Hi, because my white blood count is so low .2 I have been advised by MS team to take a break from Tec till my count improves. I am very concerned I’ll relapse has this happened to anyone else? Regards Helly.
I was taken off Tec (after 4 years) in early December due to gastric problems and significant weight loss. I was nervous of relapse but I’ve been fine. I actually feel better because the gastric issues have calmed. MRI booked for next week to decide what (non oral) DMT to try next…
.2 is very low. Different teams consider different limits to be safe and how low it can be before taking action.
1.0 is considered safe and normal. Other centres accept .8. it is expected to go low and then recover. It all depends on how low and how quick the recovery is.
I was very happy with Tecfidera for a couple of years with minimal side effects and nothing like the relapse that led to my diagnosis. My lymphocytes were slow to recover.
I was taken off six months ago and have just restarted completing my 7 days of half dose. Unfortunately I had a confirmed relapse before Christmas. There is no way of saying this would or would not have happened if I stayed on, but my MS Team was concerned about the risk of PML from the JC virus. Between the devil and the deep sea.
Being on a DMT has a psychological benefit in that feel you are doing something, but it is all about odds of good and bad things.
Thank you for response. Have you recovered from relapse, what form did it take (if not too personal ).
Thank you for response. I truly hope whatever you take is ok for you. I am 66yrs now & was diagnosed at 60yrs. I have been on Tec since the start my first med I was given. Having a relapse at any age is frightening but, I think it scares me more now.
Balance was down because of Nystagmus (new symptom). Taking it easy set back my endurance and range, but not disastrously. Avoid medication when I can and as concerned about steroids increasing risk of catching COVID from family visiting from London did not take anything.
I have great difficulty deciding what is a relapse and what isn’t. Definitely had a relapse just over a year before the relapse I was hospitalised with and diagnosed after a day of tests. Now had this one. I am sure some people will put sets of symptoms down to a relapse while others will put them down to normal variation and others to the results of enforced inactivity.
I tried to avoid taking things too easy or pushing myself too hard. I was having physio in additional to four Zoom exercise classes a week. I think the relapse set me back six to eight weeks ( but some of that may be down to Christmas).
Steroids are supposed to speed recovery rather than where you get to. Keeping going is probably more important.
Hi Helly, I came off tecfidera when my lymphocyte count was at 0.4. It was my first DMT & I’d been on it for a year. My lymphocyte count still hasn’t stabilised at 1 or above, so I’ve been medication free for 17 months. I’ve not knowingly had a relapse in that time & an MRI was clear. Fully appreciate my MS may have been smouldering, but I feel very lucky to have stayed well MS wise. I’m in my 50’s.
Thanks for reply. I just hope I don’t relapse I will have everything crossed. Stay well regards Helly.
Hi trying2beserene, I hope I’m using this web sight correctly. Thanks for your reply. I am so glad you have stayed M.S wise well & every other way. I hope I’ll be as lucky! I will have my fingers & everything crossed. Regards Helly.