I’ve had RRMS since 2004 and have been on various DMDs, all of which made me worse I’m sure. After a rough relapse at the beginning of this year I stumbled onto LDN and have been taking it for approximately 6 months, My symptoms have improved, my energy levels are great and my mood is so much better (much to the relief of my husband!). A few months ago I had an MRI and as usual had to wait a while for the results which I got last week. As I suspected it shows new activity and my neuro/MS nurse have suggested I go on Tysabri.
I am now torn as to what to do. I am currently at Uni studying to be an OT so I have access to all the medical libraries and have done lots of research. Although my JC virus test came back negative I am still not convinced Tysabri is a good thing and to be honest I’m scared.
LDN seems to be keeping everything at bay but I don’t know whether to give the tysabri a go. I asked if I could do the two together but my ms nurse (who didn’t even know what LDN was when I told her I was on it) said that they were not compatible.
If anyone has any advice it would be greatly appreciated.
We did have a couple of people on this site successfully combining both treatments (with full knowledge of their Neuro), but not sure if that is still the case. Why not send Dicksons Chemist a mail and ask for their view, as they will have a more informed opinion.
Hi Sarah - I was on LDN for 6months at the start of the year and felt good but maybe i went off it because of feeling good but now I am back on LDN after a rough couple of months - drug interactions are interferons - alpha and beta according to the leaflet - contact Dickson’s Chemist in Glasgow and find out. Good luck
I don’t think of it as an either or situation. If my neuro recommended Tysabri then he would have very good reasons for doing so. I would be very foolish to ignore that advice.
I agree what the others say, speak to Dixons chemist they are the experts.
Listen to your body not consultants or doctors they will give you the party line. Pharmaceutical drugs may work for some, great if it does, but not all.
Thanks everyone, I will definitely give Dicksons a ring.
I understand why my neuro wants me to start Tysabri but the info they give you is from Biogen and it is obviously biased. It neglects to tell you it could cause malignant melanoma, liver damage and a whole host of infections…it was this information that was putting me off.
I’m not a fan of pumping toxins into my body…the LDN appealed to me because of minimal side effects…and it seems to be working.
Hi Sarah, I tried Rebif and Copaxone but hated them both due to side effects. I’m on LDN & 4-AP now and love them both, no side effects at all. I’ve never been offered Tysabri but I’d be reluctant to try it if I was due to the risk of PML. Hope this helps Andy
Im 3 years into my Tysabri journey. Dont be frightened of all the negative stuff the Health Professionals monitor you very carefully. At the start of my journey, I was on LDN and also having the tysabri treatment, with full blessing of my Neuro and MS Nurse. The ONLY reason I stopped LDN was the fact that my Doctor stopped prescribing it to me… all to do with budgets ets etc… but then saying that it is a bit expensive to buy. I have to admit maybe it was the placebo effect that made me felt better ? who knows.
Saying all that, on my last MRI scan there was no further activity from the previous scan 12 months before, so Im staying with the Tysabri for the time being. Im still on my feet, still working… but I am not ready to give in yet.
hi sarah, i’m from us unfortunately, not a part of the group. your post was picked up by my web crawler and i wanted to respond, in part because your ? helped me…LDN…
I was diagnosed in 2004 also. used beta for 3.5 years until it stoped working. used tysabri for 3 years, found out i was jcv- and lost m y temper during an infusion and have been off ms meds for about a year. tysabri worked well when i used it, but i really hated the monthly infusions. now i’'m at a stand still ms worsening and i dion’t want to go back to infusions. you provide an answer LDN.when i stoppedty so abruptly i did not have a reboubnd affect, my ms getting more active than it was before i started it…my neurio indicates this may mean i’m past rr. my firsty ms symptom was 27 years ago, a while ago.–so 2nd stage not unreasonable. in the us i trust the rocky mountain mscenter and dr. volmer and he has said in a webcast ast that if jcv-, tysabri is safer with fewer adverse events than copaxone which is the safest of the injectibles…as for your dilema i have read others using LDN & tysabri together. LDN is an immune enhancer. people with ms have a misdirected immune system. the interferons suppress the immune system then ldn activates it, they oppose each(cross eachother out), but tysabri only works on 1 piece of the immune system so ldn does not suppress tysabri affect as much if at all…BUT I too have had diagnosed MS since 2004 and i have regreted when i tried to do too many things at once so i did not know what worked and what didn’t—IMO i think yopu should start tysabri give it about 6-8 months to get up to fulll effect…then add ldn…imo for me i will be discussing ldn at my nexrt neuuro appointment thanks to my web crawler cathching your post. THANk YOU!
Sorry, that piece of information is incorrect. The interferons don’t suppress the immune system and LDN doesn’t boost it. Check out the very detailed information at the LDN Trust, or just at Wikipedia. There’s a good explanation on how the interferons work on there.
There were a few people using Tysabri and LDN who posted at the old website.
a good book on how the interefrons work& how i learned they worked is"Woman and Autoimmune Disease" by robert g lahita,MD,PHD…interferons work not by suppressing the immune system which is true, interferons are extra cells that alert the immune system(cytokine cells) to attack these false alert cells instead of the cns systmem the imune system is incorrectly attacking (keepd the immune system busy) then ldn charges the imune system even more to attack these extra false alert cells and may have even more fire power to attack the cns too…any which why ldn & an interferon togerther is not wise–they work against eachother…although i have heard some doc’s say the effect of ldn compared to an interferon is negligible so they don’t cross each other out much…still doesn’t seem like a wise decision to use them together when you know they oppose eachother…ldn alone is betting on ms being more of a virus—and no one knows what MS is?or even if ms is a collection of diseases using the same name and what specific variation each person has? could be you have the viruis variation? and ldn does the trick for you.?
Suppression would be when a part of the immune system is deactivated, the interferions are immune modulsators, it is correct they ar not suppressors,…i just used the term because it was easier to use than a description of an immune modulator cytokine…please read up on it & if you feel uncomfortable about biogen marketing why should you not be suspicious of LDN’s?
i came back to explain why i lost my temper during an infusiion…US healyh care system & the radical right that does not tbelieve in paying for treatment for " human defects" it was an election year. i am vey glad President Obama won a 2nd term and caused this radical rightr wing republicans to pause for a moment, we still need to clear them out of our governmenrt…maybe next election cycle? …blueb never redb
if i’m secondary, i’m thinking now is the time for ldn for me. ms not so active against antigen cells…READ THE BOOK ON HOW THE IMMUNE SYSTEM WORKS!
Hi Sarah, I’ve been taking LDN for four years now and Tysabri since Febuary this year. Neuro has never had an issue with me taking LDN and Tysabri. I’ve kept up with the LDN as it really helps control my bladder. You could always contact to LDN Research Trust, there will be more than me taking the two.
I have decided to go with both. I’m booked in for my first infusion on Friday morning. I’m a little nervous but so many of you seem to have done so well it would be silly not to. Anything to put the breaks on this awful disease!
I’ve just had my 15th Tysabri infusion. Was the exact same frame of of mind as you before I began the treatment… Terrified of PML. I’m JCV- & as long as I don’t become + then I’m happy on Tysabri. I haven’t relapsed since being on this treatment and that’s good enough for me! Hope your first treatment went well! Z
I’m on Tysabri 4 years past in August I’ve never tried LDN but before Tysabri I used a wheelchair and only had the use of my left arm, bowels and bladder didn’t work and fatigue was a night mare
But now I’m out of a wheelchair walking I’ve the use and strengh of all my limbs and the fatigue is gone I put that done to Tysabri allowing me to addend the gym at least twice a week I still have to self catheterise but if thats all I ever have to worry about I’ll be more then happy.
They keep a very close eye on you when your on Tysabri much better than any other treatment my MS is now stable and I’ve never had a relapse since I started Tysabri my MRI in July 2008 before I started Tysabri showed alot of lesions the MRI I get every year has shown improvement there’s less lesion’s now than when I started Tysabri.
I’m Jc negative but only found that out there in May I didn’t want to know but they done the test and told me but even I was positive I wouldn’t change my mind about staying on Tysabri people worry about PML I don’t why would I even the highest risk of PML is 1 in 250 or something it my not even be as high as that when you see the risks of all the other things you could get its nothing even getting cancer is 1 in 4 and dying from it is 1 in 6 that only 1 of the other illnesses you could get.
If your neuro has asked you to think about taking Tysabri then go for it they wouldn’t say about Tysabri if you didn’t need it, I was on other DMD’s the side affects where not nice but with Tysabri I have no side affects just benefits.
Had my 1st infusion this morning and it all went really well. I was sat next to a man who was on his 9th and he was very reassuring, we had quite a laugh and he seemed pleased he now has a tysabri buddy to chat to every 4 weeks! I’m going to keep taking the LDN too but I might just knock the dose down slightly…its been great for me and I don’t want to lose the feeling it gives me. I’ve had quite a few people tell me it doesn’t affect the Tysabri so thats good enough for me.
Thanks again, your comments really did put my mind at ease and I actually felt quite relaxed when I arrived at the hopsital this morning.
I’m glad it all went well for you when you get talking to someone on Tysabri they can put your mind at rest.
I hope your feeling ok today I know for some they can be really tired after there infusion others get a real boost of energy, the first 2 years I was really tired after it but then that all went away along with the fatigue now straight after my infusion I go round to the gym for an hour or 2 to make the must of the energy I get from it and when I go to bed that night I have a great peaceful nights sleep.
I’m feeling fine today. I did feel quite energetic yesterday afternoon but I did use the fact that I’d been up the hospital for 3 hours as an excuse to lounge around the house and watch cheesy daytime tv lol However you’ve now made me feel guilty by telling me how you hit the gym…because thats why I should be doing lol.
You’re an inspiration Mark…I’m off to dig out my gym kit!
i have just recieved a letter off my consultant i have to go on the 10th jan for the jc virus blood test , i was diagnosed this year and after having to change specialist im hoping its all starting to get sorted abit now. im still not on medication. i’m a little scared of tysabri but after reading these posts its put my mind at rest alittle , the only thing is i cant understand why ive not been tried on anything else first???
I have a couple of friends that went straight on Tysabri as well there neuro was able to tell them that there MS was just to aggressive for the normal DMD’s
I spend a year on Avonex but it done me no good but Tysabri wasn’t available to me back then I wish it was I wouldn’t have had to get so bad or go through what I had to go through but there again in a way i’m glad I did It lets me know how lucky I am to be on a drug that got me through it, it got me out of a wheelchair walking and relapse free for over 4 years now and its reversed most of damage that was caused by relapsing every 4 or 5 weeks so I’m happy.