been on tecfidera for a year or two but starting to relapse been advised to change medication

Everyday living
1

hello ive had MS for 16 years officially but my new consultant believes i showed syptoms 10 years before diagnosis.

ive had the injections but had bad side effects. im on tecfidera at the moment. used to have flushes but wasnt too much of an issue. my MS was under control . i could still do anything i wanted. ive just stopped kickboxing . im 50. now ive had a few relapses. nerve pain.fatigue. emotional stuff etc. so my MS doctor has advised me to consider changing my medication. my options are firstly stay as i am but drug isnt as good now, the doctor has mentioned. Aubagio.Gilenya.Lemtrada and Mavenclad. two are tablet and two are infusions. ive been told to consider the change, ive been trying to research which would be best for me, to be honest im totally confused . so if anybody can give me advise on the medications, if you are on any of them ,side effects etc, i would be very grateful. thank-you for reading my post.

2

lemtrada has good results but it’s an infusion.

never heard of mavenclad so i googled it and it’s 2 tablets taken 6 months apart.

don’t fancy aubaggio or gilenya myself.

i’m on tecfidera.

3

thank-you for replying. ive had few different treatments over the years and tecfidera has been good. recently had a few relapses and a few new lesions showing on my brain scan. i like the look of lemtrada , lucky we have the NHS. ridiculous prices.

4

yea you’re right about the nhs.

let’s hope this government don’t set us up to copy america’s system.

5

i think lemtrada (alemtuzumad) could be my next step on my MS journey. ive had rebif and another injections before. self administered i dont want anymore injections as i have a lot of scar tissue. im now on tecfidera,im having more relapses and have one going on at present like pulsating feelings in my back and neck. painful as well. ive had MS for at least 16 years from diagnosis. maybe 10 years before undiagnosed. my problem is i really dont like being an inpatient. we have a centre in bristol . called the brain centre. lemtrada is an infusion. has anyone had lemtrada . im looking for experiences and side effects but if anyone can tell me if i have to be in hospital for the procedure. i would prefer to be an out patient. last time i was in i got bored and walked home. its only 2 miles to home . its strange but i like being home obviously if im ill i would stay in .

6

there is a group for lemtrada users on facebook.

maybe you could hear about how other people have done on it.

7

Hi

I reckon Lemtrada is an excellent option. It does have serious potential side effects, but then so do a lot of the other DMDs. In your situation, I wouldn’t have thought Aubagio was even slightly sensible. It has such a low relapse reduction rate and still has the potential for side effects.

As well as looking at the Facebook group, you could try looking at https://shift.ms/ There are a lot of people on that forum who’ve had, or are having Lemtrada.

Best of luck with your decision.

Sue

8

sorry back again… my decision on taking lemtrada doesnt really appeal to me now. after having a long talk to my ms nurse. im more keen on mavenclad. i know all medications have side effects but i know of one patient who died of listeria pneumonia whilst taking lemtrada at the clinic i attend. i know mavenclad has risksbut they seem less. so now i have the choice of lemtrada or mavenclad . can anyone help with advise on this please.

9

Hi Facebook has an active page for Mavenclad or Cladribine. This can be given as tablets or injections (given in the stomach) and treatment is twice a year for two years as an outpatient. This treatment is an unlicensed trial and you will find a lot of information on Facebook or Barts MS blog. I am hoping to be considered for Cladribine.

Sue