Dizzy and I have been feeling a little sorry for ourselves the last few weeks. After two years of completely stable MRI’s, our last one came back a little different: new activity, with two active lesions. 🙁
Now with MS, this is all part of the adventure, but Dizzy and I had been feeling fine, and we were 100% sure that all would be fine! We were rather excited about having 3 years of a sleepy MS.
We did have a little cry, but we are now on the mission (given to us by our nurse) of deciding between stronger medication, which will hopefully get our MS back to being on its best behaviour.
Our options are Gilenya, Cladribine and Ocrevus. And we still have a month to decide, when we see our nurse and neurologist within a week. As I always say, they all seem a little scary, but we will definitely be giving one a try. J And thankfully none of them are self-injections, as I still pass out whenever I see a needle… 🙂
Have any of you had experience with these medications, and how have you found them? 🙂 xxx
I am taking Ocrevus… absolutely no problems. Now it’s only twice a year infusions and no more daily meds.
Twice a year isn’t much at all, which is one of the reasons why it’s looking appealing. But I am terrified of needles! Do they cover it up well? 🙂 xxx
Oh sweetie that sucks to hear. I’ve had great luck with Tysabri, but as you know just like how everyone’s ms is different, so is their response to drugs. I’m wishing you the best of luck on whatever you decide
Sorry to hear your news but there will be a good treatment for you. I was diagnosed last year and given the choice of Lemtrada or Ocrevus, I was thinking about Lemtrada but then it was withdrawn anyway! So I am on Ocrevus and happy with it. Like you I was worried about injecting myself so it’s great that I didn’t have to! xx
I was offered Lemtrada, but it was too scary for me! I know loads of people who have done really well on it, but I always seem to focus on the possible side effects. xx How is ocrevus going? Do you have any side effects from it? I have heard it is really good. xxx
Thank you Grace. xx I know a lot of people who do really well on Tysabri, but at the moment I have not been given that option. xx How are you doing? xxx
over worked and underpaid?….
Sorry to see that you have had a bump in the MS life. I am not belittling it by calling it a bump. I do so in the hope that things will smooth our again with the right medication
Hehe, I like the word bump! Makes it sound much nicer and more manageable. 🙂 xx How are you doing? xxx
I am well although I do have odd pandemic related dreams at night so I think I have some subliminal stress about it. But I am riding 5 days a week so that keeps me happy and fairly stress free. Did you settle on one of the medications to try.?
I think most of us are stressed about it in some way. It’s hard not to be at the moment. 🙁 I am glad you are riding 5 days a week though. I had an email to say my riding group would be starting back in a month, which I am really excited about! I haven’t seen Ruby is so long, and I have really missed her! xx I think I am nearly decided. I see my nurse on the 6th, so will ask her a few questions and then make my final decision! 🙂 xxx
I have been on 2 of those medications. Gilenya is a once a day pill. I was doing pretty good on it, but it always made me nervous if I was expecting to go out of town and my shipment didn’t arrive yet, so I talked it over with my neurologist and we decided that ocrevus would be better because a twice a year infusion is easier to work around, and a monthly delivery 📦. That is my take. Those two medications seem to do very well for me. I feel confident enough to go back to school, and I hope to be back in the workforce again.
Gilenya worked very well for me for a good few years ( about 7) in that I had no side effects and worked full time.
Things have deteriorated recently and I am now probably secondary, working part time and waiting to change meds for the first time to Mayzent.
I am older than you .
The era of injecting ms drugs is pretty much over, so don’t worry about that.
I made my original decisions on which drug to take based on which one had the least reported impact on depression, as having Ms makes us all vulnerable to depression.
You need to draw up your own list of importance and don’t be afraid to change .
Good luck always 👒
Thank you, as that is a valid point. I don’t suffer with depression, but I do badly with anxiety and don’t need anything that’s going to make that worse! 🙂 x I think I am leaning towards cladribine, but I still have a lot of questions for the nurse before I make my final decision. xx How are you doing? xxx
I like that about ocrevus and cladribine, as they both remove the worry about regular prescriptions. xx That is amazing that it has also made you feel more confident for school and work. What are you doing at school? 🙂 xx
Sending you and Dizzy hugs, good wishes and prayers, my friend. <3
Thank you Felicia. I hope you are doing ok. 🙂 xxx
Ah, Dizzy. PPMS. HUGE needle issues. I do Ocrevus. They usually put the needle in my hand. I just don’t look for 4 – 5 hours
Hehe, you sound like me! I had to have a drip once, and then they left the needle in. Nearly 24 hours of not moving or looking at my hand!! 🙂 How do you find ocrevus? Is the infusion ok, and do you get any side effects? xxx
I’m sorry to hear this Heather – I’m sure it was disappointing to get the news of active lesions. I hope whichever treatment you decide on works great for you. Wishing you all the best as you go forward with your decision. Sending hugs to you and Dizzy!
Thank you so much Terri. I think I have nearly decided which one, but I do have a lot of questions for my nurse before making my final decision. I see her on the 6th, so not too long. xx How have you been? xxx
I hope your nurse is able to answer all your questions and help you feel comfortable that you’ve made the right decision. I’ve been doing well, thanks. The weather is finally starting to cool down a little here, which makes it nice to spend some time outside.😊
I’m so sorry to read this, and I hope that the treatment you eventually choose works first time and doesn’t give you any problems.
Sending you good vibes through the ether, and heaps of love too ~ Cobs. x
I’m sorry to hear this news Heather – I’m glad Dizzy was there to give you a big hug as none of us can be there personally to do that honor. I am sending hugs to both of you now and please know I always keep you in my daily prayers as long as I’ve known you. I’m sorry I can’t contribute to the conversation of treatments … I hope others’ input and the good advice of your practitioners will get you on the road to stabilizing your MS once again. Take care.
Thank you so much Linda. I think I am near my decision, but I do have a lot of questions for my nurse before I make my final decision. I see her on the 6th, so not too long to wait. xx I have joined the fb groups for each one aswell, so I have been having a nosey at people’s stories on each of them, which has really helped. xx Thank you so much for your continuous support, it means the world to Dizzy and I. xxx
That is good you have support groups which help not only to boost your knowledge about different treatments, but also boost your spirits – that is important right now as you have a health crisis and are also mindful of COVID rearing its ugly head everywhere. I will continue to keep you in my prayers Heather …. love to you and Dizzy.