Nymph

Thanks for everyone who's joined the poll. It's very interesting to see the proportions.

Rich, I just got a skin biopsy for SFN due to Sjogren's on Wednesday. I am very interested to learn the results. However, then there is the decision about meds to make. My rheumy mentioned Rituximab and Imuran. I am also looking into other off-label options, as I am concerned about serious side effects. There are several options in trial now. I wonder if I should just wait...

Personally, I thought he overstepped in that comment. He may be very optimistic about his proposed treatment. However, to be a "cure" it has to completely stop the disease, not just cause remission in a few people, which is what most drugs treating autoimmunity do. In fact, I don't know of a single cure for any autoimmune disease. And I think that it's unlikely that one drug could "cure" POTS across the board, or even in all autoimmune forms. I am very excited for any progress this team is making. However, that sort of comment is inappropriate until results have been produced and replicated in the full round of clinical trials. Even then I would wait for real life to see what the results are in the actual population.

I was just watching this video about sleep in POTS. Very interesting.

Hi Claired,

It does sound like you could be develping heat exhaustion and should probably see a doctor. Also, can you consider getting a window air conditioner to use in one room? I find that if I stay cool most of the day, with shorter periods in the heat, I feel much better than when I have long periods in the heat. I also need to stay cool at night or I am a mess. I would have to live someplace very cold to not need A/C!

Yes, I have experienced weight loss and it has been more of a problem since my symptoms became obvious. I struggle to keep weight on and am currently trying to keep to 95 lbs, even though I would much prefer to have at least 10 more lbs on me. I only occasionally have some gastropariesis symptoms so I don't understand what the problem is, either, unless for me it is autoimmune. I drink weight-gain drinks or drinks with protein at work and this helps with hydration and keeping those calories up. I look for the ones that are not too high in sugar, though, because I don't want to give myself other problems while I'm solving this one. That helps some. I am not losing weight anymore since I started that. Good luck.

If you put "other" - could you let us know what it is?

I hope to learn what the proportions are on DINET. Just curious!

Hi Potluck,

ESR or CRP may be raised in some Sjogren's patients, but it is a very individual thing. Mine always stay low, even when I feel yucky.

Have you had an ANA? A positive ANA may indicate that further tests are needed for specific Sjogren's antibodies. However, many people with Sjogren's do not have these antibodies, and even fewer who have neuro issues.

There is a new test, the Immco, that tests some other stuff, and finds people who ar eother seronegative. I have not had it yet.

Main diagnostic test is a lip biopsy.

Do you have Sjogren's symptoms other than POTS? Arthritis, dry eyes, mouth, or nose? Swollen parotid glands? Muscle aches? Fever, night sweats? Sensory neuropathies? If you have some of these then you should probably get checked out. Routine labs are usually normal.

Although there is a small genetic component to Sjogren's, it only slightly increases your chance with a 1st degree relative, and you could get something else, such as lupus or RA. But you could just have POTS for another reason. Are you hypermobile? That's genetic and can predispose to both POTS and autoimuune stuff.

Hello!

A couple of things:

My dizziness is like an alcohol buzz, but without the fun. Sometimes I also get the heavy head feeling.

I only had dizziness and occasional pain in my legs, and blurry vision, as well as anxiety-type attacks since these becam noticeable in 2010/11. I did not develop exercise intolerance until this past year, leading to my POTS dx. I also consider my symptoms mild since learning more about what others experience. In fact, I am not sure if I qualify as fully-POTS or not, but am sure that I have some dysautonomia that affects my quality of life.

There are several other things I relate to but don't have the time right now. Welcome and I hope you continue to improve.

WHoa - just looking at this again. This looks quite safe and has shown promise in MS:

BCG Vaccine

You are welcome! I hope that you find some answers and a way forward.

I was told by my rheumy that to treat the neuropathy they use Rituxan or Imuran. Both of those have some potentially serious side effects. A few people get igiv. I think it is rare to get that approved. Thankfully there are more drugs in the pipeline for Sjs. I am not sure which ones will prove helpful for neuropathy. Take a look at this for the drugs being tested: http://www.sjogrens.org/files/sq/WinterSQ2015.pdf

Best

A few helpful articles:

http://www.ncbi.nlm.nih.gov/pubmed/22976617

http://www.the-rheumatologist.org/details/article/6904931/Systemic_Sjogrens_More_Than_a_Sicca_Disease.html

http://brain.oxfordjournals.org/content/128/11/2518.short

Correct. A significant number of people are sero-negative, and especially with neuro complications. The lip biopsy is just that - they take a slice from the inside of your lip, put it under a microscope or something, and look for infiltrates - B-cells that are damaging tissue in there. It has to be done right and read by a pathologist with experience with these. A lot of people never get the biopsy because it hurts. Also, it might not become positive until later in the disease. Personally I would get the Immco test, which is another blood test that measures other stuff.

If you think you have Sjogren's I would recommend contacting a local support group through the Sjogren's Foundation and asking for a doctor recommendation. That is how I found my doctor who is up on the literature and is willing to treat a non-textbook case.

Basically if you have arthritis, dry eyes, mouth, or nose and throat, swollen parotid glands, and/or SFN along with POTS it might be worth looking into, more so if you have several of these. Check out the Sjogren's Foundation for more info.

Hi Artluvr. I am so sorry that you feel this way. I know the feeling and it is awful! This is what I would do:

Eat salt and protein.

Drink a ton of elctrolyte drinks and water. I also drink tea but that may or may not be good for you. If you don't know that it soothes you then this is not a good time to experiment.

Listen to soothing music and spend some time outdoors watching the birds or the bugs or whatever.

I hope that you feel better soon!

hugs,

Nicole

Hi Michele,

I am sorry you are feeling so crummy. I have Sjogren's, and before I was treated for it I felt the way you are feeling for two years. I still get that feeling when I flare but in general it is gone. I take Plaquenil and it takes about 6 months to really work. I can say for sure that mine is not POTS because my POTS has gotten more severe and more regular during the last year but the malaise has not come back. Many autoimmune connective-tissue diseases are treated with the same drugs (DMARDs). Some are relatively cheap and reasonably safe. If I were you I would explain to your doctor how you feel and how this is limiting your activities and your quality of life. They can use low-dose Prenisone as a bridge treatment and that might help, too. I know for me I also get depressed whenever I have that crummy flu-feeling. Many people are treated for autoimmunity before a definitive diagnosis. In fact mine is a working diagnosis. I am thankful to have a doc who is willing to treat even though she is not 100% sure of my exact dx. This is because these diseases are closely related, and many symptoms are caused by teh same thing (inflammation).

Take care of yourself and keep seeking help!

hugs,

Nicole

I also do not have a firm diagnosis, it's more of a working diagnosis. However, since I am seropositive for RA antibodies (anti CCP), and that does show up in about 5% of Sjs patients, and I do not yet display signs/symptoms of RA... well. It can be frustrating because little is known about what it means! SSa and SSb are the classic blood results ofr Sjs. However, there are new antibody tests such as the SJO/Immco test that are sometimes used.

The lip biopsy is the "gold standard" but I have not had it yet. I may get it soon if I go to Johns Hopkins. I think that they require it.

Sjs causes a number of neuropathies. I believe that trigeminal is the most common, followed by SFN-sensory. But it can cause other kinds, including central, motor, etc. Why? That gets into the immune process and I then get lost! I am not sure if it is a direct autoimmune attack (antibodies) or indirect (cytokines, etc) due to inflammation. There is so much unknown about Sjs. Thankfully, the research pace seems to be picking up.

Sjogren's makes you feel sick and tired anyways. But if you have dysautonomia, too, that's going to add on another layer that may be hard to distinguish, especially if you aren't informed! I actually think that my Sjs is pretty well under control (arthritis, malaise, glands, etc) except for the neuro aspects. I now think that many of my daily struggles are now due to POTS, which may or may not be caused by Sjogren's. To test that I would really have to get on stronger drugs to control the progress of neuropathies and see if it helped. My POTS is fairly mild, though. But I don't want it to get worse. Also, I've started dropping things - possibly due to neuropathy - and I don't want that to progress! Basically I am seeking a way to halt this right here because I really want to at least maintain the quality of life I have now and not become disabled. Either arthritis or neuropathy could sideline me if they progress but right now the neuropathy is pulling ahead.

Are you being treated for your probable Sjogren's?

It's possible. Sjogren's is under-diagnosed. I think that there are more people on the Sjogren's forum who report dysautonomia. However, this is also underdiagnosed and awareness is low so many with Sjogren's probably don't know that they have it. They just think that they feel like crap because of Sjogren's. That's what I thought. You don't come across dysautonomia often in the Sjogren's literature. SFN is mentioned much more frequently.

Right now I am working as an elementary assistant, 2nd grade. I could never teach elementary! It's too much energy, paperwork, and organization for me! I plan to teach high school. I'm getting licensed in social studies. However, I love teaching languages. My heart is with Hebrew, but of course there's not a big market for that. I would also enjoy teaching ESL or Spanish. Much depends on whether I end up in a public or private school.

Do you have the energy for preschool? I can't imagine keeping up with them!

This is a great idea!

In my case, I do not know whether one caused the other. Sjogren's could have caused both. Or hypermobility could have predisposed me to POTS and Sjogren's, which then caused the SFN. Or... or...

It does seem like SFN is commonly caused by Sjogren's. I will be interested if I ever get treatment for that, if it also helps my POTS or slows the progression. I'm not sure how I would know if it slowed progression of anything, though, as my symptoms of everything fluctuate ALL the time!

Must be time for a nap.

Liv.Elise, Thanks for sharing. I love hearing about people who teach/ have taught with a disability! It's encouraging.

I don't know, either, but would be interested to find out as I too have both.

I have been struggling lately whether or not pursue teaching as a career with mild POTS as well as Sjogren's Syndrome. I am in the second year of my licensure program. This semester I have been researching teaching with a disability, as well as working as a teaching assistant. I want to teach at the high school level.

Currently, I believe that I can teach, if I find the right school and setting. But I have days when I do not not think so. At this point I am going to take it one day at a time. Online teaching is becoming more and more common, and I may transition to that in time.

Thanks for clarifying. Have you already had an echo and ekg to rule out heart problems? If so, and there's no answer, looking for a doc who's familiar with POTS may be helpful.

I have had a harder time adjusting to high altitudes for the last several years since I've had POTS symptoms. However, I have not lived at a high altitude since that time. I do adjust eventually, though. It seems to work better if I give myself a buffer zone of several days - i.e. spend several days at 3000-4000, then move up to 7000 (easy to do in AZ!).

The dryness does affect me but I also have Sjogren's. Keeping hydrated itself was not a problem, but I do not have gastropariesis.