Hi all. Not been on here for a long time! Was wondering if you could give me your thoughts.
Ive taken Rebif, Gienya and Tecfideria. All gave messed with my liver, I now have possible Autoimmune Hepatitus because of the drugs! They’ve offered me Lemtrada? However with my history I feel it’s too scary, as I know I would be that person who has kidney failure. I’m not on any medication now, and I’m thinking to stay this way. Thanks x
Hi Shellie
Well, Tysabri messed with mine. Plus another couple of drugs, one of which couldn’t be directly pointed to, may have been a cocktail of drugs that disagreed, and the other was Betmiga. I don’t actually have autoimmune hepatitis, but one of the gastroenterologists I’ve seen has said there ‘may’ be an autoimmune connection. So as far as I understand it, I’m unlikely to get hepatitis unless I take a drug that my liver just doesn’t like.
Basically, my neurologist won’t give me anything that has the potential to screw with the liver.
I may be in a completely different circumstance to you, I’ve had MS for nearly 20 years and am quite badly disabled, partly through only having been on a DMD for a few years of that 20 (I’ve had other drug reactions to Avonex and Tecfidera). I couldn’t have Lemtrada regardless of the liver because I’ve already had Graves’ disease (overactive thyroid) and autoimmune thyroid disease is a potential side effect of Lemtrada. I’m quite badly disabled, I can’t walk and have various ongoing problems with bladder and bowels, cognitive trouble and various other iffy bits of me. I’m also nearly 50. My neurologist won’t come right out and say I’m SP, but does think that my MS ‘is more progressive’ to quote his latest letter.
So I’m in a position where I cannot take any further DMDs. I may still be RR or maybe SP with relapses, but as I’ve not had just one bad reaction, but several different ones (lymphocytes with Tecfidera, cognitive trouble with Avonex), there’s too many that are just off the list to take a risk with any more.
I can’t advise you regarding Lemtrada, but one of the things my neuro said to me was that with the heavy duty one off drugs, like Lemtrada, Cladribine and HSCT, if you have a bad reaction, you can’t come off it and your body will recover relatively quickly. Whatever it does, you are probably stuck with for some time, if not permanently.
Are there no other DMDs that are not metabolised through the liver?
You need to think about what age you are and your current state of disability as well as how active your MS seems to be. If you are young and not badly disabled, but are having lots of disease activity, if Lemtrada does not usually cause liver problems, then I’d probably take the chance and take it. If you are older, have been diagnosed for a lot of years and haven’t had too much disease activity, I might take the chance of no DMDs.
Best of luck with your decision.
Sue
It’s a pity when you hear about medical breakthrough’s, then people getting other medical issues seems to be a medical roundabout with things at times. I know there’s side effects with most drugs, but the higher it controls, always gives the harsher returns. The only other way i would look at it would be around antioxidants from purely no treatments. I know you will do what works best for you, so good luck with that, as it’s a hard place to bat from.
I stopped all treatment 4 years I had terrible side affects so after a lot of thinking decided to stop I feel so much better now, I follow a strict diet and lots of supplements, it wasnt easy stopping treatment but for me it was the right thing to do, I hope you feel better what ever you do.
Thank you so much for feed back. I was diagnosed 1995 and I’m 50 years old Ssssue, so am thinking I’m not going to take no more! Enough already I think X
simone2 I would love to know what sort of diet/supplements you take, if you have time. Thank you x
thank you L 3301 x