Low Dose Naltrexone is a lifesaver. Not enough people know about this. Stopped my Sjogrens in its tracks. Had onset with over a year of dry eyes, dry mouth, then suddenly swelling of glands, neck head and acute pain for which there was no relief and the only treatment recommended by my Consultants was paracetamol followed by ibuprofen. Never having been a taker of these drugs, I could not tolerate the idea of taking them long term. And they didn't work. I could not stand the prospect of being bedridden and in acute pain longterm. So, I did research online and found this off label drug. Cheap as chips which is why it is so little promoted. I wish more people knew about it. This appalling suffering and ruined lives is absolutely unnecessary. I also have MS so one autoimmune disease followed another, or so it was explained to me. A life sentence, progressively worsening and accumulating other autoimmune diseases as I go. Lovely! Well, Im here to tell you, no relapses since taking this med, and of Ms either. Needless to say, neither my Consultant neurologist, Endocrinologist, Gastroenterologist, Rheumatologist, Food Allergies consultant prescribed it. I did the research and presented my evidence to a Pain Consultant. He wrote the prescription. Fixed in a week. Unbelievable. I won't be coming off this, ever.
Its not produced by big pharma but by your local compounding chemist( pharmacies who can mix their own meds so its available in liquid or capsule form) Who needs fancy schmancy labels and brands? My Pain consultant said, if it works for you, then you're a very lucky person. And you find out very quickly too. It took me a week of one capsule at night. Guess what? No side effects, except if you consider loss of acute pain, mouth ulcers, dry mouth, dry eyes, swollen glands the side effect of taking this med? Oh and I should say, a big improvement in mood. And why not, when all of the above is eliminated. What it seems to do is arrest the disease, not eliminate it. I can live with that. I have also added in Niacin(the flushing variety) which helps my skin big time and has the added bonus of combating atherosclerosis. So, really, really worth a try for anyone with this or one of the many other autoimmune diseases. Go in peace. : )
This is a difficult syndrome to explain to others as it is always defined by, 'dry mouth - dry eyes. Unfortunately, there is so much more to it.
I was first diagnosed while looking for and answer to my aching body, unrelenting fatigue and muscle weakness. This had gotten so bad that I lost my ability to walk without assistance for almost 2 years. I am back walking again and riding my bike but when I start going through the whole fatigue thing, I get wobbly in my walking. So that's my, 'flare up' with Sjogrens bio.
To me it sounds like you have a bacterial infection. Maybe caught at a hospital or who knows where. I would test with a simple urine test to see if,you have any hidden things going on. What you explain sounds sorta like myself last,year. I treated and now I'm recovered.
In my 20's I was hospitalized 4 times with severe flareups - vomiting, migraine, nausea, strange feeling of a sore scalp - sore throat - - aching body - the first two times I had an enlarged - golf ball sized parotid gland -
Every time it happened I was in a different city - doctors would never believe me that it was Sjogren's - I would be labelled a difficult patient -
I knew what was wrong - that I needed prednisone rather than antibiotics but every time it was a big fight with doctors - they always thought it was an infection
On one occasion the rheumatologist who diagnosed me and is a saint - (I now live in a different city so can't go to her anymore) came to the hospital I was at - not the one where she was working - and gave them orders - after they gave me prednisone it was like putting air into a blow up doll -
I came back to life -
Each time it happened I was actually not sure I would survive - and almost didn't care I felt so sick -
Another time - a friend who was helping take care of me at the hospital somehow got the rheumatologist to call the hospital in London and explain to them over the phone what I needed - -
Again, with prednisone I came back to life like a blow up doll - though the doctors were always unhappy at being told what to do
I have often thought one severe flare up came after I had an abortion and another came after I was exposed to mold
It has now been 20 years since I had that kind of severe attack
Since I have been in my 40's I get mini flares that keep me in bed for 2 - 4 days -
symptoms are the same - fever, headache, joint pain - but I seem to be able to control them with a high dose of coated aspirin
An interesting side note is that I got a mini flareup after getting a deep tissue message, and also one after taking a Bar Method class - Bar is a type of fitness class where you isolate certain muscles and work them until the muscles begin to shake
I am currently on a remote island off the coast of Eastern Canada
I just got out of the hospital after another incident where the symptoms were exactly like a Sjogren's Flare - severe headache, nausea, vomiting, fever,....
I did have a UTI leading up to becoming sick - and apparently it spread into my kidneys - then out of the blue the doctor said I also had pneumonia -
I was in the hospital for a week - I have now been out for two - but feeling terrible - crazy fatigue and a feeling of strain in my chest - I had a second X Ray and apparently everything is looking good - no trace of pneumonia and blood work looks good - though they are not testing for Sjogren's stuff -
This time I think I really did have the two infections because the antibiotics cleared things up - but I just still feel that something is wrong -
The doctor said I should be feeling fine now - his only advice was to eat more - which seems lame and patronizing - - but I do think I need to rest a lot
Wondering if I should contact my rheumatologist in Vancouver to see if Plaquenil would help - There are only two doctors on this island and they have never heard of Sjogren's
My new rheumatologist is trying to learn but has never witnessed a flare-up like the ones I get so I feel like there is no one who understands except a few friends who have witnessed it
I am also going through menopause and wondering if that is making things worse - not sure how hormonal changes affect Sjogren's but would be interested to find out
Anyway - just wanted to put my story out there.
I feel I know my body - it's frustrating to have an experience with an authoritative doctor who does not know or want to listen -
I have tried both Salagen and Plaquenil in the past year - but - Salagen did not help much though I am going to continue trying it - and Plaquenil I only tried for a couple of months and didn't experience a difference- but then encountered some severe stomach problems so went off - though maybe I should give it another try - stomach issues have cleared up - I would just prefer to do other things and save medications for when I am older and have no choice -
I see a Naturopath who helps with diet, acupuncture and homeopathic medications
But here on this island there are options for other people to see.
One last note - I recently had to have my front tooth pulled out - something rare called resorption - my teeth are generally a mess after living with Sjogren's for almost 30 years -
Resorption also sounds like an auto immune thing - your cells attack your gums -
my doctor said its like your tooth eating itself -
The process to prepare for an implant with the bone graft etc also has taken it's toll
Tough road to hoe is right.