In this MS-Selfie podcast, I try and answer some questions posed by one of my MSology trainees about rebound post-fingolimod. I thought I would share the answers with you.
Personally, I welcome any additional info on MS DMTs and their potential associated issues. With regards to Fingolimod & the known risks associated with this drug, has it’s use been declining in recent years ? How long can one maintain an immunosuppressed state on such drugs without developing complications ?
I would also like to add that you can get rebound reactions coming off Tecfedra. I had this happen to me, however when I contacted my clinic they said that they weren't aware of this. There was no bridging treatment and over the following months I suffered the rebound reaction followed by two obvious relapses, and increased disability. This phenomenon needs to be better recognised and managed. And patients need to be aware so they can push for support, and not be dismissed because their team aren't aware of rebound reactions to differing DMT.
Thank you for highlighting that YES rebound is REAL! I was flat on my back within a few weeks of starting a "rest period" to let my white blood cells recover. At the time a few years ago it seemed a surprise to the neurology team but now it seems that relapse would be an expected risk. I agree one does not want to be scared by info ... but it would have been better to know about the risk and be better prepared for being bed ridden. Now I know that relapse risk I have agreed to take the risk of lower immune system in order to stay on the pills. My choice, my life.
Many thanks for posting this really enjoyed listening to this and the detail you provided. Just wondering if you have used pulsed steroids or pulsed cyclophosphamide in washout periods prior to AHSCT and how effective these are in your experience.
No personal experience, but I know some AHSCT units do this. Please note that when I refer patients for AHSCT in our centre their immediate care is taken over by my colleague, Dr Ben Turner, who is our AHSCT lead. He manages the screening and their management pre- and post-AHSCT.
Hi Gavin, This is newsletter and podcast is great work and so much effort goes into . Thank you !
I really like the info . The audio format is great and easy to listen . The text version has the ease of focussed re read / search later . Can the audio be transcribed into text ( digitally ?) or is that too much to ask of your time ?
This info will be included in the individual DMT Newsletters. These will trickle out over the next 6-12 months. This is a project in motion. Hope to see you at MENACTRIMS.
Personally I find some of your more technical newsletters quite scary and even depressing as they make me almost too aware of the limitations and possible pitfalls of various treatments as well as how terrible the disease can become. I'm trying to keep a very positive outlook and therefore they're not for me. I appreciate it's a fine line between information and too much information especially for someone without much scientific knowledge. It raises interesting questions for me regarding my relationship with my disease and how much information I Personally want.
The important thing is that you have choice and don't need to read or listen to anything you don't want to.
However, I don't think sugar-coating information or looking at everything through rose-tinted glasses is helpful either. By learning about the potential complications of untreated or under-treated MS you get an idea of what we are dealing with. Knowing about brain volume loss, cognitive impairment, bowel problems, bladder problems, etc. is a wake-up call and is why we have to treat MS early and effectively to prevent these complications. By knowing this it allows you to balance the risks and benefits of treatment.
Thank you for taking the time to reply. Unfortunately I don't feel I am given any choice. I agreed to start Siponimod, that was at hhe end of August. I'm still waiting to have preliminary tests..before that I repeatedly asked about treatment and was told there was nothing for me.
Patients CANNOT have it both ways. They WANT to know and then they are SCARED because there is too much info. No doc knows how much is too much. So, while the info is scary, or MAY BE scary, cold facts are also important to know or you will have the fear of the unknown !!!!!
Personally, I welcome any additional info on MS DMTs and their potential associated issues. With regards to Fingolimod & the known risks associated with this drug, has it’s use been declining in recent years ? How long can one maintain an immunosuppressed state on such drugs without developing complications ?
Re: "How long can one maintain an immunosuppressed state on such drugs without developing complications?"
A critical question. I suspect not forever, particularly, in the older person with MS (>55 yrs) due to immunosenescence.
I would also like to add that you can get rebound reactions coming off Tecfedra. I had this happen to me, however when I contacted my clinic they said that they weren't aware of this. There was no bridging treatment and over the following months I suffered the rebound reaction followed by two obvious relapses, and increased disability. This phenomenon needs to be better recognised and managed. And patients need to be aware so they can push for support, and not be dismissed because their team aren't aware of rebound reactions to differing DMT.
Thank you for sharing this as a podcast, detailed and very useful information as always.
My consultant neurologist will be pleased I don't have it in text form as he loves to hear my highlighted ‘Prof G said………….’ facts :-) :-)
Thank you for highlighting that YES rebound is REAL! I was flat on my back within a few weeks of starting a "rest period" to let my white blood cells recover. At the time a few years ago it seemed a surprise to the neurology team but now it seems that relapse would be an expected risk. I agree one does not want to be scared by info ... but it would have been better to know about the risk and be better prepared for being bed ridden. Now I know that relapse risk I have agreed to take the risk of lower immune system in order to stay on the pills. My choice, my life.
Many thanks for posting this really enjoyed listening to this and the detail you provided. Just wondering if you have used pulsed steroids or pulsed cyclophosphamide in washout periods prior to AHSCT and how effective these are in your experience.
No personal experience, but I know some AHSCT units do this. Please note that when I refer patients for AHSCT in our centre their immediate care is taken over by my colleague, Dr Ben Turner, who is our AHSCT lead. He manages the screening and their management pre- and post-AHSCT.
Hi Gavin, This is newsletter and podcast is great work and so much effort goes into . Thank you !
I really like the info . The audio format is great and easy to listen . The text version has the ease of focussed re read / search later . Can the audio be transcribed into text ( digitally ?) or is that too much to ask of your time ?
Hi Anu
This info will be included in the individual DMT Newsletters. These will trickle out over the next 6-12 months. This is a project in motion. Hope to see you at MENACTRIMS.
Gavin
P.S. These Newsletters are meant for pwMS ;-)
Personally I find some of your more technical newsletters quite scary and even depressing as they make me almost too aware of the limitations and possible pitfalls of various treatments as well as how terrible the disease can become. I'm trying to keep a very positive outlook and therefore they're not for me. I appreciate it's a fine line between information and too much information especially for someone without much scientific knowledge. It raises interesting questions for me regarding my relationship with my disease and how much information I Personally want.
The important thing is that you have choice and don't need to read or listen to anything you don't want to.
However, I don't think sugar-coating information or looking at everything through rose-tinted glasses is helpful either. By learning about the potential complications of untreated or under-treated MS you get an idea of what we are dealing with. Knowing about brain volume loss, cognitive impairment, bowel problems, bladder problems, etc. is a wake-up call and is why we have to treat MS early and effectively to prevent these complications. By knowing this it allows you to balance the risks and benefits of treatment.
Thank you for taking the time to reply. Unfortunately I don't feel I am given any choice. I agreed to start Siponimod, that was at hhe end of August. I'm still waiting to have preliminary tests..before that I repeatedly asked about treatment and was told there was nothing for me.
Patients CANNOT have it both ways. They WANT to know and then they are SCARED because there is too much info. No doc knows how much is too much. So, while the info is scary, or MAY BE scary, cold facts are also important to know or you will have the fear of the unknown !!!!!