A common cause of unscheduled hospital admissions and sadly death in people with MS is aspiration pneumonia. This MS-Selfie Newsletter explains how to prevent it.
"It is recommended that pneumococcal vaccine should preferably be given at least two weeks before elective splenectomy or the initiation of chemotherapy or other immunosuppressive treatment."
In an ideal world, you should have had it before alemtuzumab. We as a centre have generally not been mandating it prior to alemtuzumab. However, I think we should change our practice. We have been mandating it prior to anti-CD20 therapy.
Very informative. I have GERD on top of MS and spent one entire summer in and out of the hospital with bouts of aspiration pneumonia caused by asperating stomach acid in my sleep. I would wake up choking on the acid and then within an hour spike a high fever and off to the ER i would go to spend nearly a week in the hospital each time. The first bout they discovered i also had emboli in my left lung as well as pneumonia in both lungs. there 5 clots there in the lung so that visit was over a week. since that summer and we figured out how to control the causing issue i have had only 2 events that sent me to the hospital with the most recent one being about 18 months ago. I do have swallowing issues tho and I am ever more careful about my position and posture when eating or drinking. one thing I have found that does help is drinking thru a straw. I got some of those silicone straws because i drink a lot of water and to be able to keep my head in the forward position is helpful when I am drinking to keep the water going down the correct "pipe" so I don't choke.. the last pneumonia bout they did a swallow test and i do have weaknesses on my left side and i started cutting food into smaller bites so if it goes down before i have thoroughly chewed it up it tends to go to the proper direction.. knock wood, i haven't had issues with this since the last bout in the middle of the night but it is terrifying to wake up and not be able to clear your airway of stomach acid.. ugh!
My husband is in the hospital right now with his third or fourth bout of aspiration pneumonia. He has said he did not want to be on hospice at this time. Can you talk about any experience you have with permanent ventilation for people with MS we know if some people who have been able to manage it at home for years and have done pretty well.
Laurel, my only experience with ventilation in pwMS is in patients who have needed it temporarily for a brainstem relapse. These patients have only required it for a few weeks and have been extubated successfully. I have several patients who use a nocturnal CPAP (continuous positive airway pressure) mask, which is a form of non-invasive ventilation. The decision to ventilate someone with advanced MS is a difficult one and needs to be discussed with the patient. The question that needs to be asked is what is the objective of the ventilation and how it will affect the quality of life of the patient? Rarely does it improved quality of life and if this is the case I would advise against it.
Really interesting and informative- I will push more with my neurologist now, who largely brushed off my concern about the strength of my respiratory muscles
Thank you - as always, written and explained very well. You have covered a topic that is often dealt with ‘…I’m fine …’
For myself, being 100% in a wheelchair/seated for the last couple of years, has started to affect my lung function. This is definitely one of the scary symptoms of MS, that is not always picked up in its initial stage. I don’t mean ‘pre-empting’ as such, just less - regarding it as an ‘inevitability’ of the disease.
Your ‘in-evasive’ and informative posts are directed at managing the disease and are an essential guide/first port of call ~ which In turn, enable ME, the patient, better informed about what is happening to my body. Thank you
Thanks again for all the information . Unfortunately, I receive none of this from my healthcare! Since my diagnosis from MS you and Now MS Blog have made me better advocate for myself.
Hi, I have RRMS, completed round 2 of Alemtuzumab March 2020. I am 59, should I have the pneumococcal vaccine?
"It is recommended that pneumococcal vaccine should preferably be given at least two weeks before elective splenectomy or the initiation of chemotherapy or other immunosuppressive treatment."
https://www.medicines.org.uk/emc/product/1061/smpc#gref
In an ideal world, you should have had it before alemtuzumab. We as a centre have generally not been mandating it prior to alemtuzumab. However, I think we should change our practice. We have been mandating it prior to anti-CD20 therapy.
Very informative. I have GERD on top of MS and spent one entire summer in and out of the hospital with bouts of aspiration pneumonia caused by asperating stomach acid in my sleep. I would wake up choking on the acid and then within an hour spike a high fever and off to the ER i would go to spend nearly a week in the hospital each time. The first bout they discovered i also had emboli in my left lung as well as pneumonia in both lungs. there 5 clots there in the lung so that visit was over a week. since that summer and we figured out how to control the causing issue i have had only 2 events that sent me to the hospital with the most recent one being about 18 months ago. I do have swallowing issues tho and I am ever more careful about my position and posture when eating or drinking. one thing I have found that does help is drinking thru a straw. I got some of those silicone straws because i drink a lot of water and to be able to keep my head in the forward position is helpful when I am drinking to keep the water going down the correct "pipe" so I don't choke.. the last pneumonia bout they did a swallow test and i do have weaknesses on my left side and i started cutting food into smaller bites so if it goes down before i have thoroughly chewed it up it tends to go to the proper direction.. knock wood, i haven't had issues with this since the last bout in the middle of the night but it is terrifying to wake up and not be able to clear your airway of stomach acid.. ugh!
My husband is in the hospital right now with his third or fourth bout of aspiration pneumonia. He has said he did not want to be on hospice at this time. Can you talk about any experience you have with permanent ventilation for people with MS we know if some people who have been able to manage it at home for years and have done pretty well.
Laurel, my only experience with ventilation in pwMS is in patients who have needed it temporarily for a brainstem relapse. These patients have only required it for a few weeks and have been extubated successfully. I have several patients who use a nocturnal CPAP (continuous positive airway pressure) mask, which is a form of non-invasive ventilation. The decision to ventilate someone with advanced MS is a difficult one and needs to be discussed with the patient. The question that needs to be asked is what is the objective of the ventilation and how it will affect the quality of life of the patient? Rarely does it improved quality of life and if this is the case I would advise against it.
Really interesting and informative- I will push more with my neurologist now, who largely brushed off my concern about the strength of my respiratory muscles
Thank you - as always, written and explained very well. You have covered a topic that is often dealt with ‘…I’m fine …’
For myself, being 100% in a wheelchair/seated for the last couple of years, has started to affect my lung function. This is definitely one of the scary symptoms of MS, that is not always picked up in its initial stage. I don’t mean ‘pre-empting’ as such, just less - regarding it as an ‘inevitability’ of the disease.
Your ‘in-evasive’ and informative posts are directed at managing the disease and are an essential guide/first port of call ~ which In turn, enable ME, the patient, better informed about what is happening to my body. Thank you
Thanks again for all the information . Unfortunately, I receive none of this from my healthcare! Since my diagnosis from MS you and Now MS Blog have made me better advocate for myself.
🙏
Is there a relation with MS-hugs?