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Old 07-11-2021, 10:05 AM #1
Bearygood Bearygood is offline
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Default COVID Vaccine - Not on Medication

Hi, all. It's been a looong time since I've been here. I hope everyone is doing well, relatively speaking.

My question goes out to those who have Multiple Sclerosis but do not take any type of DMD. I went to an online consortium fairly early on and while the MS doctors recommended the mRNA vaccine for those on medication, they were honest enough to admit that there was no data for those who are not. Obviously, my concern is that my already-overactive immune system will get revved up.

I would love to hear from anyone in a similar position who has gotten the vaccine, or any thoughts on this in general. I waited a while to make an appointment for the vaccine, hoping that there would be more data on people with my profile but there still doesn't seem to be any.... I do have an appointment but am admittedly nervous!
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Old 07-11-2021, 10:20 AM #2
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Hi, Bearygood,

I've been keeping an eye on the experts' recommendations about MS and the vaccine, and they're recommending that everyone with MS get the vaccine, regardless of the status of your MS or what drugs you're taking.

Those on certain types of MS drugs are advised to time the vaccine dosing so that the vaccine won't interact with that type of drug. That's the only precaution I've seen about the vaccine and MS.

The B-cell depleting drugs (like Ocrevus) are the ones where there needs to be special timing for the vaccine:

https://multiplesclerosisnewstoday.c...ovid-19-study/
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Old 07-11-2021, 11:11 AM #3
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Hi, Agate. Thanks for your reply.

Unless I missed it, I don't see anything in the study that speaks to those whose immune systems are not being suppressed at all. To clarify, I am not on any MS medication at all and the doctors who said "we don't know" are all very highly regarded MS specialists. This was about five months ago so I have been looking for information since that time. It seems like the best information is anecdotal....so far I only know one person with a similar profile who had the vaccine. She did not fare well but granted, she is much more symptomatic than I am so it is difficult to assess cause and effect just by her experience alone.
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Old 07-11-2021, 11:26 AM #4
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The doctors don't know but then they don't know much about COVID-19 at all because it's new to them. All of us, including the doctors and research scientists, are just groping around and doing the best we can.

Maybe you aren't aware of the National MS Society guidelines for COVID-19 vaccination for people with MS (updated June 2, 2021):

COVID-19 Vaccine Guidance for People Living with MS | National MS Society | National Multiple Sclerosis Society

Especially this part:

Quote:
The risks of COVID-19 outweigh any potential risks from the vaccine. In addition, members of the same household and close contacts should also be vaccinated against COVID-19 when available to decrease the impact of the virus.

People with progressive MS, those who are older, those who have a higher level of physical disability, those with certain medical conditions (e.g., diabetes, high blood pressure, obesity, heart and lung disease, pregnancy), and Black and Hispanic populations are among groups with the highest risk for hospitalization due to COVID-19. Individuals in these high-risk groups are especially encouraged to get vaccinated.

The mRNA COVID-19 vaccines (Pfizer BioNTech and Moderna) require two doses and you need to get both doses to be maximally protected. The vector vaccine (J&J) requires a single dose. Whether you receive the Pfizer BioNTech, Moderna or J&J vaccine, it takes two weeks after being fully vaccinated before you are considered protected.
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Repeal the law of gravity!

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Avonex 2002-2005. Copaxone 6/4/07-5/15/10. Currently: glatiramer acetate (generic Copaxone), 40mg 3 times/week, since 12/16/20
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Old 07-11-2021, 11:54 AM #5
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I have been following COVID developments quite closely for over a year. For the record, someone I cared about deeply passed away from COVID at the beginning of April last year. He was one of the first 4,000 deaths. Unfortunately, he is not the only person I know who died: I also know others who got very sick but thankfully pulled through.

I am not looking for an explanation of why things are known and others remain a mystery. I understand all of that and am well aware of the stock recommendations, as well as the concept of risk vs. benefits. I am merely asking for others in the same boat, if any, to share their experience -- or in the event I missed it, a published opinion about this scenario.

Thank you
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Old 07-11-2021, 12:08 PM #6
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I'm sorry. I didn't realize that you already knew everything I tried to state. One never knows a person's "information level" when someone comes here and posts.

You were here long ago but I'm sorry I can't recall much about you. I wasn't very active here until recently. Since Sally passed away and others drifted off, this MS board seemed to need a few people posting, and I decided to be one of them.

I try not to butt in where my input isn't welcome. Again, my apologies.

I got the COVID-19 vaccine but had been taking generic Copaxone for 6 months, after 10 years on no MS drugs. I went back onto Copaxone partly because there was some evidence that it might offer protection against COVID. I was aware that nobody knew for sure, but the vaccines had been around a while by the time I got mine, and so I felt a little easier about getting it when I did (a week ago).

I hope you will find others in the same boat as yourself. Not many people stop by here nowadays, and I took the liberty of replying.
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Old 07-11-2021, 02:16 PM #7
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No problem, I know you are just trying to be helpful. This has been a hard decision. I doubt anything will make me cancel my appointment but I would appreciate hearing from others in the same boat.

I'm sorry to hear about Sally, I remember she was an avid poster and a valued member of this community. I am also sorry to hear that postings have dropped off -- out of all the message boards I visited when I was searching for answers about multiple sclerosis, this was the best by far. I communicated with a few people off-board but eventually lost touch.

As for myself, I was dxed about 13 years ago from a case of optic neuritis. My MRI more than met the criteria so I didn't even have to get a spinal tap, yet I was not very symptomatic. According to an MRI from about two years back, I had a silent case of ON but other than that, my sx are sensory and thankfully, not pronounced enough to drastically interfere with everyday life. There were several factors that impacted my decision to go the no medication route and of course, I was diagnosed before oral therapies were available. The "new drug" at the time was Tysabri.
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Old 07-15-2021, 08:13 PM #8
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Well, it has been a long time Bearygood, good to "see" you

Quote:
My question goes out to those who have Multiple Sclerosis but do not take any type of DMD.
That would be me I have never used a DMD.

I have received the two doses of Pfizer. I never noticed any issues with MS after receiving either dose. I had mild injection reactions (sore arm and about 2 weeks after the injection I had a swollen lymph node in my neck that went away within 24 hours).

I have never, to date, had a problem with vaccines affecting the MS. I get a yearly flu vaccines and just recently had the Shingles vaccine.

Personally, just based on what I have read I would stay away from the J&J vaccine. That is the one that scares me when having MS.

Take care
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Old 07-22-2021, 04:47 PM #9
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SNOOPY!!!!! So happy to "see" you as well and I'm glad you are DOING well!

So glad you saw this and responded. I got the first shot yesterday (Pfizer) and it's exactly as you described, sore arm, but that's it. I have actually never gotten a vaccine before (at least as an adult) so I am sure that contributed to my hesitation. I expect I'll be a little nervous before the second shot but hopefully I will fare as well as you!

Interesting about your lymph gland...one of mine is still slightly enlarged from a bout with mono in my early twenties, it actually flares up a bit when I'm ill. The suspected link between Epstein Barr and MS always resonated with me but like everything else with MS, who knows for sure?

As I stated earlier, I'm sorry this place has become so dormant. This was the place that helped me the most, especially people like you, who don't take DMDs. I guess by now I am about thirteen years in and quite honestly, I don't think I could have done better following a different course.

Thank you, thank you, thank you!
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Old 07-25-2021, 08:36 AM #10
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Glad to hear you did get the covid vaccine (Pfizer) and had minimal problems

I certainly understand being anxious about the second vaccine, I was. All I had heard was the second vaccine was where people had the most issues with side effects.

It was with the second vaccine that I had the lymph node swell. Other than that my arm was a little bit more sore with the second vaccine than the first but that was it. Be aware of the possible side effects listed for Pfizer so you won't freak out if you feel different with the second vaccine. The swollen lymph node surprised me and I needed to go back and read my Pfizer paper which did list this side effect.

Glad to hear you are doing so well Message boards (forums), in a general sense are quite slow anymore. I believe people have found other ways of communicating with those with the same health concerns. Losing Sally was quite sad The MS Forum had been fairly quiet before her loss

Please visit and post on the MS Forum if so inclined. I, and others are still around just not as frequent. In my case I check every so often to see if I can be of help to anyone. Glad my response was helpful for you Bearygood
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