxi...I thought they all had their ME return once Rituximab was stopped.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-34447029773233417362016-04-19T14:26:48.573-04:002016-04-19T14:26:48.573-04:00Joe - That's an interesting theory I hadn'...Joe - That's an interesting theory I hadn't heard before. I wish OMI & others using it in the US would publish their results (even if they aren't controlled studies) so we could REALLY compare results in different places. Right now, I keep hearing negative things about use in the US but so far, it all seems to be hearsay and second-hand with nothing official written by the doctors using it and nothing concrete. All these rumors just tend to get blown out of proportion. Dr. Bell's remarks are interesting, too - he;s amazing & I have a lot of respect for him. My son and I saw him. Then again, that 20-year estimate is probably more a reflection of how slowly things go with the FDA than actual efficacy & safety!<br /><br />Thanks for the extra info!Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-40992342875724332692016-04-19T14:00:17.817-04:002016-04-19T14:00:17.817-04:00Thanks for the info on what OMI is doing with Ritu...Thanks for the info on what OMI is doing with Rituxan - I appreciate it! So sorry to hear it didn't work for you. I'm wondering if OMI is using the longer treatment protocol that the Norwegians developed in their latest study.<br />Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-68252307540214262072016-04-18T18:12:27.356-04:002016-04-18T18:12:27.356-04:00It's worth noting that Rituxan is probably the...It's worth noting that Rituxan is probably the reason Whitney Dafoe's condition worsened so dramatically after he started Rituxan. It's not absolutely certain of course, but even Whitney himself mentioned it in several posts. <br /><br />People are so desperate for a 'miracle drug' (which this definitely is not), that they attacked the writer of the article, dismissing Whitney's own posts on the matter:<br /><br />https://www.sciencebasedmedicine.org/chronic-fatigue-syndrome-rituximab-revisited/Marcianoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-54474777301849104752016-04-18T18:07:05.212-04:002016-04-18T18:07:05.212-04:00I think you're correct Sue. This has only bee...I think you're correct Sue. This has only been used in trials in Norway, which 'Hip' over on Phoenix Rising has suggested it showed more benefits than it's showing here (so far) because it may have been addressing a specific infection that was found to be prevelant in Norway at the time.<br /><br />Dr. David Bell said in a talk recently, that while he's excited about Rituximab, he thinks it will be at least another 20 years before it's approved (if it is) in the US.Joenoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-50075793205196997272016-04-17T16:29:06.989-04:002016-04-17T16:29:06.989-04:00The Open Medicine Clinic is providing Rituxan for ...The Open Medicine Clinic is providing Rituxan for patients all over the world. I just finished my treatment with very little/no response. Very disappointing, but I felt I had to give it a try. It is very expensive, but there is a pretty good program to help with medication cost if your income is at a certain level and you can prove your insurance won't cover it. Even with the medicine free, the visit is $1500 to $2000 each (x6) plus hundreds of dollars of blood tests. I know there are certain infections they test for before you can go through it, I don't know if Lyme is one of them.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-88544549724987921572016-04-17T10:21:17.109-04:002016-04-17T10:21:17.109-04:00Thanks for the info, Lee Lee - I hadn't heard ...Thanks for the info, Lee Lee - I hadn't heard about that.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-52304972053928209082016-04-17T10:20:42.647-04:002016-04-17T10:20:42.647-04:00Just that they used a range of patients with diffe...Just that they used a range of patients with different degrees of illness - one of those article links specifies how many were severe, moderate, etc. Also, when they tested the longer duration of treatment with more doses of the medication, they put some of the nonresponders from the first trial in that second one (some responded to the different dosing; some did not).Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-79558254452632529552016-04-17T02:12:54.598-04:002016-04-17T02:12:54.598-04:00There was a small ME CFS study going on in usa in ...There was a small ME CFS study going on in usa in 2013 i think ... i knrw a woman who was in the study but she had no positive response from the drug. As far as i know the resukts of the study were never published so i have mo idea what happened.Lee Leehttps://www.blogger.com/profile/02614823402670740413noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-71369075400453962282016-04-17T00:03:33.547-04:002016-04-17T00:03:33.547-04:00 sue . do you know what criteria was used to choos... sue . do you know what criteria was used to choose the ME patients for these trials ?diannenoreply@blogger.comtag:blogger.com,1999:blog-22576999.post-39127632711375840682016-04-16T17:25:13.887-04:002016-04-16T17:25:13.887-04:00It is still very much experimental, Chris, so dosa...It is still very much experimental, Chris, so dosage isn't widely known yet and is probably not available through any GPs. This is all cutting-edge and brand new. I hope the LDN works well for you - it worked very well for my son and I. Good luck!Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-43596998552832918962016-04-16T17:22:54.208-04:002016-04-16T17:22:54.208-04:00Oh, we KNOW he definitely does have Lyme, plus two...Oh, we KNOW he definitely does have Lyme, plus two other tick infections. They started several years after he got ME/CFS. My other son and I also got ME about the same time, so we know there is a genetic predisposition. Lyme and ME often co-exist - Lyme is one of many known triggering infections that cause ME to start in 10% of the patients who get the infection.Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-36211919207633677792016-04-16T17:21:21.296-04:002016-04-16T17:21:21.296-04:00That's great news!That's great news!Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.comtag:blogger.com,1999:blog-22576999.post-15212864612737484412016-04-16T17:21:03.175-04:002016-04-16T17:21:03.175-04:00That would be pretty quick, wouldn't it? Just ...That would be pretty quick, wouldn't it? Just based on what I've heard about your NHS. You certainly need more treatment options than just CBT and GET (which aren't actually treatments at all)!!<br />Sue Jacksonhttps://www.blogger.com/profile/14532098225905355332noreply@blogger.com