Day 2 of mavenclad

[Turtlepie]

Today has not been much different than yesterday. Still that nasty taste in my mouth. Had a ruff time going to sleep last night. I did get a slight headache but I think that is from not getting enough sleep. I always get a headache when I don't sleep well. I am hopeful that I will sleep better tonight. I want to thank you all for your support and encouragement. I will do my best to keep you updated on what is going on with me. And not just while I am taking the pills but through the blood work at 9 weeks 6 months and 9 months and next years dosing and beyond.

[jimeka]

Thank you. You are the first person I know of who is taking this medication so I will be following your progress with interest, Blessings Jimeka 🤗

[Turtlepie in reply to jimeka]

I don't know anyone taking it either. I will do my best to give detailed updates. I want everyone to know that I was 3 and a half months with not taking any meds before taking my first dose of this medication. I was feeling good and just my normal problems that I have had over the last 26 years. Which is every day spasms somewhere on my body dealing with fatigue but not every day sleep problems but not all the time. I get around good still drive myself around my small rural town. As long as I pace myself I really don't have to many problems. My doctor won't release me to work because I am a workaholic and would not be able to go back to work after working a couple of days or so. I am best staying home do my house work in moderation and doing my favorite hobby crocheting

[mepilot61]

Prayers that you sleep well tonight!!!

[Turtlepie in reply to mepilot61]

Thank you so much

[Peruzzot]

Would strong mints help with the taste in your mouth? You said that the hard candy wasn't helping.

[Turtlepie in reply to Peruzzot]

The peppermint is working better than the hardcandy how ever my favorite wine did great for about an hour

[Peruzzot in reply to Turtlepie]

I'll keep that in mind if I ever switch to mavenclad. But you'll have to drink the wine for me. I can't drink it. I'm allergic to the alcohol. Maybe grape juice would have the same effect for me.🤔

[Turtlepie in reply to Peruzzot]

That's not fun but I would be happy to do that for you lol. Could not hurt to try grape juice

[greaterexp]

Thank you so much for reporting in! We’re hoping and praying for great results!

[Turtlepie in reply to greaterexp]

Your welcome. I want to be of help to others. And thank you I love the support here

[rjoneslaw]

good to hear. Have u asked ur dr about the taste and what to do or the drug company?

[Turtlepie in reply to rjoneslaw]

I talked to the drug company and they have nothing in their studies of anyone having this problem. But I am trying what I do after iv steroids abs all the suggestions from everyone here and family and friends. I did find that my favorite wine keeps it away for over an hour. Thank you for your concern and advice

[rjoneslaw in reply to Turtlepie]

I hope it subsides good luck with everything

[Turtlepie in reply to rjoneslaw]

Thank you

[janetb1968]

So hope your headaches get better and u sleep better tonight. I’ve heard of Mavenclad but have no dealings with it, I’m on Tysabri xxx

[Turtlepie in reply to janetb1968]

Mavenclad just got FDA approval in March last year is what I was told. After 10 years in clinical trials. When I first heard of it and was reading up on it I was really scared and worried about taking it. But after failure of 3 other medicines I figured why not. My headache is better this morning and I did sleep better last night. Thank you. I hope that you do well on tysabri

[janetb1968 in reply to Turtlepie]

Thank u honey xxxx ❤️

[positiveness]

It's great to see another post from you. Have you ever thought of writing a journal about your MS and Mavenclad personal experience? I am currently doing this with my Ocrevus experience.

[Turtlepie in reply to positiveness]

I will do my best to post how I am doing. I had thought about it. Now that you mentioned it may be a book on my and my life with MS. I have almost 27 years of experience. That's wonderful you are doing that. Good luck to you and I know that your journal will be a great comfort and help

[positiveness in reply to Turtlepie]

Thank you so much and I hope so.

[Kenu in reply to Turtlepie]

Thanks for posting your status👍. My neurologist had mentioned this to me last fall but I wanted to hear the outcome from others first for side effects. Sounds like you are doing pretty well on it👍. Ken 🐾🐾

[Turtlepie in reply to Kenu]

Your welcome. I feel pretty lucky right now. Good luck to you.

[positiveness]

I have some days I don't write much and other days I write more with my phone.

[Fancy1959]

Yes please give us update and thanks for the information. I went to a very educational meeting about mavenclad and I really wanted to try it but my doctor said right now he wanted me to stay on ocrevus. Something about the safety Factor wasn't that go with Mae the clad but from what I've read it looks okay to me!

[Turtlepie in reply to Fancy1959]

I think that this needs more studies but in my time with MS I have been on 5 different medications and now number 6. If I can take this and never take anything else the rest of My life that will be great. I look forward to sharing my experiences

[LAS3]

Good morning...finish yr 1/week1 about two days ago. Felt fine while taking the meds, but fatigue is starting to rear it’s ugly little head. My advice would be to drink plenty of water and I made sure I had something on my stomach. Mavenclad fb group was a tremendous support...🧡🎗🙏🏾

[Turtlepie in reply to LAS3]

Sorry for the fatigue. Thank you for the advice. I do drink lots of water and I always have a snack as my regular routine even before starting this medication. I hope the fatigue doesn't stay too long with you and you continue to do well

[LAS3 in reply to Turtlepie]

My hope for you as well....

[Turtlepie in reply to LAS3]

😊