I’ve been on Ocrelizumab since last July and previous to that was on Fingolimod for a while too.
I try not to get too anxious about the immunosuppression. I’m not going to let that stop me enjoying life and spending time with other people. Do not underestimate how important your own happiness and avoidance of stress is in keeping your immune system as healthy as possible. I recently went interrailing in France and Spain with my husband for a fortnight, visiting old friends. I meant to take masks for the trains, but forgot (MS brain!) and I was fine. No doubt partly because I enjoyed it so much! It is important to remember that suppression does not mean you have no immunity. It only suppresses one type of immune cell, lymphocytes, and not totally. You should be monitored to check if you are getting lymphopenia I had some problems with UTIs for a while but that has improved since I started using vaginal oestrogen. Highly recommend, in fact the doctor who prescribed said she thought all women over 40 should be using it! I would say, just be aware of side effects and keep your eyes open for them. I got a few moles checked when I was on Fingolimod because I was concerned about skin cancer. And yeah, I’m more diligent than I used to be about hand washing, and carry a hand sanitiser.
Thank you Victoria, and these are all really useful tips re DMT immunosuppression, especially the mindset to not let it take over your life, and the reminder that it’s not taking away all your immunity! Interesting what you said about the side effects of Fingolimod, that particular side effect is also a consideration for Siponimod. And I would definitely agree about the Oestrogen!
Great to see you back Jane. Well done, so proud of you. Good luck with your new drugs and keep doing what you are doing to get through the tougher times. It obviously worked for you and so happy you are in a more positive and optimistic place now. Lots of love xx
Glad you've come through the anxiety and had supports to keep it from crushing you. I understand wanting some distance before spending time thinking or writing about it. It's a nasty beast.
Your roster of future topics is of great interest. I find myself absolutely green with envy more often than I care to admit; sometimes my mobility aids frustrate me nearly as much as they assist me; and the more I withdraw because it's easier, the more entrenched my isolation becomes.
The immunosuppressant effects of my treatment (ocrelizumab, also the only one available to me) contribute to the isolation. Almost everywhere I go in public, I wear a mask. Socializing outdoors was my preferred approach until heat became one of the most debilitating triggers I've experienced.
Timing vaccinations for maximum effect between treatments is an ongoing challenge.
Thank you so much for your comments Melissa. It’s good to know my planned topics are of interest! Hearing about your experience of being immunosuppressed is very helpful, but I’m sorry to hear that part of your strategy (to socialise outside) is thwarted by the heat. I would be the same. It seems we cannot win!
I’m on a DMT that suppresses the immune system. Summer is easy as you can socialise outside. I carry hand sanitiser everywhere, never share drinks and try to be mindful about touching my face in public. Winter is harder and I’m getting better at asking people if they have any cold symptoms before I see them and sticking to my guns and rescheduling. I had the flu over Christmas and it wiped me out for months. It’s just not worth it if I can take that ounce of prevention.
Thank you Regina, this is so helpful. I’m already pretty mindful in flu season as colds etc really exacerbate my symptoms even without being immunosuppressed. Sorry to hear you had such a long bout of flu recently. Really appreciate your comments 😊
Jane lovely to see your writing again, I have missed your blogs.
So sorry to hear that this weather is so debilitating for you.
We’ve just comeback from Barbados, so weather wise, as hot here as it was there! Personally I want to go to Cornwall for my next holiday, can’t believe I’m at this age and have never been.
Look forward to our next get together with the ‘girls’
Hi Jane, it's lovely to see your writing again. xo
I can't speak to being immunosuppressed on Siponimod - but I can share thoughts about how I care for my mother, who's immunocompromised due to daily cancer drug therapy e.g.
I recommend asking your GP about Flu & COVID vaccination boosters. Having gone through Covid+pneumonia with Mum, I'd dial for emergency services more readily with an increasing temp. We're very careful about interacting with people. We proved the case that asymptomatic people can be carriers and spread Covid.
So lovely to hear from you Jane! Big hugs to you for going through a rough time - I am very glad to hear you have a solid support network around you. That's invaluable.
As for immune-suppressants, I don't think ocreluzimab (which has been my drug of choice for a decade now) goes as hard as siponimod, but it's a b-cell modulator so it definitely impacts the immune system. There seem to be posts almost daily in the Reddit MS community about people freaking out about immune-suppressant stuff and declaring they get sick CONSTANTLY but that has not been my experience.
I sometimes mask on planes, especially in the winter months but definitely not consistently; I am very on top of vaccinations, do make sure you top up everything before you start, your body won't take up the vaccine as well once you're on the drug; but other than that I live a pretty normal and largely indifferent to infection risk life and so far that's worked for me.
If you haven't got the shingles vaccine and the pneumonia vaccine yet go get them. My neuro was right onto those two for me in particular. Hopefully NHS will give you a freebie on them as they're not cheap (but having had shingles already, I would pay through the nose not to do that again).
Hi Jane. Nice to read your words again.
I’ve been on Ocrelizumab since last July and previous to that was on Fingolimod for a while too.
I try not to get too anxious about the immunosuppression. I’m not going to let that stop me enjoying life and spending time with other people. Do not underestimate how important your own happiness and avoidance of stress is in keeping your immune system as healthy as possible. I recently went interrailing in France and Spain with my husband for a fortnight, visiting old friends. I meant to take masks for the trains, but forgot (MS brain!) and I was fine. No doubt partly because I enjoyed it so much! It is important to remember that suppression does not mean you have no immunity. It only suppresses one type of immune cell, lymphocytes, and not totally. You should be monitored to check if you are getting lymphopenia I had some problems with UTIs for a while but that has improved since I started using vaginal oestrogen. Highly recommend, in fact the doctor who prescribed said she thought all women over 40 should be using it! I would say, just be aware of side effects and keep your eyes open for them. I got a few moles checked when I was on Fingolimod because I was concerned about skin cancer. And yeah, I’m more diligent than I used to be about hand washing, and carry a hand sanitiser.
I look forward to hearing how you get on with it.
Thank you Victoria, and these are all really useful tips re DMT immunosuppression, especially the mindset to not let it take over your life, and the reminder that it’s not taking away all your immunity! Interesting what you said about the side effects of Fingolimod, that particular side effect is also a consideration for Siponimod. And I would definitely agree about the Oestrogen!
So pleased you are back, bashing blogs out on the keyboard. It is a strange form of therapy, Looking forward to further thoughts.
Thank you, much appreciated, and yes indeed it is! Am I still on your email list by the way, I don’t seem to get your posts in my inbox anymore?
Jane, it's so wonderful to read your writing again. I love reading your work on here and can't wait to read more.
Thank you so much Chris, that really means a lot 😊
Great to see you back Jane. Well done, so proud of you. Good luck with your new drugs and keep doing what you are doing to get through the tougher times. It obviously worked for you and so happy you are in a more positive and optimistic place now. Lots of love xx
Thanks Deb, and for all your support even when things were tough for you too 🙏
Glad you've come through the anxiety and had supports to keep it from crushing you. I understand wanting some distance before spending time thinking or writing about it. It's a nasty beast.
Your roster of future topics is of great interest. I find myself absolutely green with envy more often than I care to admit; sometimes my mobility aids frustrate me nearly as much as they assist me; and the more I withdraw because it's easier, the more entrenched my isolation becomes.
The immunosuppressant effects of my treatment (ocrelizumab, also the only one available to me) contribute to the isolation. Almost everywhere I go in public, I wear a mask. Socializing outdoors was my preferred approach until heat became one of the most debilitating triggers I've experienced.
Timing vaccinations for maximum effect between treatments is an ongoing challenge.
Thank you so much for your comments Melissa. It’s good to know my planned topics are of interest! Hearing about your experience of being immunosuppressed is very helpful, but I’m sorry to hear that part of your strategy (to socialise outside) is thwarted by the heat. I would be the same. It seems we cannot win!
I’m on a DMT that suppresses the immune system. Summer is easy as you can socialise outside. I carry hand sanitiser everywhere, never share drinks and try to be mindful about touching my face in public. Winter is harder and I’m getting better at asking people if they have any cold symptoms before I see them and sticking to my guns and rescheduling. I had the flu over Christmas and it wiped me out for months. It’s just not worth it if I can take that ounce of prevention.
Thank you Regina, this is so helpful. I’m already pretty mindful in flu season as colds etc really exacerbate my symptoms even without being immunosuppressed. Sorry to hear you had such a long bout of flu recently. Really appreciate your comments 😊
Jane lovely to see your writing again, I have missed your blogs.
So sorry to hear that this weather is so debilitating for you.
We’ve just comeback from Barbados, so weather wise, as hot here as it was there! Personally I want to go to Cornwall for my next holiday, can’t believe I’m at this age and have never been.
Look forward to our next get together with the ‘girls’
Aw thanks Maggs, it’s good to be back. Cornwall, Barbados, both sound like great choices… I have only been to the former!
Hope we can organise another get together soon, lots of love xx
Lots of love Maggs xx
Ps prev message shot off before I had finished🙄
SOOOOOO happy to read this again thank you Jane xx
I made it! Thank you so much for reading 😊
Hi Jane, it's lovely to see your writing again. xo
I can't speak to being immunosuppressed on Siponimod - but I can share thoughts about how I care for my mother, who's immunocompromised due to daily cancer drug therapy e.g.
I recommend asking your GP about Flu & COVID vaccination boosters. Having gone through Covid+pneumonia with Mum, I'd dial for emergency services more readily with an increasing temp. We're very careful about interacting with people. We proved the case that asymptomatic people can be carriers and spread Covid.
Thank you so much for sharing your experiences Victoria, that’s really helpful and I appreciate it 🙏
You're welcome, Jane.
I'm guessing you'll get fairly regular blood tests, if you don't already. I'll be thinking of you. xo
So lovely to hear from you Jane! Big hugs to you for going through a rough time - I am very glad to hear you have a solid support network around you. That's invaluable.
As for immune-suppressants, I don't think ocreluzimab (which has been my drug of choice for a decade now) goes as hard as siponimod, but it's a b-cell modulator so it definitely impacts the immune system. There seem to be posts almost daily in the Reddit MS community about people freaking out about immune-suppressant stuff and declaring they get sick CONSTANTLY but that has not been my experience.
I sometimes mask on planes, especially in the winter months but definitely not consistently; I am very on top of vaccinations, do make sure you top up everything before you start, your body won't take up the vaccine as well once you're on the drug; but other than that I live a pretty normal and largely indifferent to infection risk life and so far that's worked for me.
If you haven't got the shingles vaccine and the pneumonia vaccine yet go get them. My neuro was right onto those two for me in particular. Hopefully NHS will give you a freebie on them as they're not cheap (but having had shingles already, I would pay through the nose not to do that again).
Thank you so much Eliza. And your tips re immunosuppression are invaluable, I really appreciate you taking the time 🤗