Can Sjogren's be confused with Cytokine release Syndrome ?

Gonzalez Gary Jackson John Anderson Kevin

Are there any other men in this thread? I'm curious as to how many of us there are and what your diagnoses are. The duration of your fight against yourself has been happening, and what works best for your symptoms. I have multiple diagnoses. I was first diagnosed with Juvenile Rheumatoid Arthritis(JRA) when I was about 10 y/o. I have been battling Autoimmunity for almost forty years now, so I am in pretty bad shape all the way around. I have a diagnosis of MCTD also, which two separate Rheumatologists diagnosed me with. Another autoimmune diagnosis I have is Hughes Syndrome, AKA Antiphospholipid Antibody Syndrome(APS). Due to the APS, I developed Avascular Necrosis(AVN) in both hips and both knees, which caused the joints to collapse at the age of 25 & 26 y/o, respectively. All four of those joints were replaced at that time. In Nov 2022, I had the 5th occurrence of AVN in my right ankle, which had to be fused at the Subtalar Joint with two 4-inch screws implanted. Sadly, the left one is next in the near future, but a human being can only take so much punishment. i have a diagnosis of Sjogrens Disorder also. The most recent diagnosis is SLE. However, it is a working diagnosis. I have been referred to a very, very good Rheumatologist, by all accounts, in the last week. He works at the University Hospital here. They are up on all the new treatments, and I am very hopeful and optimistic. Having all of this going on makes me wonder if a lot of it would fall under the umbrella of Mixed Connective Tissue Disease(MCTD). I have abnormal Alk-p liver enzymes. I also have abnormal BUN, Creatnine, and the BUN/Creatnine Ratio kidney enzymes, which are abnormal. My NTproBNP numbers are elevated into the 550's-600s. I have heart disease just for good measure. I have only recently found Dr. Ortiz. It would be nice if she was local. I would certainly give her a shot! She's very knowledgeable. If anyone has any of the issues I have I would love to hear of your treatments. God Bless.

It sounds like PMR will eventually go away, but possibly, prednisone helps make it go away sooner. Is that correct?

I wish I could find a a doctor like you. I feel completely unseen and unheard by my rheumatologist. 🥴

My pain is on both sides equally of my biceps (feels like soar, weak muscle) and clavicle area (a soreness in the center btwn chest bone and shoulders) and the neck, high on both sides where the skull meets the neck. There is a lot of popping in the shoulder and even my wrist area. I don't think I experience issues of the hip, but at times deep in my gluts (again, both sides). Still trying to determine if this is PMR. I was told that it is not RA. Blood work comes back fine. Can this subside on its own? Wondering if this is stress induced. I have always been otherwise very healthy, but increased stressed over the past few years.

Carnivore all the way…….

Perhaps a mention of psoriatic arthritis?

I was diagnosed with sjogrens in my late 30s. I had health issues my whole life. Diagnosed with fibro, gastritis, GERD and more. I was finally diagnosed with Ehlers Danlose Syndrome at 67! I need both shoulders and my other knee replaced. I had left knee done 10 years ago.

I have Autoimmune Hashimoto's and I am eating the AIP Autoimmune Protocol. I am also on a thyroid hormones and the supplements my blood labs suggest. My Hashi antibodies are down to just 42 and my condition is stabilize.

You have a night shade tomatoes, can we eat night shade vegetables. I guess I’ll try them,I don’t know about others with RA but for me the wrong food sends battery acid right into my hands and wrist. For me dairy, breads, meats make me beg For prednisone.

Great topic! Thank you, Dr. Ortiz!

Don't forget pineapple 🍍 it has an enzyme called bromelyn which is anti-inflammatory, pineapple was all I wanted to eat for about 2 years when I got ill.

Such a lovely sensitive approach. Severe sleep apnea lead to carb loading to try to keep going which led to type 2 diabetes plus I have Ankylosing Spondylosis , Hashimoto's and possibly Psoriatic Arthritis. I spend 4 years on severe carb restriction and intermittent fasting and just could not loose weight. Doctors were so dismissive and condescending and my life was miserable. I lost all enjoyment from food and the social connection that goes with it. Finally just had to give up. It feels so horrible to have failed so badly. Your sensitivity helps to heal this wound. Thank you.❤

Excellent explanation, thank you. I have antiphosphospholipd disorder, not active for most part, can you do a video on that?thank you

I cannot get the info to come up to order your handbook-how can I get it-?

Thank you

I appreciate your perspective, food has been on my mind all the time since having RA, it’s a bit overwhelming.

Since I feel great after the first day on methylprednisolone why do I need to continue with the rest of the pills? What is the reason to take the whole pack? I understand why if this was an antibiotic, but why for the Medro Dosepak?

Very Informative! Thank you for your knowledge!! I have been seeing a Rheumatologist for 4 years.She has never discussed diet for my condition. Its always about trying the next pharmaceutical drug. I have done my own research about anti inflammatory foods and vitamins. I feel so much better now!

Thank you very much 👍

You need low dose Prednisolon 5-10 mg prednisolon/ day. Vit D , calcium, magnesium. I use metformin , telmisartan and some times Pantoprazol.

Ii have sjogrens eds n MCTD feel so ill all the time and my histamine is attacking my body RA x

Thank you for this....well explained knowledge. I have felt some changes with my joints 1-2 years ago and Im not minding it until I reached 50 and started to feel pain most of the time especially with my hand....although Im feeling pain here in my lower back and sometimes knees too. Actually I dont know what to do, until I've watched this video. I think I need to see a Doctor, but I'm a bit hesitant coz what if they just give me prescription and thats all. I'm hoping that the first Doctor I'm going to meet will be the last....meaning, that he/she will do everything you've said in this video.

I love your videos. They are extremely helpful to me, but I found the music, although very nice, to be quite the distraction and unnecessary. I don’t mean to be critical. You are so interesting without it!! Thank you 😊

I would actually be interested in learning what drs can diagnose and how we know when it’s an actual diagnosis. I have codes for diagnosis at one spot I guess where it’s suspected and can’t tell if a certain dr says I have it if it’s actually counted as diagnosis or not. For example my Ophthalmologist put on my reporting have sjogrens. Does that count or is it just an option? I really think this would be helpful. My family dr told me if I have listed in notes from Dr under that them I have it but when it comes to Myasthenia Gravis my Rheumatologist and family dr and eye dr says I have it but the actual specialist says I have to have them to actually diagnose it so I don’t know. Can you help with this question?

Very helpful. Thanks

That's the most sensible info I've seen will Ginger fix it

My Mom had Sjogren’s. I have dry eyes and mouth but negative ANA and low IGg so my doctors are not pursuing anything further. I also have joint pain (from EDS dislocations) and muscle pain (diagnosed as fibromyalgia), skin rashes (obviously allergic in nature although I have no tested allergies), hair loss, butterfly sun rash, numbness in my toes and calves (doctor told me I must be imagining it 😢), headaches, shortness of breath (part of my non-allergy allergic reactions).

Late response. Not asking for diagnostic purposes but I’ve been non detectable for chronic HCV for 4 years now, spontaneous clearance after having my son…. My RF is high but anti-ccp’s normal, all autoimmune testing is normal…. I’m afraid my rheumatologist will tell me it’s just the HCV…. Would RF still come back high if I’m hep c cleared for years??? Or is that something that will always be there no matter clearance or not?

Thank you for sharing this information. I’ve recently been diagnosed with scleroderma so this helps me.

Hi Doc , I recently emailed you regarding a proposal to design your youtube thumbnails. I hope you had the chance to review it.

I have MCTD ( Lupus primary, sjogrens, myositis) Raynauds and inflammatory arthritis. Diagnosed 4 years ago. It's a battle but I try to take it one day at a time.

Jackson Karen Gonzalez Kevin Clark Michelle

Your videos have been so helpful, thank you for taking the time to help us understand this complicated condition.

I was diagnosed with sjogrens fibromyalgia and neuropathy 20 yrs ago I had lip biopsy blood test and liptist paper in my eyes now gott RA mctd inflammatory bowel disease urinary inconvenience pituitary tumor osteoporosis eds hyper mobility huge blood cells macrosis breathing differculties slip disks 13 bulging now blood pressure drops when standing only thing keeping me going is my twins

I have been diagnosed in 2006, dry eyes, dry mouth, fatigue, and big GI problems. Used plaquenil affected my eyes. Stopped it, but the effect is staying. Also muscle ache. I use Evoxas, eye drops, Restasis, and ointment at night. Also have constipation and mutility.

I’d be interested in hearing more about the blood testing and learning about each one from you from your perspective of course I can look it up anywhere but I’m wanting to hear it from you

I was diagnosed with PMR the 28th of August last month. Like you said it hit all at once and I was so stiff could hardly get out of bed, horrible nights sleep and could barely walk. I told my wife I felt like I was dying prior to being diagnosed. My Dr. started me on 20 mg of Prednisone and now on 15 mg for a taper. The 2nd day I felt like I had a brand new body ! Have been doing very well and am so Thankful !

I’ve just been diagnosed for one month now. ANA positive since 2018 Just had the HLB-27 test, X-rays & MRI TO confirm. My dad has psoriasis. I’ve already lost both knees & had both replaced. I randomly mentioned to my rheumatologist about my lower back pain & pain in butt. Having no clue about this disease. I’ve blamed my lower back pain on what I thought was a “ bad epidural “ having my son ( now 25 yrs old). I have had to wear a boot for my heels & had several shots in both feet for “ issues”. Again, no idea about this disease. I currently also have shoulder pain & weakness in my left arm. I can’t even shrug my shoulders without pain. I get recurring eye inflammation similar to pink eye which turns out to be uveitis. Who knew? I just thought every one hurt this bad. I would describe my back pain like a hot/ burning pain. My feet feel sore on heels & like I have broken bones on top part of feet. No meds have been started as I’ve had BRAF POSITIVE thyroid cancer with lymph node involvement. Not sure I should go on immunosuppressant drugs until 5 yrs no recurrent cancer. I’m used to hurting. I don’t remember life without hurting at this point. The progressive inflammation is what is my biggest complaint. I can barely bend my legs. My hands are hurting & burning & swelling in knuckles. 😢 I’m kinda happy & sad all this has been discovered. Not sure how to process what my future holds. I trust God has a plan for me.

Would be interested if others have digestive issues.

Perfect. Thanks

Great information, but please speak more slowly so I can digest what you are saying.

First comment! Thanks for talking about more than just dry eye!! It’s worse than just that. However, I do have dry eye and had to get my tearducts surgically tied closed to prevent my tears from draining too fast. I also only had a pos ANA at 1:80, and a pos SSB, and a neg lip biopsy 4yrs ago, and then just recently finally had a pos SSA show up with my SSB, and was able to get diagnosed finally! I now also might have lupus developing too, cuz I had a pos ant-dsDNA too. So that’s fun! Yay! 😅

i'm 68 diagnosed last week. mine was caused by H1N1 influenza 5 yrs ago as far as i know ( when i first got sick)

my grandpa had crippling arthritis 😢

Help me please 😢

I went to my GP last year with a swollen finger did bloods got a positive ANCA the results was query vasculitis, but because I have IBD the GP looked online and said as I thought that's positive with IBD no further investigation fast forward 18 months said finger is completely deformed and the next finger is now swollen and inflamed so finally got an urgent referral to rheumatology. Not sure if vasculitis can cause this also got possible raynaud's but not been diagnosed.

I have chronic back pain which got worse during pregnancy, MRI was done after my pregnancy and diagnosed to have AS. But my blood work came back as negative. Because i work in health field, i dont want to get on biologics as it will suppress my immunity. That would mean working bedside will be challenging.. what other options do i have?

Thank you for explaining so simply. If the rheumatoid factor is present does the rheumatologist only go off blood work to determine rheumatoid. Told primary Sjogrens and osteoarthritis but not rheumatoid. Symptoms chart I fall more into rheumatoid. Trying to determine if Sjogrens is primary or secondary. Then there’s the fibromyalgia and neuropathy that contribute to symptoms which all seem to overlap. Can’t find your video link for the RA vs OA. Had hashimotos for many years and then Sjogrens beyond dry mouth. Love your videos, very informational 🙏