Hi my Tina and I’m due to start the drug Mayzent in a couple of weeks is anyone on this? If so what has your experience been like so far?
Hi Tina, Ive not started yet, but im waiting. Its a new drug in this county so at every point its a delay - I was originally told March! The nurse who took my bloods and did an ECG was looking after 4 others and they were getting on fine with it so fingers crossed. let me know how you get on
Hi Act1
I’ve had my blood tests and ecg had the go ahead to start. Only problem I haven’t had chicken pox and the drug company need to know if I’m immune or I have had it. The nurse came back last Friday and took another blood test. According to her it shouldn’t be to
long before I can start. The day I have the first tablet the nurse has to be with you to take my blood pressure ect. I expect it’s the same for everyone. I’m excited and nervous at the same time. My quality of life is not good so in my eyes I have to try everything that might help me. I will keep in touch and tell you the outcome.
Hi. Received my Mayzent on Monday but can’t start it until next Monday so that a nurse has to be with me. So frustrating! How are you getting on with yours? Are you on the same dose as me? Start with 0.25mg then upto 1.25mg on day 5 then 2mg there after. Take care
Hi, yes i’m on 2mg now same as you will be.
I know its frustrating to have to wait, but at least you know they are keeping a close eye on you. I feel a bit like i’ve just left to get on with it. The IQVIA nurse keeps in touch by phone and I’ve borrowed a blood pressure monitor from work to keep an eye on my BP, but that is nothing to do with the MS team.
It will be interesting to hear what the nurse does for you, what checks she does - let me know will you?
Today was the 2nd day of full strength tablets, and no problems at all. Take care
Glad to hear you are ok. I have low BP and I also have a BP machine. I will tell you about my visit next week.
Best Regards Tina
Hi started my Mayzent today no problems as yet 
The nurse came took my BP and pulse both normal.
Ringing me towards the end of the week and then coming back to take blood in a month. I hope and pray this medication helps. I’m afraid MS has ruined my life and any help I can get I will take . Take care
Hi, glad you are doing ok. I’ve been on the full strength now for a week and other than a few niggley headaches and being abit loose (which could be down to anything) I’ve had no problems - long may it continue for us both and anyone else who goes on medication. Take care
Hi, Im guessing you have now finished your titration dose now? How are
you getting on??
hope you keep safe, Ali
Not brilliant I feel very tired and achy. Don’t know if
I have a virus or not. My 2m dose starts on Saturday. I will keep going. How are you?
sorry to hear you are not feeling well - maybe the weather not helping?
Im doing ok with the tablets - a few niggles but nothing to worry about and it may not even be the tablets.
im more bothered about brain overload - we have had a new operating system in work and had a lady to train us, but i cant take it in, its like my head is a brick wall and all the information is being bounced off. I was actually crying in work yesterday and that is so not like me!! Ive let the others get trained more and they can teach me at a slower pace.
hopefully you will get used to the tablets and any problems settle down, I think it can take a couple of weeks. And if it is a virus then it soon packs a bag and goes away!
Take care
Hi Ali. You are doing so well still working! I know I couldn’t. The brain fog is so hard if I watch something on tv sometimes the next night I have forgotten what I have watched. How do you cope with the fatigue at work? I normally have a nap in the afternoon! I know a lot of people on this forum are very positive about this shit illness but I’m not one of them. In my eyes this has ruined my life. Is there any way you can get round your problem at work? Let’s cross our fingers and hope that Mayzent can preform a miracle. I don’t think so! Take care Ali
Hi Tina, I have cut down on the hours i work and my boss is great, always asking if i need anything to help. when im home and weekends i really dont do anything much, my daughter does most of the housework and cooking. im fine with things ive been doing for years and ive learnt to block out noise and excess chatter - its just this week with new procedures im struggling.
My thought are soon my daughter will leave home and my husband works long hours, if i didnt work i would be bored and lonely, so i will keep going as long as i can…or until my boss retires cos i doubt i would get another boss as good as him.
my worry with the tablet was the side effects, and as i dont seem to suffer with any, if the tablets can help even a bit, then they are worth it.
how long have you suffered with ms? what are your main symptoms?
Take care, Ali
Hi Ali. My main symptoms are fatigue/mobility/brain
Fog. I’ve had ms about 8/9 years. In 2011 I had a life saving opp was in hospital for 4 1/2 months on a feeding machine. A lot of people think it was the trauma of this opp that started my ms. Nobody knows.
You sound a lot younger than me so I understand why you are still working. My partner is retired so he is at home all the time so I can understand your point of being lonely if you gave up work. I feel a lot better today so it might just be just getting used to the Mayzent. Take care x
Hi Tina, your symptoms are the same as mine although i still get around with a stick and FES device. I’ve only been diagnosed for a year but apparently have had ms for 20 plus years - maybe the trauma of watching my dad die, he had a brain tumor. Double vision was my first symptom.
Im glad you are feeling better today,long may it continue. You sound like you have been through the mill. Take care x