Hello everyone

[Mariechristine]

Sadly, i was diagnosed with Sjogren yesterday. It was totally triggered by the COVID vaccine in my opinion. Was fine before.

I am devastated and scared. The more i read the worse i feel. I guess i should have stayed away from the internet.

So far i don’t have dry mouth. But all kinds of symptoms following the vaccine (litteraly that week of April 6th) i got J and J.

Some symptoms are related to Sjogren some are not.

I think the disease was dormant in me. The vaccine triggered a flare up. Doctor prescribed hydroxychloroquine ( ironically…. )

I would appreciate some tips on how to manage the redness of eyes also. I also suffer major bloating for no apparent reason. Doesn’t seem food related. I cut down gluten and dairy. No luck 😞 is it typical of Sjogren?

Doctor told me to stop all supplements. I’d rather eat healthy and take supplements than use RXxx. Guess i have no choice.

Thank you for your help in advance

[karmel]

What is JJ and J? I have secondary SS. When I was first diagnosed I didn't know what SS was and became a member of BSSA, I found it a great help, They have a telephone helpline where you can speak to a nurse (they have SS) and they have an on-line forum which is very informative. I have dry eyes, dry mouth, joint problems and IBS but not sure if these symptoms aren't also symptoms of the other syndrome I have

[Mariechristine in reply to karmel]

Thank you so much 🙏

[dg70]

I have used eye drops, actimist spray, heated eye mask 10 mins every day but it was fighting a losing battle until I was prescribed Pilocarpine, it's been so good. I take it three times a day, it gives you moisture everywhere unfortunately including perspiration but that only lasts the first hour or so after taking it. The eye pain and soreness, dry mouth, nose and other places has gone down 70% since taking it. I still have to take the eye drops but a lot less per day and I do the eye mask as that softens up your eye oils which is soothing. Worth seeing your GP or Rheumatologist about medication. You just have to deal with the down side of hot flushes a few times a day.

[harmony2 in reply to dg70]

About flushes from pilocarpine, sometimes if I drink about 10 ounces or 300 mls of water, over a 2-3 minute period (not gulp all at once), and if I swallow the pilocarpine WITH THE LAST FEW SIPS, then I don’t get the sweating. Also that much cool water at once gives me a stomach ache so I drink it warm (half boiled water topped with tap water). I use a flask of warm water in the night for meds.

[dg70 in reply to harmony2]

Thanks I was taking it with water or tea but now read to take it on as full a stomach as possible and that seems to help. Unfortunately I think the pilocarpine just taps into my menopause flushes but at least the bowel incontinence is under control taking it with food. I persevere because its great in terms of treating the eye pain, dry nose and mouth and lessoning headaches. The joys of medication. What they give with one hand they take away with another🤣

[SusieW2]

First, I am not a Doctor or other health care professional. But none of my doctors including Rheumatologist and Naturopath, have told me to stop supplements. I also prefer trying naturopathic remedies before turning to medicines. Though I also take Pilocarpine/Salagen which helps my dryness a lot. In US some clinics use an integrative approach combining western medicine with everything from acupuncture to supplements and exercise. They support identifying your individual needs and addressing them with what works and has the least side effects. I get a hormone treatment from them and monitoring of blood levels and advice.

I also get a lot of bloating and haven't quite figured out how to control it. I do know that corn and beans give me gas even more that those other gassy vegetables. I had all but eliminated dairy except lactose free. But I'm adding a bit back in small quantities and feel full fat is easier to digest.

I also use homeopathic remedies, cell salts and supplements like Turmeric and Omega 3 & 6.

Good luck on your journey! Keep exercising and taking care of yourself to feel as good as you can.

[Mariechristine in reply to SusieW2]

Thank you so much. I feel lost and devastated. I really resent myself for falling under the pressure of getting vaccinated. I am 100% convinced the disease was triggered by the vaccine. Fda did state that autoimmune disease is one of the possible adverse reactions to the vaccine. It has affected my spirit tremendously. I guess I should not have gone on the internet. “ ignorance is bliss” Don’t trust doctors at all anymore. I saw so many after my severe reaction to vaccine , none seem to take me seriously. Not sure why i would make this up . Anyway…. Waiting to get worse and feel worse i guess 😞

[LindyK in reply to Mariechristine]

I’m so sorry you do not feel well! 😢 I believe there has been misinformation and disinformation posted about the vaccine in an effort to push it and profit from it. I had covid and therefore have natural immunity which is enduring and robust, so I chose not to take it. Also, I believed the vaccine could make my autoimmune disease worse and I was/am confident per the data that early treatment (ivermectin, Hydroxychloriquine in combination with other things) work very well to lessen the likelihood of serious illness and hospitalization from covid.

I feel sad that accurate information about the risks of vaccines was not widely shared, in fact it was suppressed. People have allergies, different health problems, and other factors to consider. Individuals should make their own risk/benefit analysis. Vaccine adverse events are now something the media and medical community do not talk about, and big tech censors people who offer opinions and data. Sad times we live in right now in my opinion.

Hoping and praying you feel better soon.

[kalona46 in reply to LindyK]

I agree 100%. Here in the states they pulled hydroxychloroquine and ivermectin from we the people. Ran it down like it was insanity. Then suddenly Azithromycin was unavailable. People here went crazy in the do called pandemic.

I got covid in march 2020 and stayed home alone. Was very sick with pneumonia but I had great coughing strength as I use a lung exerciser called IsoBreathe. Plus, I knew if I went to hospital I would die because no one knew what it really was not how to treat it. The put people on respirators flat on their backs and allowed no family in. Do, the ones who died did so all alone without their loved ones and their only sight was this strange people in hazmat suits!

I would never take the vaccine or ever be locked up again either. Pharma got wealthy as did the elites.

Get healthy, get off sugar and carbs, walk. Do your research. Most medical professionals have no clue how to treat Sjogrens. Practice coughing every day, build up your immune system. Yes, Jamaican Black Castor oil will regrow your hair back.

Please pray about it before you take any more of those jabs or boosters. This year Pfizer forecast it will receive $54 billion revenue from its covid vaccine. Let that sink in.

Eyes wide open. I'm 76 and I'm determined not let fear control my life. I started the Keto lifestyle about 6 weeks ago and I'm feeling amazingly stronger day by day.

God bless you.

[LindyK in reply to kalona46]

kalona46 I agree 100 percent with each and every point you made. My sentiments exactly! So glad the keto diet is helping you!

[SusieW2]

I was vaccinated last January and February. I have not noticed any significant worsening of my Sjogren's since then. Perhaps a bit more dry eye and aches. But I want to say that everyone's SS journey is different. I was diagnosed over 20 years ago via a blood test involving a chart of my T and other types of cell before I had much in the way of symptoms. My symptoms have come on slowly over that time. I am still active and mostly feel OK at 69 years old. Fatigue and dry sinuses are my most bothersome symptoms. I have done a lot of research over those years to find ways to minimize SS effects. Your journey may look very different but there is no reason to believe you will get worse quickly. You need to find a doctor who acknowledges Sjogren's as a multi-systems involved disease and listens to your experience of the symptoms. Hopefully he or she will be open to alternative practices like homeopathy, acupuncture, cell salts, etc. to alleviate symptoms. A couple of quick things keeping in mind that I am not a medical practitioner: A humid environment is essential especially in the winter months when heating is happening. Vitamins D and Iron levels will influence your fatigue (as can Ginseng if Doc is willing for you to try it.} Exercise as much as you can. You need to persevere in being your own advocate. Use the resources available like online groups like Sjogren's Advocate: sjogrensadvocate.com/ and Sjogren's Foundation: sjogrens.org/understanding-.... It will undoubtedly be frustrating as there is not enough attention to this disease. Try to look forward with some hope.

[Mariechristine in reply to SusieW2]

Thank you so much. I am seeing a second doctor at the end of the month for a second opinion . See what treatment he recommends. Right now the only symptoms I have is my eyes. My mouth feels a bit dry but i am not even sure if it’s in my head. First doctor put me on Hydroxychloroquine. I started three days ago.I noticed 3 years ago , I started losing A lot of hair. All tests for automatic disease and blood work in general was fine. Looking back maybe the disease was dormant. I am losing soo much hair over time. At least 50% of my hair density is gone 😞

What s your opinion ? Thank you.

[SusieW2 in reply to Mariechristine]

So that sounds about how my disease started. You could have many good years ahead. I did take hydroxychloroquine for many years. But I stopped and went to turmeric and Omegas. Just my choice. No real reasons like study findings. I do have thinner hair but not a worrisome amount. I did have thick hair. But menopause could have had something to do with that. Thyroid levels can affect your hair. You'd have to take that up with a Doc. It's hard to find one that will react to thyroid levels inside their designated box of "normal range. (But my Naturopath MD is treating my somewhat low thyroid level. It's lessened my fatigue. But I searched for someone who would do this that was covered by my insurance.)

Good luck with the second opinion. Hopefully she/he has some knowledge of SS. But know that there aren't really treatments for this initial, low symptom stage. You mostly can just try to live as healthily as you can: rest, food, exercise, humidity, hydration, limit chemicals/additives/toxins, fun, etc;. whatever makes you feel better.

😆

[Mariechristine in reply to SusieW2]

Thank you.Are there SS specialist ? do we all stick to rheumatologist?

I am not sure why she put me on meds now though. I guess i forgot to ask. Am i not supposed to wait for symptoms to get worse ? Will they for sure ? Sorry, i am lost. So many questions.

[SusieW2 in reply to Mariechristine]

There are rheumatologists who have more experience with the less well known inflammatory conditions like Lupus or SS. There are not SS Specialists in the US.There are a few drugs that address the symptoms like Pilocarpine/Salagen for dry eyes and Hydroxychloroquine in the long term. My Doc originally gave me the option of starting Hydroxy... But, like you, I was just diagnosed, scared and wanted to do whatever I could to improve my health.

There may be something new that I don't know about. But I've seen 2 new Rheumatologists in the last few years in US and they didn't have any new meds to recommend. It must depend on your symptoms and where you are. Other people in Australia and Great Britain have reported taking other meds. Each case can be different. I have had symptoms for 20 years and am still functioning as a wife, mother, friend and volunteer. Be sure to make a list of these questions to take to your next appointment. And try to keep busy to keep your mind on nicer things until you know more.

[Mariechristine in reply to SusieW2]

🙏