Page 2 of 2
Posted: Mon Mar 26, 2018 7:44 pm
Thanks, Diggity. I will try to talk to the neurologists about this as I took it that it was a long term commitment (over a few years) and you had to 'see it through' ... However, it makes sense that if after a few months it hasn't worked that you can try something else.
Did you have to wait long between deciding to go on it and actually getting the first round of infusions? I am a bit concerned about progression in this waiting time, which, for me, is likely to be a few months. (Other DMDs could be started earlier, I think.) However, like you, I think OMS is beneficial and maybe having more time to adhere to that strictly before treatment is actually a good way to prepare. (I would have begun OMS earlier but only 'found' it around Christmas time. I then decided to go into it properly after the Festive Season was over.)
It is good that your treatment has coincided with longer evenings and (hopefully) better weather. Getting walks in the fresh air is definitely something that is healing in itself.
Posted: Tue Mar 27, 2018 8:40 am
It is long term in that, for full treatment, you need two rounds, one year apart. The second round is three infusions rather than the original five and is, essentially, a mop up exercise for anything that the first round missed. These two rounds are independent though, so you could decide six months after round one to stop with Lemtrada and do something completely different.
The time from my neurologist agreeing to put me on Lemtrada and treatment was six months. I really believe that my primary disease prevention is OMS and so I wasn't overly worried. I just see Lemtrada as a safety net.
Posted: Tue Mar 27, 2018 12:08 pm
Thanks Diggity. I like your approach - that Lemtrada is your safety net and OMS is your primary method of disease prevention. The whole OMS approach resonated with me as soon as I read about it. I am going to really focus on it as I go through the move to new medication (Lemtrada). The area I most need to work on, I think, is meditation and dealing with stress better.
I hope you are feeling stronger and the recovery is going well. I take it meditation and diet are fairly uninterrupted by the treatment but hope each day allows you to build up the exercise ... do keep me/us posted. Thank you for all the tips and sharing your experience. It has been really helpful to a fellow OMSer in a similar situation regarding DMDs.
Posted: Mon Apr 09, 2018 10:58 am
Hello Diggity. I just wondered how you were getting on after your Lemtrada? I hope you are feeling much better and are able to get into all your usual life activities again. I am due to start treatment in June and still a bit anxious about the whole thing. (Have looked at other options such as Tysabri but it seems scary too!) Thank you for all your comments date - they have been invaluable.
Posted: Tue Apr 10, 2018 3:05 pm
It's been much easier than expected. The hospital visit was no problem at all and I've been feeling better and better - until this week.
At the weekend I was feeling very weak and fatigued and then last night it felt like I had the flu. I went to the doctor today and he checked me over and reassured me that I've just got a cough and cold. My lymphocytes are so low that it just hit me for six. Hopefully, when this cold has gone, I'll get back to feeling good again.
Posted: Tue Apr 10, 2018 5:55 pm
Hi Diggity. Thank you for the update? l am glad you are feeling, overall, on the up and up. I expect a cold/flu is to be expected at some point but not much comfort when you are in the middle of it. I I have a lot of questions about the treatment but more or less back to it as my choice again, after a flirtation with Tysabri and/or Cladribine. Be well - are you keeping a diary? Great to hear how your joumey is going!