Author Topic: Immune compromised?  (Read 447 times)

Liz D.

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Immune compromised?
« on: March 09, 2020, 06:41:29 AM »
Are we considered immune compromised or not?  Some places I go to have said not to attend if I’m immune compromised.  I’m not sure if being autoimmune is in that definition.  I’m on Plaquenil but not prednisone or anything that suppresses the immune system.

I feel like some doctors would say I am and others would say I’m not.  What are your thoughts? Thanks.

Liz D.
56 year old female
Sjogrens Syndrome (diagnosed 2004), Hypothryoidism, Asthma, Osteoporosis
Meds:  Plaquenil 400 mg; Synthroid 100mcg; Evoxac, Flovent, Flonase, Protonix 40 mg.,  Prozac 40 mg. Naproxen 500 mg., Hormone Replacement Therapy, vitamins, calcium, flaxseed, biotin

Maria3667

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Re: Immune compromised?
« Reply #1 on: March 09, 2020, 10:09:50 AM »
Hi Liz,

Generally speaking, Sjogren's patients are known to have an overactive immune system that attacks our own tissues. Hence some of us do well on immunosuppressants like Embrel or Methotrexate.

But of course it could depend on comorbidity. For example if your health is compromised by infections or such...

That being said, since I have Sjogren's the flu & colds almost always pass me by, but I religiously take a daily dose of 3.000 mg Vitamine C.

« Last Edit: March 10, 2020, 04:18:37 PM by Maria3667 »
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Linda196

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Re: Immune compromised?
« Reply #2 on: March 10, 2020, 02:41:13 AM »
My personal evaluation is that compromise does not mean diminished, it means affected in some way that alters it's effectiveness.

For that reason, I would consider autoimmune as immune compromised, because although some of us wouldn't catch bug it it was thrown at us, while others pick it up is someone sneezes two towns away, our immune system still isn't functioning properly.

In some cases I'm sure that our "overactive "immune system is really "misdirected" so, while it's busy attacking our own tissue, it may be leaving us open to attack from external pathogens. Lab testing in cases like this often show an Immune Deficiency disorder along side the autoimmune disease, so it is possible. Without knowing the exact nature of the pathogenisis of our personal brand of autoimmune, we can't be sure.

There is also the possibility that, even though we don't show signs of an infective process because our defenses are on high alert and preventing it, we are still carriers of that infective process, and as such may pose a threat to others, so in cases where we have been exposed, live in an at-risk area of are part of an at-risk demographic, I'd still take precautions.
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irish

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Re: Immune compromised?
« Reply #3 on: March 10, 2020, 02:32:31 PM »
Linda, What does IVIG do to the immune system then? I would assume that at times it protects me from some infections. I would think it depends on the people who gave the blood for my particular infusion. I Guess. So, like everyone else I will hunker down and do crossword puzzles, computer time, cook a little, nap and make the hours go by. Don't intend to go out a lot til things settled down.

Mn has 2 cases....they say. I think it is probably more cause the twin cities is thickly populated and well traveled world wide. Take care all. Irish

eye2dry

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Re: Immune compromised?
« Reply #4 on: March 10, 2020, 02:44:44 PM »
Hello all.

I have been healthy as a horse all my life. Yes, I have RA and Sjogrens but as far as the flu, colds, infections such as urinary tract, sinus  , brochitis...etc...I don't get I'll. I am not on any immune suppressant drugs either.

I feel like my immune system is so fired up and wants to fight anything at anytime that germs don't stand a chance. Yes, I know my immune is also fighting me but that's my take on why I don't get I'll.

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

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

Linda196

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Re: Immune compromised?
« Reply #5 on: March 11, 2020, 03:41:58 AM »
Irish, amazing and very complex question!

Even most hematologists can't fully explain it, because IVIG seems to work both on Autoimmune and Immune Deficient diseases processes, which sounds contradictory. Best (sort of) explanation I've heard is along the lines of changing the oil in your car. You're essentially putting more of the same stuff in, but for a while it works better, because the new stuff is fresh and clean.

The pooled products (from hundreds of donors per dose) contains optimal amounts of IgG, which some of us have in abundance anyway, but the "fresh stuff" prevents any new production of our intrinsic "misdirected" IgG, while providing some from healthy donors with the ability to override anomalies.

The new cells focus on correcting issues that have developed, either from lack of sufficient IgG (deficiency) or misdirected attack (autoimmune). It seems to work particularly well on protecting healthy nerve or muscle tissue that has been attacked by our own defenses, so was and probably still is used a lot of demyelinating nerve diseases like Guillian Barre and MG, or myositis; it also seems to slow or stop temporararily the attack in diseases like Lupus, IPT or autoimmune vasculitis.

Because it seems to have so many actions that are effective in what look like contradictory processes, it does look a bit to good to be true, but it does work!

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Carolina

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Re: Immune compromised?
« Reply #6 on: March 11, 2020, 02:07:13 PM »
Irish, this is what I just learned.

1. My and Your immune system do not make enough IgG, so you get IgG from donors (1,000 to 10,000 donors per treatment).  With IgG from healthy donors you get whatever immunity their IgG has to 'stuff' circulating in the world.

Note 1:  IgG is the main Immune antibody that fights invasive virus, bacterial and fungal infections. Your Immune System makes it.

Note 2:  I have had donor IgG for almost 7 years, and I almost never get sick, because the donor IgG protects me from whatever infections are out there..

2. HOWEVER the donor IgG does NOT have any immunity to the Corona Virus. Corona is NEW in the human population.

3. SCARIEST of all, the donor IgG in my blood cannot 'learn to fight a new virus' like the Corona Virus. Only  IgG made by your own body can learn to mount a defense against a new invader.  (The reason for this is complicated and has to do with the series of events that produces new IgG in your body all the time.  Your body can program new IgG to fight a new virus, but the donor IgG cannot be reprogrammed.)

SO, if you have a Primary Immune Deficiency (I have the version called CVID), you are VERY MUCH immune compromised when it comes to this new Corona Virus.

My husband is a research immunologist and he finally got me to understand what I just explained.  He told me why I cannot go to the Symphony this week, or keep playing bridge 4 times a week, or really go out of this apartment much.  He's bringing me my food from the dining room, and generally I will only go to doctor's appointments for the foreseeable future.

Of course, I still have contact with him, so if he gets sick.............

This is not fun.

Elaine

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jazzlover

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Re: Immune compromised?
« Reply #7 on: March 11, 2020, 04:16:11 PM »
Good info, Elaine.

Thanks.

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

irish

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Re: Immune compromised?
« Reply #8 on: March 12, 2020, 12:14:40 AM »
Linda, thank you so much for that good explanation. I won't be able to repeat it but at least I can still remember what post it is under. You always know the answer to any question and I appreciate it. Have you had Corona in your area  yet? Irish

irish

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Re: Immune compromised?
« Reply #9 on: March 12, 2020, 12:29:19 AM »
Caroline, Thank you and your hubby for that good answer. Thankfully my T-cell deficiency is much improved. Not up in normal range but high enough that it isn't much of an issue. Except that I still do get infections that are weird. So, it will be a crap shoot for this virus for me.

I have got most groceries and need some more, will shop tomorrow and do 2 dr. appointments and then hunker down. This has been a hard couple of weeks. My very close relative went to England, France and Netherlands about 8 days ago and was to fly back with her group this Saturday. They are a collage group with chaperones. I never did hear where all they went but they did not go to Italy. Thank goodness. They flew into London so imagine they will leave from there.

The Travel agency that handles college groups is working on a plane to get them home Thursday or Friday. They will all end up quarantined in a dorm and will be able to go to class on line as the college is going to all online during this corona event. So hopeful that the return trip is uneventful. I bet they are all stressed out and exhausted. Especially the "old" chaperones.

I am also due to get my cataracts done and need to get them done in next month or so. They have grown slow for 10 years and have now decided to forge ahead. Now, getting this all worked out during this health crisis stresses me out. I will admit it!!! May all of you stay safe and away from any air that could bring you harm. Irish

Linda196

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Re: Immune compromised?
« Reply #10 on: March 12, 2020, 04:54:49 AM »
We are a somewhat "worldly isolated" area these days. Most of our economy is tourism and fisheries based, which will present it's own set of problems starting soon, but for now, international travelers and conferences aren't common, so we have only had late contact.

We do have one "confirmed presumptive" case in our province of 776,000. Because of the policy employed here, primary tests are conducted in home areas, then verified at a national facility in Manitoba, so a 50-60 year old lady from the southeast part of the province (I'm in southwest) was primarily diagnosed and is waiting for verification, approximately 24 hours. She had recently returned from a trip to France, is having minimal symptoms, and is self-isolated at home. The pre-emptive protocols are impressive to me, and very well thought out. Preparation for care is in the works, but our hospitals are already stretched to the breaking point, so the focus is on outpatient monitoring, screening and self isolation, with hospitalization and ERs reserved for severely symptomatic cases or those with existing conditions.

The big concern is high school trips, most planned to Italy, and most of which have been delayed or cancelled. One school, already in transit when the cancellations started, will return at the end of their trip , be self isolated at home for 14 days, and be monitored for symptoms. Schools have also told students that made international trips over March break (which just ended here) to stay away from school for 14 days and self isolate. Naturally there are some students begging for a day trip across the border to Calais Maine, but I think their parents are on to them.

For reasons I don't understand, TP has vanished repeatedly from a lot of stores in the area, (mostly Costcos, who have a strategically posted signage suggesting that it may be in short supply) and the bottled water they had trouble moving a few weeks ago is gone! There has been a concerted effort here in past months to stop the use of single use plastics, but now take-aways are refusing to refill reusable beverage containers, bulk stores won't refill customer containers, and I'm waiting for someone to suggest we shouldn't be carrying our reusable shopping bags! To their credit, most box stores have employees stationed at cart corrals wiping down each cart with disinfecting wipes.

Meanwhile, hubby and I have both had some other form of flu for the past 5 days, mild, luckily, but have been self isolating anyway, because around here its sort of the custom not to go to crowded areas and cough on your neighbours, and neighbours will automatically call of check on you if they don't see you around. Since my condition and his COPD make us "high risk', and my training makes it second nature anyway, we follow universal precautions whether we are sick or not. For the record, this is the first time he's had flu in about 5 years, and first time for me in 16. I did have a cold that went to bronchitic a year or so ago, and he has seasonal sinus colds, but basically, as our old GP used to say, we're in pretty good shape for the shape we're in!
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irish

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Re: Immune compromised?
« Reply #11 on: March 12, 2020, 02:51:00 PM »
Linda, You deserve a trophy for the caregiver you are to your husband and yours eve. For a COPD to go 5 years without an infection/flu is a miracle. This comes from the mouth of the wife of a COPDer. It is hard diligent work.

I am fascinated that you grocery store people are cleaning the cart. I have not seen that around here but I am not out everyday so I may have missed it. IN our area we have a big waste container and a container of disinfectant wipes to wipe off handles of the cart before we use it. I appreciated that,

Sometimes I wonder if people are selling toilet paper on the black market. I have also heard of Coscos being out of paper products a lot. You would think they would have a good pipeline for overnight delivery of their supply. I have been out and about the past couple of days and haven't found any hand sanitizer.

I am not a fan of sanitizer but that is a playback of when it first came out. I was working as a nurse and we used it so much then when time to wash our hands it was like washing 1 inch thick jello off your hand. Thankfully they are discouraging the use of the sanitizer if we can't wash with soap and water.

So the decisions we have to make will go on during this viral Covid 19 event. I have to have IVIG next Monday and I need a mask to wear during the whole infusion. I will be sitting with a bunch of people for 6 hours and I need to feel less vulnerable. Thanks Linda, Irish

Deb 27

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Re: Immune compromised?
« Reply #12 on: March 12, 2020, 03:50:31 PM »
I can't understand people stockpiling toilet paper either. The shelf at the grocery store was completely empty today!! They told us they stocked the shelves and they were empty again by 9 am!!!!

I have the Sjogrens, diabetes and asthma. I am more worried about the diabetes and asthma than the Sjogrens, in my case.

I guess I should stay home from this point on. We grabbed a bite to eat today and went grocery shopping. I've never spent that much money at the grocery store in my life!!! We got more than our usual haul at the grocery store since we won't be going out as often. The virus has been detected in the county next to ours.

Wishing everyone good health during this time!!!!






Sjogrens and RA,  Morphea (skin scleroderma), Hashimoto's, 
Nexium, synthroid, HRT, plaquenil,  Restasis, Maxi-tears supplement, L-glutathionne, CoQ10, folate, trintillex,  multi vitamin. lisinopril.

jazzlover

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Re: Immune compromised?
« Reply #13 on: March 17, 2020, 08:02:14 PM »
As for the toilet paper .. my take is that I use a lot of it. So I bought about 40 rolls a MONTH ago. I was not hoarding, but prepared in case I got sick and couldn't get out for more. Or if BOTH of us got sick.

I have at least 7 risk factors and my husband has 3.

So we are trying to stay home and stay away from people.

« Last Edit: March 17, 2020, 08:03:50 PM by jazzlover »
Mast Cell Activation Syndrome (MCAS), Salicylate Sensitivity,  Interstitial Cystitis,  gluten intolerance, Raynaud's, Sjogren's, A-fib; cytomegalovirus, recovered from Lyme disease

Linda196

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Re: Immune compromised?
« Reply #14 on: March 18, 2020, 02:32:43 AM »
UPDATE Since I wrote my original post 6 days ago, our one presumptive case has been confirmed and blossomed into 2 confirmed, 6 presumptive (one a boy under 10) all of whom were close contacts of the original case. Additionally, those 8 have been directly linked to one case in a neighbouring province through a flight some of them took, and all passengers of that flight are being screened and advised strongly to practice self isolation. We aren't at the point yet of enforcing isolation, except in one case of someone who endangered a senior population by ignoring the advice for returning travelers.

To this point all are recovering at home, no one requiring hospitalization, but we still have a huge number of people under voluntary self isolation, all public gatherings over 50 people have been cancelled, many stores and small businesses are closed, limiting hours or access, or on a work from home protocol. Independent small businesses are really going to suffer through this, and there is a concentrated effort to purchase gift certificates from those you usually support regularly, and redeem when possible,so that all income isn't stopped abruptly. Many restaurants that have never done so are offering take home only, dining rooms are closed if they seat more than 40 customers, but the owners are saying those seats aren't being used anyway as everyone attempts to be proactive and conscientious, so take home it is! I'm totally impressed that many of the small business owners are still providing base income for their employees, and rotating them through whatever maintenance jobs they are continuing if possible. For those in the service industry who rely on Tips, this loss is devastating.

All of our "snowbirds"( mostly retirees who winter in southern states) are being encouraged to return home early, before they run into medical insurance issues or border control problems, and they can't fly home other than through 4 somewhat distant airports; no direct air access to Eastern Canada for international flights. Once those travelers return they are expected to observe the 14 day quarantine.

Traffic is minimal, shoppers are sparce, malls are ghost towns, and most if not all entertainment sites are closed.

Saddest of all, funerals are family only, or held for a Memorial Service at a later date.

I keep waiting for Rod Serling to make his voice over and confirm, "we have now entered The Twilight Zone"
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