Hello posting on behalf of my husband who has relapsing and remitting MS and was diagnosed about 13 years ago, though his symptoms started much much earlier.
For many years he was on Avonex and for the last 7 years or so on Plegridy. He has a number of other conditions too such as asthma and acid reflux. He works full time and is usually exhausted when he gets home.
I’ve noticed a deterioration in his health, particularly energy levels, taking pain meds daily and cramps and numbness in his legs. He takes plegridy every 2 weeks and is pretty much bed bound for 2 days though it takes 3 days to recover completely.
He has consulted his MS nurse about the continuing numbness in his legs, had a recent MRI that shows no new lesions but his nurse and consultant think plegridy is no longer working for him.
Has anyone had any experience of alternative meds that have less severe side effects and work for patients who work full time? Plegridy meant giving up 2 weekends a month which has long been an issue for him as there is no “down time” from work.
Other than being overweight (COVID belly) he’s in good health. Any thoughts on meds that have worked well welcomed
Welcome to the forum. Your husband is very lucky to have such a dedicated wife looking out for him.
It sounds to me that your husband should be looking at a change in medication. Have you looked at MS Decisions aid | MS Trust ?
I’ve just posted the same link on someone else’s thread and suggested she swap to Tecfidera. In your husbands case, that might not be such a good option as it could make his reflux worse. Some people do manage it though, I get oesophagitis and Tecfidera didn’t seem to be a problem for that so he might be OK on it.
It’s an oral drug that must be sandwiched between food, particularly stodgy food which helps with any stomach issues. It might not help with the weight gain either (we all have Covid tums!).
He could switch to Copaxone or Brabio (same drug but Brabio is now cheaper than Copaxone). I had no drug reactions to Copaxone the first time I used it (for several years), but when I tried it again years later after having tried and failed on several other DMDs, it gave me horrible injection site reactions.
You (and he of course!) could be best advised by his MS nurse. Although I’m sure other people will comment on here.
I would recommend Gilenya (fingolimod). My husband has been taking it for 8 years and I think his progression has been slower than it would have been without this medicine. He is 60 years old. It is in tablet form and very convenient to use, especially if you are working still. Good luck!
Hi, I can recommend Tecfidera. I have RRMS, been on Tec nearly 3 years, relapse free in that time, MRI’s all good too. No real side effects to speak of either. Taken twice a day with food, although in the morning i tend to take it with a thick fruit smoothie which works fine. I have no fatigue and also easily manage a full time career.