tag:blogger.com,1999:blog-2838498765761167784.post8210956622582296178..comments2024-01-29T11:48:55.990-07:00Comments on Dave's ActiveMSers Blog: Going MS drug free: the flawed argumentsDave Bexfieldhttp://www.blogger.com/profile/09372910409976557944noreply@blogger.comBlogger94125tag:blogger.com,1999:blog-2838498765761167784.post-49752982235838359712023-05-11T11:55:36.496-06:002023-05-11T11:55:36.496-06:00Anon, as if you needed another wrinkle to cloud yo...Anon, as if you needed another wrinkle to cloud your commitment to DMTs, I discovered in 2021 that I had been misdiagnosed. I have Lyme disease. And I've been writing a memoir about it. I recommend checking it out.<br />https://www.sitdownbeforereading.com/Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-63316224366820151872023-05-10T12:03:14.079-06:002023-05-10T12:03:14.079-06:00Kinda needed this today. I’m on Kesimpta and havin...Kinda needed this today. I’m on Kesimpta and having a rough time of it with side affects. Started wondering “what if I just ….” It you’re right. I’ve got a daughter to think of. I know this is is an I’m older post. But really needed to see it.Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-60102554287003661822021-12-02T08:49:11.764-07:002021-12-02T08:49:11.764-07:00Ugh, Amelia. It is sooo expensive. I'd estimat...Ugh, Amelia. It is sooo expensive. I'd estimate that since I received my MS diagnosis in 2005, over $2 million has been spent on my care. Craziness!Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-64464196180981884442021-12-01T18:06:13.903-07:002021-12-01T18:06:13.903-07:00Glad I found this article. Diagnosed at 49, on DMT...Glad I found this article. Diagnosed at 49, on DMT until 2020. Tough couple of years with husband diagnosis of Huntington’s and handling his exit from professional work along with LTD claim. Now as “unpaid” caregiver having exited my professional career due to MS struggle and need to spend time with husband I need to get back on DMT track. The cost of the MS DMTs really is difficult to understand; especially the generic form of Tecfedera which is the drug I had been taking. I get that drug research and development is an expensive process and that businesses need to make money. Think if prices weren’t so cost prohibitive the majority of MSrs would be on DMT. Frustrating.<br />Amelia Pondnoreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-42169862504698561912021-03-05T17:48:42.492-07:002021-03-05T17:48:42.492-07:00Anon, I'm not a neuro, but DMTs tend to be les...Anon, I'm not a neuro, but DMTs tend to be less effective with age. One drug that could treat arthritis (RA specifically) and MS is Rituxan. Hope you get some satisfying answers!Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-8305187536947838642021-03-05T17:31:28.805-07:002021-03-05T17:31:28.805-07:00I was dx with MS in 2006..when I was 50.. I had be...I was dx with MS in 2006..when I was 50.. I had been treated for arthritis etc for 10+ years.... ironically I was dosed with steroids which helped .... but I started on Copaxone40mg 20mg SQ daily for 10 years, then switched to 40mg three times a week....I have had many ups and downs but thankfully I give the credit to Copaxone injections... but I was dx this year with Parkinson’s disease....which I think my symptoms began about a year ago but became severe when I had a kidney infection that led to an MS exacerbation... bottom line is that I have been on Sinemet 25/250 every 4 hours for 8 months with good result as well as continuing the Copaxone but a new neurologist has broached the subject of stopping the Copaxone....because of my age....I don’t agree...because I maintained mobility on the Copaxone with few relapses (5)<br />In all these years.... he seems to think that the Parkinson’s disease is causing me problems not the MS...<br />Copaxone is the only MS Med that I tolerated....<br />What are your thoughts?Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-23696401318288876032021-02-01T10:29:12.787-07:002021-02-01T10:29:12.787-07:00Elzina, I appreciate the feedback. Just hope peopl...Elzina, I appreciate the feedback. Just hope people pay attention!Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-37188672714530910052021-01-31T04:57:56.713-07:002021-01-31T04:57:56.713-07:00Dave, this is again a very good article!!!
Elzin...Dave, this is again a very good article!!!<br /><br /><br />ElzinaElzinahttps://www.blogger.com/profile/13379350794280557045noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-39702980482637635772020-12-19T12:09:29.798-07:002020-12-19T12:09:29.798-07:00Oh thanks Madeline! I'm glad you found medicat...Oh thanks Madeline! I'm glad you found medication that is working for you. :) This disease can be a total buggar, so slowing it down is imperative.Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-87397150732503836242020-12-17T19:59:22.335-07:002020-12-17T19:59:22.335-07:00Hi Dave
great article ,too bad more people would... Hi Dave<br /> great article ,too bad more people would go to homes of people who have to be taken care around the clock and see what has to be done for them...good one ....i believe everything that you write about on you pages for they are so true for me and many more...yes i have tried several different drugs and not much help but i have finally found what works for me the infusion of Ocrevus...yes i do understand that it isn't a cure but it has helped me so much...yes if they could meet and talk to someone that is in a bad way with their MS where some one has to do everything for them for they never had the choice of a drug to slow it down they could talk and maybe explain to them what it had been not being able to do anything anymore then maybe some would listen to you...good luck ...keep on writing these great articles ...thank you so much...have a wonderful Christmas ...love and much happiness to both of you..take care and stay safe... <br /> madelinehttps://www.blogger.com/profile/13833934911229523695noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-23992866278688876972020-11-30T15:26:28.207-07:002020-11-30T15:26:28.207-07:00Dr Yuval, well said. Patients, please keep an open...Dr Yuval, well said. Patients, please keep an open mind to advice from people "who have dedicated everything" to assist those with MS. Contrary to some derogatory opinions on the internet, most neuros are not in the pockets of Big Pharma just trying to make a buck off you. They just care. Period.Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-4404338227424449642020-11-30T15:19:30.100-07:002020-11-30T15:19:30.100-07:00Kathy, HSCT is most effective in early MS (<10 ...Kathy, HSCT is most effective in early MS (<10 years), younger patients (<50), and in the relapsing form. Unfortunately you are not a candidate for HSCT in the US, sorry. Me either, or I would consider a second transplant!Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-73237092394685722202020-11-30T15:14:27.837-07:002020-11-30T15:14:27.837-07:00Barb, this is a question for the experts. But know...Barb, this is a question for the experts. But knowing what I know, there is no right answer for your particular scenario. You are in that gray zone, which can be frustrating I know.Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-74430610764767395212020-11-30T04:45:51.122-07:002020-11-30T04:45:51.122-07:00I hear you dear man. And from two sides one person...I hear you dear man. And from two sides one person who acts both as a Doctor and a patient - I plea to put some trust, even a little, or at least give a reflective and long thought, ask around - because it is the desicion of the person who suffers, but the the desicion not to treat is a way of listening only to the suffering part, and the more you listen to him, so it grows. So please take into consideration some wishing will personal triple checked advice crom people who dedicate everything to assist those who suffer Dr Yuvalnoreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-65743229549723292182020-11-29T21:20:16.799-07:002020-11-29T21:20:16.799-07:00Hi Dave,
What are your thoughts on HSCT (Hematopoi...Hi Dave,<br />What are your thoughts on HSCT (Hematopoietic Stem Cell Transplant)? I have had MS for 34 years, and am now SPMS. I am considering HSCT. Do you know where in the US it is available?<br />Thanks,<br />KathyAnonymousnoreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-17451461099187272392020-11-29T07:06:01.948-07:002020-11-29T07:06:01.948-07:00Hi Dave, Thank you for posting this article, I not...Hi Dave, Thank you for posting this article, I noticed originally posted in 2011. When I was diagnosed with MS, I was 35 and had no health insurance, at that time the drug companies weren’t offering help. I was originally diagnosed with relapsing/remitting MS. I have tried many therapies as well as the regular maintenance drugs, ie; Baclfen, Tizanadine, Ampyra. I’ve previously been on injectable, Rebif, for years, I’ve been in an active study years ago. The only drug I’ve felt helped me was Tysabri, which I was taken off after 3 years when my antibodies came back positive for PML. <br />I am now 62 years old with Secondary/Progressive MS, and taking Ocrevus twice yearly. It has come up with my doctor that once you’re a certain age, if you feel the drug is not doing anything for you, to stop and just stay on your maintenance drugs. I’d like to know your feelings on that. He was going to put me on Mayzent, (approved for Secondary/Progressive), but with COVID, he is hesitant..Barbhttp://myboomermind.comnoreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-48345624656044564422020-11-27T16:36:20.819-07:002020-11-27T16:36:20.819-07:00Pistachio! Great comment. And absolutely no eye ro...Pistachio! Great comment. And absolutely no eye rolls here. If we could live our lives with fewer chemicals, the better I say. But when it comes to taming your MS, nothing compares to proven disease modifying therapies. I hope you get the opportunity to start on one soon. In the meantime, put emphasis into cardio exercise—it's one of the few non-pharmaceutical tools that has the potential to modify the disease. I enjoy your insight here and on the forum.Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-47780352280478057622020-11-27T13:11:11.025-07:002020-11-27T13:11:11.025-07:00It will admit to "doing things naturally"...It will admit to "doing things naturally" . But, first, before you let out a huge sigh and roll your eyes, hear me out. I live in Canada. You know, that cold, snowy place of igloos, dog-sleds and free health care (remember, nothing is actually "free" ). We have the great fortune **cough, cough** of being newly diagnosed AND experimenting with natural treatment. Why, you ask? Because it takes FOREVER to get diagnosed and start treatment. I visited my MD for symptoms in July. I finally got an MRI 88 days later, at the end of October. Oh, and my first neuro appointment??? Well, how about the end of April???!!! Now, if you still have the cognitive ability of a 3rd grader you can do the math on that. Yes, TEN months from first visit to setting your eyes on your new best friend - your neurologist. So, you see, here in The Great White North we have to go au naturelle in an effort to at least feel some control and maybe, hopefully at least not help our brains continue to literally burn the midnight oil.<br /><br />Anyway, after that long rant-ish post I'll say, thank you, Dave, for offering a different perspective. It's definitely given me something to ponder.Pistachionoreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-77894974250916817902020-11-25T13:26:03.561-07:002020-11-25T13:26:03.561-07:00Anon, that means a lot, thank you. The long run ma...Anon, that means a lot, thank you. The long run matters. Matters a lot!Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-32772869422979086792020-11-25T12:25:31.054-07:002020-11-25T12:25:31.054-07:00Thank you Dave.
This was literally the pep-talk ...Thank you Dave. <br /><br />This was literally the pep-talk I needed right now 😅<br /><br />I started DMT in 2018 with Copaxone (not effective for me, new lesions), then Tecfidera (severe lymphopenie) and just recently had to give up Rebif (side effects held on for over 4 months and finally gifted me with a night at the hospital).<br /><br />So now I can choose between Aubagio and Zeposia and, in the last days, had sometimes a hard time coming to terms with another medication and other potential side effects. <br /><br />But as I constantly repeat to myself: I am in it for the long run!<br /><br />So your post hit home. Thank you very much! Anonymousnoreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-31074066272109221552020-11-25T10:44:41.161-07:002020-11-25T10:44:41.161-07:00Roland, that's criminal that you didn't ge...Roland, that's criminal that you didn't get a DMT earlier. Thanks for telling your story.Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-51896375515707817892020-11-22T16:55:39.269-07:002020-11-22T16:55:39.269-07:00I'm an ex-pat Brit with SPMS. When I was first...I'm an ex-pat Brit with SPMS. When I was first diagnosed with mild/benign MS back in 2000, my NHS neurologist in London only offered me steroids when the MS began to show signs of becoming RRMS. I declined for various reasons but was never offered DMTs of any sort - although an alternative therapist did suggest a disturbing alternative, I didn't pursue.<br /><br />Over the last two decades, the RRMS has become SPMS and all I have been prescribed is Baclofen - which my body couldn't handle - and Gabapentin, which I took until a few weeks ago when my neurologist wouldn't continue to prescribe without a visit that I'm reluctant to make mid-pandemic. I'm now in the US, and the neuro was amazed I'd never been prescribed DMTs back in the UK - the NHS is usually good but does run a 'post-code lottery system' for supplying drugs: if you live in the wrong area, you won't get them. Same with Sativex, the cannabis-derived oral treatment.<br /><br />Anyway, on my last visit to the US neurologist, he felt my SPMS was so inactive, treatment would be ineffective. And I'm retired so unable to afford the ridiculous medical costs - I'll only become eligible for Medicare in 2021...if I can afford the basic cost even. <br /><br />So, guess I'm a warning to others - or I fell through the cracks in two systems.Roland Clarkehttps://www.blogger.com/profile/03302133565980901397noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-72693332463330734972019-12-26T16:35:34.498-07:002019-12-26T16:35:34.498-07:00Tysabri and Gilenya are used for SPMS now.Tysabri and Gilenya are used for SPMS now.Anonymoushttps://www.blogger.com/profile/10249523042765133336noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-44388015629009043742019-07-29T09:15:31.204-06:002019-07-29T09:15:31.204-06:00Anon, the age thing is a thing, at least when it c...Anon, the age thing is a thing, at least when it comes to insurance companies not wanting to pay for treatment. There isn't a perfect answer, but it sounds like you and your neuro are making it work. Best of luck.Dave Bexfieldhttps://www.blogger.com/profile/09372910409976557944noreply@blogger.comtag:blogger.com,1999:blog-2838498765761167784.post-34302745468003420092019-07-28T18:23:51.464-06:002019-07-28T18:23:51.464-06:0065 yo diagnosed in May of 2010, started therapy wi...65 yo diagnosed in May of 2010, started therapy with Copaxone in August, 2010. Initial symptoms were visual. MRI's have been stable. Some clumsiness, a few falls...but can't be sure that multiple foot surgeries haven't contributed to that. Shots still uncomfortable. Legs look like hell, but I'm not getting younger so they won't get better looking. Going from 7 shots a week to 3 felt like a gift from heaven. I broached the older people stopping dmd's after being stable for several years with my neuro, but will not go off without his agreement.<br />Anonymousnoreply@blogger.com