Author Topic: Vaccine thoughts as I cannot take the normal type drugs given for sjogrens  (Read 706 times)

Confused

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I know there is a major new twist on the Covid coming and it is fast and the worst one yet.
So far I have basically mainly stayed home.
I cannot take steroids, methotrexate, plaquenil and a host of other meds. 
Pharmacist was concerned and said he had had other autoimmune patients take it and do ok but never someone like me.  He said there is not enough information on autoimmune patients and the vaccines.

I metabolize insanely if at all.  Can not take an extended release anything as it will be gone within about 3 hours.  If the med has, who knows what in it, I won't be able to use it at all.
Have found a few meds I can take but only made by certain companies.

Anyone out there like me?  Do not know whether to chance the vaccine or not.  The pneumonia vaccine took me 6 months to recover from.  Won't do that one again. 

Help!!!!!   
« Last Edit: June 22, 2021, 04:35:18 PM by Confused »

jazzlover

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I still refuse to take any of the V's .. no way. Do your research BIG TIME.

Go to Rumble or BitChute for info, not You Tube, where the truth has been censored.

I plan to take ivermectin if I get sick.

I already take curcumin and Vit D, which have been shown to help. Curcumin helps because it's an anti-inflammatory. Even antihistamines and Pepcid are being given to Covid patients.

I consider the V to be a bio-weapon.
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

Kathy57

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Dear confused,

Millions of people have taken the vaccines and have done very well.  Just today on the news they talked about a place of work where there were about six government employees working in IT.  I believe 5 people got the disease with three hospitalized and one dead😞. The only one who didn?t get sick was the only one vaccinated.

I would trust the science.  I took Johnson and johnson vaccine which was only one shot.  I got a sore arm and felt a little fatigued but hard to tell if the fatigue was just my normal.

My husband is on powerful immunologic chemo meds because he has stage 4 cancer and is going through a phase 2 trial.  He took the Pfizer and just had a sore arm the first time and some fatigue and sore arm after the last dose.  It lasted less than 24 hours.

This latest variant sounds very scary and I can?t begin to tell you the peace of mind my husband and I have now that we are both vaccinated. 

Good luck with your decision.

Kathy

62 yr old female - Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer, Osteoporosis.

Confused

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What about the blood clots in J and J?
 

« Last Edit: June 22, 2021, 01:40:42 PM by Confused »

Confused

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Sorry I tried to beat a pain attack to write but lost.  Thanks Kathy  Forgive me for being so short.

meirish

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I would bet that you have a problem metabolizing certain medications. If  you see GI doc or do a search and ask around you should be able to find some doc who will do testing on enzymes made by the liver. There are a couple enzymes that I have heard about that cause the very fast metabolism of certain drugs.

My neighbor in the country who is now deceased  also had sjogrens and a couple of other autoimmune diseases. She had a heck of a time when she had surgery as she metabolized the pain medications so fast that they did not help. She had testing for the presence of these enzymes. It is miserable when this type of problem does exist. Hope you can find some drugs that do help you when you need them. good luck meirish

Linda196

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Kathy57

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Dear confused,

No need to apologize cause you are just fine🙌.  I didn?t have any issues with blood clots after J and J and I don?t know anyone personally who did.  I did read about a possible issue with this. 

It?s probably a good thing to talk to a trusted doctor about this and all of your concerns.  I do wish you the very best and stay healthy and safe😉.

Kathy
62 yr old female - Diagnosed Sjogrens Aug. 1st 2014.  Plaqinil, Evoxac, Prevacid, Lexapro, Hypothyroid, Esophagel Reflux, Gastritis, Barretts Esophagus, failed sinus surgery with 3 nasal septal perforations.  (Can't see it from the outside)  Asthma, albuterol, Dulera, Nebulizer, Osteoporosis.

eye2dry

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I am not getting any of the vaccines, I have no heart or lung conditions, no hypertension, not diabetic, so on..... It has a 98.8% cure rate. I did not hide for a year in my house nor did I wear a mask.

My feeling is if your worried about Covid, wear your mask(s), stay home, take the vaccine

Some family members took the vaccine. Most have not.

Think it out carefully......read up on it....there's scientist, Drs and nurses, pharmacologist who advise for it and against it. There have been adverse reactions, even deaths from it.

I am on Plaquenil 300 mg daily....so I think that had helped me avoid getting " the Covid ". Due to hospital stays and surgery my husband has been tested 3 times for the virus and was always negative.  I do not know anyone personally that had Covid.

Good luck with whatever you choose.

Shelly
medications: synthroid- Cymbalta- plaquenil- lots of supplements

***Lord help me to be the person my dog thinks I am***

meirish

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I did lots and lots of research prior to taking the Johnson v shoppingaccine and I wore a mask all the time and I am still the only one in my 22 apartment complex that wears a mask yet to go out and when I am out with the others in the community room. I do take it off when outside and not in large close groups. My T cells were extremely low when I was diagnosed with Myasthenia and Hashimotos and the last time it was checked a few years ago it was up in the 800's but not up in the normal range.My immunologist didn't feel compelled to check it all that often after a few years because it had gone up.

Also, I am also on the IVIG for my Myasthenia and the IVIG is also the treatment for low immune system so he was happy it  worked out that way. Also, I was sick a lot and had a lot of infections for years but doc said he thought the small amount of T-cells I had worked like little troupers because I didn't get as sick as he thought I would or should.

So, I have my vaccine, wear my mask and just don't get too crazy about going in large crowds. I have read all the bad stuff and the good stuff about the covid and I prefer to read the statistics about the area I live in. The state of MN has places on line and in the newspapers that gives the daily, weekly and monthly stats for the covid in all the counties in the state. This seems like a good way to see what the trend is.

It also makes a difference what the economy is like as the bigger the population and number of corporate business there are the more out of state and out of country travel is going on. Also depends on the type of leisure activity that is going on in ones own community plus the age of the population where you live. Also being close to a really big airport might affect some areas. If  you go on line and key in your town you will find the stats on the ages of your community. I have 2 relatives who have had covid and one is a nurse who has kept away from me but at the same time when she has been around me much of the time lately she still wears her mask in spite of having had the vaccine also.

People can think I am crazy but I do feel fairly safe except for the variant covid that is going to be around. I don't believe everything I read and will just watch the stats and see what is coming to my state. I am moving north to a more highly populated area and this area isn't as apt to wear masks as the people in the community where I live now. But, it is amazing that the stats on my new community are not all that high. Soooo, what is the answer. Educate yourself and don't believe everything you hear or read as people love to get carried away with "news".

I do know that all my doctors have told me to keep wearing my mask so I guess I take some of that to heart also. Only makes sense with my history. Then add the 5 autoimmune diseases. Also, I can't take methotrexate, cellcept or imuran as I get more infections when I am on those meds. I am also allergic to many other medications and have to watch the meds I do take and pay attention. Start at a low dose, etc and ramp up slowly. I had the typical side effects after the Johnson vaccine but only took that when I felt deep in my soul that it was what I was supposed to do. Don't take anything unless you want to is the whole idea. Good luck to all. meirish

Confused

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Irish,
I think you are very smart to wear the mask.  My hubby and I wear one and are amazed at how people assume all is well and and nothing like having a few colleges in the area.  After all those that are young often think they are invincible !
My understanding of the virus is that you can be contagious a number of days before you even realize you have it and some people cannot take the vaccine.  My massage gal said her client had a shot and 4 days later she was so sick and has been told she can not ever take any vaccine for this virus!  It does not matter which vaccine for her. That is the first time I had heard of that so what would all vaccines have in them that would make this lady not able to take at least one.  I have heard that certain vaccines do not seem to work on certain virus's for some people.  They can take another vaccine and it will cover the virus that the first vaccine wouldn't.

I think it is better for me to wait and see how all this turns out.  My pharmacist said there have not been enough of those with autoimmune diseases to really know the outcome and I suspect with me having other strange things going on made the difference.  We also live in an area where there is a lot of travelers being as how the airline traffic is pretty high.  also since it took me 6 months to recover from the pneumonia shot I think my system is pretty whacky.

As one doctor told me I knew my body best so if something is going to be a problem than I should follow what I knew.  That was  not on the virus.  Thank you so much for sharing.  It really is rough when you have people act like they know what I should do and then refuse to hear what I have to say.

If I was young maybe I would feel decent some of the time.  Those days are gone.

Thanks Irish!

jazzlover

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Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

Scottietottie

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Hi  :)

I have a friend who I first met in the 80s.  She contracted Covid back before there were tests before our first lockdown. She very nearly died. She is still ill and a year and a half on it's beginning to dawn on her that she is never going to  get better. Her lungs are scarred and from being a vibrant positive person she is now pretty disabled, breathless and finding life hard.
  :)
I have been dxd with long Covid. I must have contracted it back when my friend did but I had a very mild case of it. However - it has caught up with me. My oxygen levels are not normal and the faitigue is fatigue on top of the SjS/Lupus fatigue.

My family have all had their vaccines now. I've had mine too. some of us had Pfizer and some of us had AstraZenica  I don't want any of them ever to contract Covid. It's way worse than flu.

Take care - Scottie
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meirish

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Scottie, I am so sorry to hear that. You are such a tough gal all these years that it is hard to picture you feeling so badly. I hope that you will improve in spite of the long covid diagnosis and feel better as time goes on. Hopefully they will discover some drugs that will help people with long covid be able to function better. Thank you for sharing this with us and stay safe. Hugs meirish

Confused

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Scottie,
I am so very sorry for what you and your friend have been through.  I had no idea that there was a long Covid.
I do know the UK seems to be particularly hit hard with the Covid.  It seems as how you get rid of one only to have another one right behind it.
I took the Pfzer Vaccine  last week on Monday.  I had been getting hit with lots of you should take this-----except from my one doc who said be careful.  What the heck does that mean?  The pharmacist said that the trouble with the Vaccines is that there have not been enough people with auto immune diseases that have taken the vaccines to know what the out come would be.
For me it was not good.  I am somewhat coherent by today but have been majorly sick.  I don't know what I am going to do about shot #2.  The first shot is supposed to be the one that causes no problems.  I have one doctor who wants me to either not take it or go to the hospital and I have not yet figured out what that would really do for me.  I am not spending over a week in the hospital.  I know this puts me at risk of the delta deviant plus I don't have the second shot.  I was hit with the added fatigue plus major pain.  I didn't know I could hurt in so many places.  I am going to pray that the lowered ox levels come back on their own for you and that you are granted peace an no pain.
Take care Scottie,  you were the first to write me on the board with some really helpful information since I had just be dxed with the sjogre's and could not get any information out of doctors here!