Covid-19 vaccines and DMTs?

[palmtree]

This is all something to think about, isn’t it? I have been planning to get the vaccine even though I’m on Tysabri.

im willing to be a guinea pig. The only thing that scares me are the neurological problems. I need that like a hole in the head.

[Kimba22]

I'm also on Ocrevus and asked my MS Specialist about this at my appointment earlier this month.

First, told me she did not think Ocrevus put patients at higher risk for severe illness from Covid-19. Said severe illness hasn't been reported with any of their patients on from the MS clinic. Mentioned study it may have protective properties (believe she was referring to same one mentioned here before ~ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7156942/)

She also said virus targets the T cell more than the B cell, and was more concerned about her patients on Tysabri or Fingolimod. Said patient who got the sickest was on Tecfidera. They fully recovered, as did all their other patients.

Would need to get vaccine a minimum of 8 weeks before infusion. If after infusion, wait three to four months. Said would still have an immune response to it, just how much is not known yet with this medication.

Due for infusion in a few weeks. Neuro said I could hold off, but not sure I how long I want to do that. Seems like it's taking a while just to complete phase 1A vaccinations!

[pb909]

I'm also on Ocrevus and asked my MS Specialist about this at my appointment earlier this month.

First, told me she did not think Ocrevus put patients at higher risk for severe illness from Covid-19. Said severe illness hasn't been reported with any of their patients on from the MS clinic. Mentioned study it may have protective properties (believe she was referring to same one mentioned here before ~ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7156942/)

She also said virus targets the T cell more than the B cell, and was more concerned about her patients on Tysabri or Fingolimod. Said patient who got the sickest was on Tecfidera. They fully recovered, as did all their other patients.

Would need to get vaccine a minimum of 8 weeks before infusion. If after infusion, wait three to four months. Said would still have an immune response to it, just how much is not known yet with this medication.

Due for infusion in a few weeks. Neuro said I could hold off, but not sure I how long I want to do that. Seems like it's taking a while just to complete phase 1A vaccinations!

Thanks for your update.

I'm on Ocrevus too and at my last appt on 8/17 I asked my Neuro similar questions, including:
- increased chance of getting covid-19? NO
- increased severity? NO

[pennstater]

I saw the CDC updated their guidance to indicate that people who are immune compromised, as well as people with auto immune disorders can get the vaccine. However, no safety profile exists.

Basically, talk to your doctor. Hoping the NMSS does publish the guidelines in January.

https://www.cdc.gov/coronavirus/2019...onditions.html

[Jules A]

Since it is a novel virus there are more questions than answers and unfortunately no long term data. Good news I guess is the smartest minds in the world have been at work on this for a while now.

[Mimi29kiddos]

I just spoke today with the Kaiser PharmD that manages my Truxima (rituximab) infusions with my neurologist. She advised me that I would be classified as "1c " for vaccination because of my immunocompromised state do to the infusions. She said six months after my last infusion (3/22/21), I will need to get labs to check my B cell levels. The body will respond best to the vaccine if it is given 7-10 months after the last infusion.

So, this means I have to suspend the future Truxima infusions until I am able to get the vaccination completed. I really think that I might want to go to another type of MS treatment. I do not like being in such an immunocompromised state.

I was told last fall that getting the rituximab infusion placed me at greater risk to need ICU care and a ventilator if I was to contract COVID-19.
This is not an easy decision by any means but I would like to get the vaccine. Looks like it will be next spring or early summer.

[polopuppy]

I am on Rituximab and will be getting my first Covid-19 vaccine tomorrow. I will be part of a study looking at the development of antibodies from the vaccine, in immune suppressed patients with autoimmune diseases. As a result of my immune suppression, I have lost my job of 34 years. My medical team did not want me providing front line care to patients. Initially, my employer allowed me to work as a clinical specialist away from the bedside but then denied me the accommodation after 4 months. They gave me the option of going back to bedside care, resigning or termination. I hired a lawyer but it hasn't helped so far. I am so stressed out over the situation and the manner that the hospital has treated me after so many years of dedicated service.

I understand that the vaccine may not protect me but the hope is that there may be a small immune response. It is interesting that many have indicated that their neurologists do not think that Ocrevus or Rituximab increase their Covid risks. My neurologist felt very strongly that being on Rituximab greatly increased my risks of contracting the disease, needing ICU care, requiring intubation and death. He sent me information on a Global Data Set presented at ECTRIMS in September. Here is the link to the study if others wish to read it or discuss it with their team. https://www.ajmc.com/view/ocrelizuma...iple-sclerosis

I will post and let you know how the vaccine goes and if antibodies are detected after the second vaccine. Stay safe everyone.

[pennstater]

polopuppy - a sincere thank you for being part of this study. I know my neuro has told people on the meds that deplete B cells, they are at a higher risk of catching covid, as well as more severe symptoms, but that it did not raise their death risk. He was using a study. I will have to find out which one. He was recommending the vaccine for the reasons above, acknowledging that they will not get the 94% protection, but ome protection is better than none. Lots of luck to you!
I am really sorry to hear about your job. Truly horrible they would not extend the accommodation. I can understand how you feel after years of employment. I hate to be such a pessimist, but in the end, they are businesses and driven by profit. Especially medium and large sized employers, where executives are removed from actual people who perform the daily operations. They make it hard for managers to make exceptions.

I hope something works out for you.

[SNOOPY]

Hi polopuppy

I haven't posted on this thread simply because I don't use a DMT, so I don't feel I have anything to offer.

I am on Rituximab and will be getting my first Covid-19 vaccine tomorrow. I will be part of a study looking at the development of antibodies from the vaccine, in immune suppressed patients with autoimmune diseases.

I did want to say thank you. Your experience may help so many others as well as yourself. I wish you a positive out come

[polopuppy]

Well, I had the vaccine following the required blood work. I had a mild reaction with flushing, itching and some hives They kept me under observation for an extra 30 minutes and then sent me home to take Benadryl.

I am actually due for Rituximab next week but my Neurologist has decided that he wants me to wait 6 weeks after the booster before getting my infusion. This makes me a little nervous because I just had had my first stable MRI in 40 months. I'm afraid the 2 month delay in Rituximab may cause a relapse but I will follow his recommendations since I trust his judgement. My MS has been aggressive and there has been new activity on every MRI over the two years I have been on Rituximab.

Thank you for your replies Penstater and Snoopy. I agree that even hospitals are big businesses and driven by profit. The thing that is so unfair is that half the employees are being protected by working remotely when they don't have any health conditions. I am an employee and patient of this hospital so I know that all my doctors are working from home, along with my PT, OT and speech pathologist. It makes no sense that they will not allow me further accommodation. They have made it very clear that they want me gone. What is done is done and now I need to focus on wellness and doing what is best for me.

I will try to update as I continue my way through the study, in case it helps inform others. All the best and Happy New Year to Everyone!

[swpanther1]

I am on Rituximab and will be getting my first Covid-19 vaccine tomorrow. I will be part of a study looking at the development of antibodies from the vaccine, in immune suppressed patients with autoimmune diseases. As a result of my immune suppression, I have lost my job of 34 years. My medical team did not want me providing front line care to patients. Initially, my employer allowed me to work as a clinical specialist away from the bedside but then denied me the accommodation after 4 months. They gave me the option of going back to bedside care, resigning or termination. I hired a lawyer but it hasn't helped so far. I am so stressed out over the situation and the manner that the hospital has treated me after so many years of dedicated service.

I understand that the vaccine may not protect me but the hope is that there may be a small immune response. It is interesting that many have indicated that their neurologists do not think that Ocrevus or Rituximab increase their Covid risks. My neurologist felt very strongly that being on Rituximab greatly increased my risks of contracting the disease, needing ICU care, requiring intubation and death. He sent me information on a Global Data Set presented at ECTRIMS in September. Here is the link to the study if others wish to read it or discuss it with their team. https://www.ajmc.com/view/ocrelizuma...iple-sclerosis

I will post and let you know how the vaccine goes and if antibodies are detected after the second vaccine. Stay safe everyone.

Prayers to you Polo; hope it goes well! Will look forward to updates. I am going to sign up for the shot (1C); been on Rebif for 15+ years...told my neuro I wanted to wait for a few months after people have received the shot and she said not a good idea to wait.

Happy New Year's Eve day tomorrow everyone. Stay safe.

Sara

[Live Fire]

I found good information from the Elliot Lewis Center. Here is the link:
https://elliotlewisms.com/coronavirus
It talks about all the different MS immune-suppressant medications and all the different COVID-19 vaccines.

[KoKo]

I found good information from the Elliot Lewis Center. Here is the link:
https://elliotlewisms.com/coronavirus
It talks about all the different MS immune-suppressant medications and all the different COVID-19 vaccines.

Thank you Live Fire, for sharing this info with us.

[MS TOO]

My HMO, Kaiser Permanente, recently provided some up to date information on this topic. I had already talked with my Neuro about taking the vaccine and he said he is encouraging most (but not all) of his patients to get the vaccine as soon as they can. I hope this helps answer some of your questions.

Multiple Sclerosis and COVID-19

Does multiple sclerosis make it more likely that I’ll get COVID-19?


Overall, people with MS have the same risk of developing COVID-19 as the general population. MS itself does not increase the risk of severe COVID-19.

Certain MS medications, such as interferon beta, may lower the risk of developing COVID-19. Other medications, such as anti-CD20 therapy, may make infection and serious disease more likely. If you are concerned about your treatments and COVID-19, please talk to your neurologist. Don’t stop medication without speaking to your doctor first.

In general, you may be more likely to develop severe COVID-19 symptoms if you:

• Live in a long-term care facility.
• Have an ongoing serious health condition. Examples include cancer, asthma, heart conditions, high blood pressure, severe obesity, diabetes, and chronic kidney, liver, or lung disease.
• Smoke or vape tobacco, nicotine, or marijuana.

Does my type of MS increase my risk of getting sick with COVID-19?


Some people with MS are more likely to develop severe COVID-19 and need hospital treatment. These are people:

• With progressive MS.
• With more severe disability from MS. This may include needing to use a walker or wheelchair.
• Over the age of 55.

Do MS medications increase my risk of getting sick from COVID-19?


Most disease modifying therapies for MS don't seem to increase the risk of developing COVID-19, based on current evidence. Early studies suggest that some MS medications may even lower the risk of developing COVID-19. These medications include:

• Glatiramer acetate (Glatopa, Copaxone)
• Interferons (Extavia, Avonex) may also reduce the need for hospitalization due to COVID-19.

Certain MS medications do appear to make COVID-19 infection, or serious disease, more likely. These include anti-CD20 therapies such as rituximab (Truxima, Rituxan) and ocrelizumab (Ocrevus). These medications may make people more likely to develop COVID-19. They may also increase the risk of more severe COVID-19. People on anti-CD20 therapies are more likely to require hospitalization, intensive care, or ventilation if they develop COVID-19. However, these therapies are not associated with an increased risk of death.

Our general recommendation is that people with MS should continue with their treatment. If you're concerned, please speak to your neurologist. Don't stop or change your medication without first speaking to your neurologist or MS team.
Will it be safe to get the COVID-19 vaccine?


A number of COVID-19 vaccine candidates are being evaluated for the prevention of COVID-19. Once a vaccine is approved by the Food and Drug Administration (FDA), we'll review the evidence and make a recommendation to our MS patients.

Most COVID-19 vaccine candidates are inactivated or mRNA vaccines. This means that they would be safe and effective for MS patients. However, we'd likely recommend against using a live vaccine.

The vaccine may not be fully effective for people taking anti-CD20 therapy for MS. Some people may need to discontinue therapy temporarily and wait to get the vaccine after the effects of the anti-CD20 therapy have worn off. Therapy can then be resumed once the vaccine (or series of vaccines) has been received. Your doctor will talk to you about the risks for you of discontinuing therapy and the benefits and properties of the vaccine that ultimately comes to market.

[KoKo]

Thank you for providing this info, MS TOO.