If so it would be interesting to know how it has affected them.
I am wondering if your doctor has put you on vitamin D as this has been found to help our body be able to fight off civid and other diseases. My doc just checked with me and I have been on D for many years as mine was severely low and now up too 24 or so which is better than severely low. Take care. meirish
Hi Irish, I'm not on extra vitamin D, however I do take a multivitamin every day, that has 10 mcgs vit D in it. I know I don't get much sun, so I should look into this. Thank you for the good advice. I hope you're doing OK.
I can't vouch if this is true, but on another forum a patient mentioned her rheumatologist claiming people with Sjogren's are less likely to get Covid-19 because their immune systems are already in overdrive. She said she hadn't heard of any (primary) Sjogren's patients with Covid..... Could this be true??!
Flues or colds haven't affected me since being diagnosed almost 20 years ago (despite having low Vit D levels - whenever I try to ramp it my eye dryness becomes worse).
There seem to be two profiles for Autoimmune disease; either you never catch anything, or you pick up a virus if someone sneezes in the next county!
I'm lucky(?) enough to be in the first but I'm not relying on that to protect me from any contagious diseases. I take appropriate precaution and always have; so avoidance, sanitization, and even masking aren't new or a problem for me.
I'm a strong believer in Vitamin D, and have never tested low for it but still take 2000IU daily during the summer, double in the winter. Probably because I'm north of the 49th parallel so worry about getting less sun exposure.
I haven?t had the flue or even a cold in many years. I too was extremely low in Vitamin D and have now brought it up with supplements. Hopefully it?s true that we can?t catch Covid!
I wouldn't let my guard down. Our immune systems can be tricky, either overactive or underachieve. I've heard people with lupus don't have good outcomes with Covid 19.
I take 3,000 IU of Vitamin D 3 every day. Mine was real low when they tested me a few years back. It might get up to 27, even with supplementation.
Hi, I have primary sjogrens and had COVID end of March. It is going on 8 months and I still have lingering symptoms from it. I developed tachycardia, chest pain and tightness, and tingling numbness in my left leg and foot. I never had serious respiratory issues, thankfully, just heaviness / tightness in chest. The leg pain started in lower back, turned into severe sciatica and then seemed to stay in my leg as tingling numbness which persists to this day. It also seems to have caused all my normal sjogrens symptoms to progress. It took about three months for my smell and taste to come back and it's still not 100%:(. I just started hydroxychloroquine a couple days ago so I'm hoping it helps. I'm worried about taking the hydroxychloroquine with the heart issues I've seemed to develope as it can effect your heart so I started with only taking 1 200 mg pill instead of 2 to see how it goes. I've had no help from doctors as they all seem to think COVID can't cause long term issues, they have all blown me off, but there is a community of 100's of thousands of COVID survivirs who have developed long term symptoms. You can find them on Facebook called survivor corps. Many of the long term symptoms mimic sjogrens and other autoimmune diseases including brain fog, fatigue, pots and neurological manifestations, and research suggests it may be triggering them. I hope you all stay safe xo
There has been a lot of discussion about heart issues from hydroxycholoquine and I have heard several cardiologists on TV shows say that they have never seen this type of side effect. I have been on the drug for close to 14 years and had not even heard of it being a problem. Neither my immunologist or cardiologist ever mentioned anything about heart issues. Take care. Hope all is getting better. meirish
I'm so sorry to hear you had this virus, Judes. The effects do seem to linger for months in some people, especially older or more vulnerable people. I'm glad you didn't have breathing issues, and that you didn't have to be admitted to hospital. Do you have any idea where you caught the virus?
I have primary Sjogren's and yes, I was dx'd with Covid earlier this month! (a family member brought home from work :-\)
I'm not so sure the tests for Covid are accurate - meaning, what if you have a cold and took the test, because you have nasal issues going on with the cold, you could be dx'd with Covid. As we know, many diseases have overlapping symptoms.
The first few days I had a slight sore throat and cough. The sore throat went away, the cough lingers on. In years past, I've had chest wall inflammation with Sjogren's - at times, when I take a deep breath, I can tell I have the inflammation, but I just take some Advil to help with that. Keeping fingers crossed that it doesn't develop into anything else.
I was disappointed that I was suppose to have a wellness doctor visit the week I got dx'd with Covid, so my appointment didn't happen. It's now rescheduled the middle of December. At that appointment they are suppose to check all my labs - thyroid numbers, Vitamin D, etc.
Bucky
Bucky, Sorry to hear that you are feeling bad. I also have trouble trusting the labs on the Covid. So many have false negatives or positive and such enormous testing is bought to make things get screwed up. We have so much information nowadays that keeping things straight regarding anything at all is more difficult than years gone by.
Take care girl. meirish
There is a big correlation between chronic or long term COVID and MCAS. (Mast Cell Activation Syndrome) .. evidently it can cause the MCAS, just like Lyme disease can.
https://www.wsj.com/articles/doctors-begin-to-crack-covids-mysterious-long-term-effects-11604252961?mod=e2fb&fbclid=IwAR2dp7ezCSNr8jFNkirpq602lF2usRdyV3Wb6BsitaarDacTY_TNTukAEUg
Jazzlover - unfortunately, the link you posted for the article only lets you read a few paragraphs and then requires you to subscribe to read the entire story. I hate when articles do that!
Bucky
I was not diagnosed but my spouse and I had many COVID symptoms in March, we became very ill quite quickly though without the fever or cough. We continue to wonder whether it was SJS but there is no way to know. I was tested prior to a procedure and was negative and hope to stay that way.
try this one, Bucky
COVID-19 and Multisystem Inflammatory Syndrome, or is it Mast Cell Activation Syndrome?
https://pubmed.ncbi.nlm.nih.gov/33023287/
Am waiting to see if my Covid test on Saturday is positive. Have CVID, SS and one lung. Am now having several symptoms including: high bp/Tacycardia, temp, migraine like headache, chest pressure, fatigue and am coughing up blood.
I had missed two of my weekly IVIG infusions because of taking my mom with Alzheimer's, to ER. This started out like one of my typical sinus infections..but I have symptoms I don't normally have. I called my Immunologist who insisted I go get a Covid test. I literally called 3 different urgent care facilities, only to be told..we're booked, call back next week. I ended up having to go to the hospital ER just for the test. And yes..that dang Q-tip had to have come close to my brain!
Anyway...waiting ..
SjoDry
I think I mentioned this before, but I believe that the lingering effects are not to be pooh-poohed. The problem is that the experts ( there are a few I think) mentioned that the civid is very much like an autoimmune disease because of all the inflammatory issues that occur.
This really leads me to believe that inflammatory issues with autoimmune diseases cause a lot of longer term effects that sound similar to what the covid patients with long term effects are complaining about.
My DIL is a nurse working with civid with the elderly population. She works in a place where the infection control is very, very good with all the gowns, etc and testing every day or every other day for many or much of the staff. She said that her first symptoms were popping ears and she thought she was getting a cold. She eventually had the cold symptoms and a lot of nausea plus the terrible fatigue.
I haven't asked her a lot about her treatment because she hasn't felt that much like talking on the phone. When she feels better I will ask her more. She is improving and the few times I talked to her she sounds much better. Her daughter is a senior at college and had it also. This granddaughter works as a RA and works with several floors of students and she has dealt with students who are in quarantine but avoids any close contact.
The college has had a lot of kids in quarantine over the past few months so having the Christmas break will be a good thing. Maybe slow it down. Grandaughter had slight cold symptoms for 2 days and had a lot of fatigue the first few days and recovered quickly. Youth can be a good thing!! I think in the college environment it is very hard to stop the virus as the air is probably full of the virus. Their classes have been all online the past couple of months also but just living in dorms can make it hard to deal with. meirish
I'm so sorry to hear this, SjoDry!
I take Vit D and zinc to help prevent it, but if I get it I will add melatonin and ivermectin. The ivermectin is being used by many, but it does require a prescription.
Go to You Tube if you would like to know more.
Your symptoms sound very much like what my best friend went through when she had it back in March. I pray that you will do OK.
So sorry to hear what some members have been going through, and I hope Sjodry that you don't have the Covid virus, though it does sound very like it.
As other have said, there is a striking similarity between autoimmune symptoms and Covid symptoms. When I hear people's descriptions of the longer term effects of their Covid infection - exhaustion, dizziness, general debility, etc. - it all sounds very familiar, especially of my first year of Sjogrens symptoms.
sjodry, Still waiting on you to let us know about your civid test. Hope that you are getting the appropriate treatment for whatever your diagnosis is. So hard to be sick around the holidays as so many clinics and urgent cares are closed.
We have a respiratory center that was opened this fall and handles the covid issues. If someone calls their specialist for an appt the questions are asked and if the answers are suspicious they run people through the civid center before letting them into the clinic.
Also, when we go to then clinic for anything we are stopped and questioned by nurses before they let us in for our scheduled appointments or blood work. I am there so many times a week lately they should know me but I don't think they do cause of the mask.I know that our respiratory/covid center is closed until Sat so anything and everything needs to go through the ER at the hospital. Their ER is going to be very busy I think.
Also, my DIL with the Covid who has been home since 12 days ago started to have shortness of breath this Monday and went to the respiratory clinic at her clinic which is not the same as mine. She had been on Amoxicillin since she had the positive civid test and she was seen my respiratory at her clinic and had all the scans and blood work to check things out. She had the beginnings of pneumonia and was put on a rescue inhaler plus prednisone orally for 10 days or so.
She asked about getting the blood plasma product IV (forgot the name darn...help!) and she was told that the staff have to fill out special forms on people requesting this and only those meeting certain qualifications can get this blood product. This is because there is such a shortage of this product. The president and many others who are older and essential workers have gotten this. She is a nurse and has to go back to work on Christmas day so she was thinking ahead I guess. She is much stronger and sounds and looks good....saw her in her car one day..I stay away from most people these past months. Time will tell if she is strong enough to take the 12 hour days.
By the way, if any of you know people who have had covid and are willing to donate blood plasma for this purpose please let them know they can call a Biolife lab in their area. They have a website and you can find the name of a lab near you. MY granddaughter has had Covid at college and she plans to donate plasma. You get paid 80$ a draw I think she said and it can be done 2 times a week I believe. That is something that is a very worthwhile thing and doesn't make you weak as it doesn't take iron out of your blood.
Have a good Christmas week folks. Snowstorms in the country I hear. Minnesota had theirs yesterday. meirish
QuoteI, knock on wood,have not had Covid. And have not had a cold, crossing myself now, for many months...perhaps close to a year. No doubt it?s mostly due to more hand washing, less going out and the mask. I?ve had some very bad colds in years past. I?m also taking more vitamin D. Usually , I get one or two colds a year. Ironically, on 12/31 last year , I had what i sort of joke to be Covid?s cousin with a crazy high and relentless fever, horrible fatigue and a very bad cough that my doctor thought could be the start of pneumonia and sent me for an Ex ray. I still wonder about that cold.
Anyway...years ago I had some appointments with a functional medicine doctor. Due to my family history of cancer, she suggested I keep my vitamin d levels high normal.
So lately I?ve been doing that. I still take my 5000 in the morning, but have added another 2500 at bedtime. Helps to fight colds, the virus and cancer. Sounds good to me. I get checked once a year to make sure I don?t go above high-normal.
I just saw an article on FB that these supplements might help fight Covid 19:
D3
Quercitin
Zinc
Vitamin c
I need to look into zinc. A small dosage or perhaps liquid. I?m taking all the others.
I know this can be extraordinarily serious and even fatal. We know one person who has died from it. But , especially lately, the great majority of folks we know who have gotten it have had mild cases. Thank goodness.
Well...the first test was negative..yet I still am having several symptoms. These symptoms are not like my typical infections. I was told that the timing of the Covid test can also be a factor..if the test is taken too early in the course of the infection, one can get a false negative. I am having another test tomorrow at 12:40.
I saw my Immunologist yesterday and he is concerned that my spleen is enlarged. He told me that I should be in the next group for the Covid vaccine as a high risk person. He ordered bloodwork and two cat scans. Also, told me that (at this time), the Moderna vaccine is the vaccine less likely to cause an allergic reaction. He said there is a foamy binding agent that was used which sensitive folks can react to. He said they will improve in time. He told me that some of his CVID patients have gotten Covid and been mild, while another CVID lady is very sick in the hospital.
So not sure what is happening with my body right now. Will let you know when I get some definite answers.
Take care.
SjoDry
Waiting and hoping that you will find out soon what your body is up to. Will keep you in my thoughts and prayers. meirish