MCTD - Covid vaccines: Hi, Can i get some advice... - LUPUS UK

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MCTD - Covid vaccines

showmustgoon84 profile image
15 Replies

Hi,

Can i get some advice or helpful links where i can read about researchs /experiences of people with diagnosis MCTD (mixed connective tissue disease ) and Covid vaccines, my sister has it , she is 31 year old, and she is is not vaccinated yet . Thank you in advance !

15 Replies
Tanitani profile image
Tanitani

I dont think you will find such research as MCTD is very rare. You can look for rheumatogical diseases in general. I have MCTD and had 3 Moderna vaccines. After the first two I didnt have any side effects and developed a lot of antibodies against covid. The 3rd one I took recently as here in the US immunosuppressed people are advised to take an additional vaccine. With 3rd one I had side effects for a day and a half (felt like I have flu, and then suddenly the symptoms disappeared). I'm assuming I already had a lot of immunity so 3rd one was maybe not necessary, but now I'm sure I'm well protected from covid.

showmustgoon84 profile image
showmustgoon84 in reply to Tanitani

Thank you so much for your response !! I am glad everything worked out fine and you got positive immunity response! It is very rare indeed , i found few articles only but not specialized for MCTD specifically., and one research showing positive effects of H1N1 vaccine. I was more concerned on long term how her organism will accept it as it is already confused enough with all mctd symptoms . Have great day , than you for the response , i really appreciate it!!

Ellieb123 profile image
Ellieb123

Hi, I’ve MCTD and I’ve had my 2 PFizer vaccines. I had some feeling of flu like symptoms for a day after each injection but no other reaction.

showmustgoon84 profile image
showmustgoon84 in reply to Ellieb123

Thank you so much for sharing this with me, you made me more calm with my concerns. It is such a rare disease and very difficult to get extra information online . Thanks a lot

Feester12 profile image
Feester12

I have MCTD and am on immune suppressants, I had the Astra Zeneca first dose and had a bad reaction, awful migraine and being sick so I haven’t had the second dose as I also have APS (sticky blood) and with the Astra being linked to blood clots I’ve decided to wait for more research. Was good to read Ellie B’s post and no reaction to the Pfizer. I don’t think there’s been enough research into people with auto immune conditions and the vaccine, just being told to have it as more dangerous to get Covid but quite a lot of people have had a flare of their condition after having it and I definitely don’t want that either.

showmustgoon84 profile image
showmustgoon84 in reply to Feester12

Hi,

Thank you so much for sharing your experience , well Astra seems to have very strong reaction in general according to what i have heard from my friends( without any health issue) . I totally agree whit you as yes people were just told to do it without actually having some serious research to relay on. Especially with immune conditions. It's good to hear though that there are positive experiences too as Ellie b post!Have a great day and thank you once again

soul22 profile image
soul22

Hi I've no links

But clinically I read no reason not to have it with mctd.

I have mctd my dr advised be dangerous not to have it as getting covic is far higher danger to me with mctd than having vaccine.

Only thing checked was if history blood clots to chose psfizer rather than astra zenecca.

I had psfizer both times

Hope helps

showmustgoon84 profile image
showmustgoon84 in reply to soul22

Hi thank you for your response, my sister is living in Serbia and they have all type of vaccines she was adviced to take Chinese ( Sinofarm ) or Pfizer vaccine. You helped a lot with your answer , thanks 🙏

soul22 profile image
soul22 in reply to showmustgoon84

Your most welcome, I did speak to Dr.Great stuff

Always good to check.

Hi there. I have Overlap CTD which my rheumi says is closest to MCTD but equally rare. I’ve had both AZ vaccines - no side effects other than sore arm. Not heard anything yet about a booster for immunesuppresssed people here in Scotland. In general I think quite a few people, me included are mainly concerned that we may not have mounted enough of a response to both vaccines to give us much protection. But I guess something’s better than none.

showmustgoon84 profile image
showmustgoon84 in reply to

thank you so much for sharing your experience, i red some research from a Israel with immunosuppressed patients and was showing what you said that not enough protection is given after vaccination, but it was more general not related to specific autoimmune condition.

in reply to showmustgoon84

I think that is because it’s the medication that counts rather than the underlying autoimmune disease.

MCTD is pretty rare but then so are 2 out of the 3 overlap connective diseases associated with it. So it is not of itself more a risk factor than Lupus, systemic sclerosis or polymyositis. Not to others such as Vasculitis, Sjögren’s or RA.

In terms of vulnerability to severe Covid each person’s immune system is unique and unpredictable. So if it wasn’t for the treatments (which are same ones used pretty much in all CTDs), your sister’s overactive immune system might actually protect her from the worst of Covid better than your normal immune system (assuming yours is normal) would.

But due to immunesuppression her immune system should be dampened enough to mean that by modifying the underlying MCTD - she can’t mount a good enough immune response to the vaccines.

Not nearly enough is known yet - but if you want to get as much idea as possible then you’d be better off focusing on the medication she takes rather than the specific disease she suffers from. Hope this makes sense.

Hi! I have MCTD as well as primary APS. My medications include warfarin for the APS (Sticky Blood and I have history of clots in both lungs with subsequent pulmonary embolisms. I just finished my 2nd Pfizer shot Sept 10 am I'm scheduled to get in my 3rd in 28 days (all received through a VA hospital in the USA.) **When I saw the rheumatologist at the VA (who by the way is lazy and useless) he said he couldn't diagnose lupus SLE so he diagnosed MCTD. 🙄 Which, until recently, my attitude was (incorrectly) MCTD was a "throw away diagnosis". As my symptoms have gotten worse, I now realize MCTD is a worrisome auto immune disease. Getting back to your concerns, you can google "scholarly articles for MCTD" (or any disease). This site has many research articles that might answer your questions. I too was hesitant! However I am convinced getting covid or one of the emerging covid variants would be devastating. I did read to avoid J&J if you're on blood thinners. Good luck finding article's that will help with your sister's decision. -sharon 🪶

Roarah profile image
Roarah

My rhuemy, neurologist, cardiologist and hematologist all conferred last December that the risk of vaccine was far less dangerous than the risk of covid to all people especially those with autoimmune diseases. If she is afraid of vaccine side effects just imagine how dangerous covid is to someone on immune suppressants and organ damage. Lupus patients are dying at far greater numbers than healthy people when infected by covid. Tell her to listen to her doctor they have read all the research and understand the results and all professionals are in agreement the many benefits of full vaccination merit the very low risks!

Krock1 profile image
Krock1

One of my sons is an ER physician and deals with COVID on a daily basis. 90% of the COVID hospitalizations are patients who have not been vaccinated. This disease is far worse than any side effects, short or long term, that I may encounter from being vaccinated.

I have had MCTD for 5 years and take a maintenance dose of Hydroxychloroquine to control symptoms. I will be getting my third dose in October and do not have any problem getting it. I realize it is a new vaccine and it would be nice to have more studies done on it. Given that MCTD is rare, it is unlikely that we will be treated as a research subject for its effects on our population. Could it cause problems with auto immune symptoms? Sure, but weighing the possibility of it causing more auto immune symptoms against the deadly symptoms of COVID is enough for me to make the choice to get protected against the known threat.

You should seek medical advice on this situation, and I am only stating what my situation is and the advice that has been given to me by my physicians. The physicians are working with the best model for how to treat this situation.

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