Two questions: a)is Sjogrens common or rare and is tendonitis a common feature?

[MAT51]

Anita this was such a briliantly helpful reply, that I've copied and pasted it on my health journal so that I can return to it for my own personal reference often.

I described to this person, the way that the burning pain has disappeared now from my arms, legs and mouth most of the time, and been replaced by tingle and numbness in my limbs and face. She thought perhaps that this meant that the SFN was now inactive and that it's the inflamed connective tissue that is causing my present pain and weakness rather than SFN. She wondered if the numbness and tingle were due to past SFN damage and if the RA type pain is on the ascent again. She did feel that this history of SFN would account for my disequillbrium rather than anything vestibular -but I still want this checked out by ENT because of the tinnitus and historic issues such as Bell's Palsy and adult Myrengitis.

My instincts tell me that what she said is correct and, having read your own descriptions of the SFN pain as it escalated for you, on previous threads, I don't think much of the pain I'm currently experiencing, is neuropathic. The SFN was hellishly painful a year ago but these days it is the duller, toothache-like pain that tends to bother me most. Things don't burn much any more and the pain is more subtle.

When I asked this rheumy doctor (not yet a full blown rheumy consultant, as we call them here) about the pain in my elbows -which I've had for years and which is same as pain in my knees and ankles, he examined one elbow for swelling and tenderness and explained that this was my tendon and the pain is tennis elbow. I asked him if this was SJS related but he said it wasn't.

But I absolutely know it is, which is why I asked about it here. Tennis elbow would not be bilateral and affect both arms and legs!  And I'm quite certain, now that my NCS has shown healthy large nerve fibres, that the sharp pain in my 4th and 5th knuckles of each hand at night plus stiffness and occasional swelling -related to this pain in my elbows and is all SJS tendinitis.

When I was diagnosed with RA I had suffered for 9 months with what was classed as "polyarthritis unspecified". This was much more severe than my present pain and did eventually settle in both wrists and my knuckles and PIP joints as synovitis with pain -hence the RA diagnosis. It is now quite similar but everywhere and not as scream worthy.

I was referred to a physiotherapist at the time and she told me that it was almost all tenosynovitis - even one of my knuckles. This all makes absolute sense now I know that I have SJS. I never felt right about RA. I came to know the look of RA hands and it wasn't mine.

As the rheum chap said the other day, RA synovitis is invariably erosive and usually targets the hands and feet first, so this latest prolonged flare pain and stiffness should have shown up by now as at least a bit of RA erosion on x-rays - where I have none at all. He said that bilateral, non erosive joint swelling is a common feature of primary SJS. The reason the primary part is important is because the bilateral pain is non erosive with SJS whereas if RA is present then it will be the SJS that is erosive and this is what they will aim to treat aggressively to prevent further erosion. My hands were x-rayed again on Monday just to rule out RA erosion - but a year ago they were found to be "pristine" so I'm fairly sure they will be again.

Very interesting to have your explanation of the tendinitis and connective tissue damage from dryness and how it then causes OA. I do have plenty of OA but had thought this was simply due to my age (53) and post menopausal status plus wear and tear from carrying three large babies with back to back deliveries. Your account of this as SJS makes complete sense to me though - and this is why I feel that primary Sjogrens should be treated at source in the way that the other connective tissue diseases are.

[MAT51]

So I do grasp all this but what I haven't been able to understand  is why rheunstlogisfs aren't equally urgent about trying to prevent SJS from damaging our mouths, eyes and particularly our peripheral and autonomic nervous systems? On all the SFN literature it explains that nerves can't be regenerated so, just as with RA, there is a window of opportunity to try to prevent this irreversible damage to our tiny nerve fibres by addressing the cause of the SFN. If it's alcoholism or diabetes then these need addressing so why not Sjogrens SNf too? 

But all most people with SJS SFN are offered are antidepressants and anticonvulscants. And what this helpline person explained is that SJS is an inflammatory disease so the inflammatory process needs dampening at source. She felt that Rituximab would target mine more effectively without dampening down the entire immune system as Cellcept will. Pretty much as you are saying too. And with my terrible track record for drug intolerance she thought Rituximab might be much better for me.

Anyway it's the Mycophenolate Mofetil (brand name Myfenax) that has been chosen by my rheumatology team now and my former GP has agreed to monitor my bloods weekly for it from Monday while I'm back here for four months  -  so I'm all set to go with it.

Fingers crossed it helps!

[cccourt1942]

Mat:
     Anita's last response to you (and the thread as  a whole) is best for you.  First and foremost due to the fact you are the same age. 
     My comment to all of this is the question is quite broad and causes can be attributed to other conditions OR (my choice) normal wear and tear on a body, due to aging.
     I say this as I was about 50 when a physician suggested fibromyalgia.  After embracing a name, a dx, I was quick to learn it was the dx du jour...and no real treatment thus no cure.  Suggestions for managing included all that I did.  Whatever was wrong with me was keeping me tired and uncomfortable (it was a LONG time before I admitted to pain.)
     What I did at that time was take inventory of physical accidents resulting in breaks, ligament tears, sprains, etc.  Quite a few. In fact, many and multiples of both ankles.  At that time I realized I had to live with old injuries.  This is one of a # of reasons I lasted so long without complaining to ONE doctor about all my symptoms which were, indeed, Sjogren's.
      And here are points which I would like to remind all of you: Unless you are 35 or under, you are aging.  Unless you have lived in a bubble, you have injured your body. (Your body heals, but that injury is a blow to that part!) Unless you have never been ill or injured, you have consulted a physician.  Unless you have never had a headache or a joint pain, you have taken an aspirin and wondered why this happens.  The body is a miraculous machine.  It repairs itself beautifully---at times with or without medical intervention.
      The thing is (w' reference to above) NONE of us have had the same injuries, the same aches, the same treatments, etc.  Each is different in more ways than just genetics.  We cannot make blanket statements regarding "what" symptoms/conditions are for Sjogren's as  we don't know what is unique to us...and/or what we've read about.  Medical studies put that info together.  We can't.  THIS is the main reason most medical people break down symptoms to mouth and eyes for SjS.  Now..this is just about me and events in my life:  both ankles broken twice, both ankles ligament tears (multiple), one wrist break, one back surgery (blvd to have been caused in a childhood accident) two discs fused in neck, minor sprains during almost regular exercise and sports (mainly tennis as adult) (one of those ankle breaks), broken elbow (fall), and chronic low back pain due to NORMAL degenerative disc disease (I'm 74).  So many link the pain emanating from all that is related here to SjS.  I don't.  I was active...I was "all in"....I was not as athletic as I thought I was.    But NOW....the rheumatologist looks at ONE finger which is "deformed" and the "fatty pads"  (tissue) called the patellar, aches are a result of age related osteoarthritis. Xrays of hands and knees show the arthritis.  Rheumy names which type (she thinks).  Makes sense to me.  Actually, she says the finger deformity is likely a result of psoriatic arthritis.  There is no test for PA.  If you have psoriasis, and you have advanced to osteo then it is considered psoriatic arthritis.  And therein is MY bingo.  The early aches, the generalized pains, etc:  I dismissed fibromyalgia decades ago, didn't know about sjogren's, but did know of psoriasis.  But no one ever mentioned psor arthritis. 
      As all of you know, psoriasis is an autoimmune disease as well.  Differentiation or assignment to one or more AIs is not important to me.  Make me comfortable.  Let me go back to sleep after getting up three times (minimum) each night to pee, and give me strength to do a minimum of exercises each day, and I am happy...and feel better.
      Just as life is a journey-So is Sjogren's!  Just as my life is MY journey, MY sjogren's is MINE and your sjogren's is yours. 
      This is not to say I don't love the hints, information, and stories on this forum.  I treasure them all.  So many are thought provoking and soothing as well.
      Again:  Anita's post:  excellent.
Sjoldier c3

[MAT51]

Thanks for adding your point of view Sjodier C3. I obviously entirely accept that the ageing process means we are all going to deteriorate to a greater or lesser extent. Add genes and traumatic life events into the equation and of course each of us will have our own unique health journeys. I don't think Anita or I were being prescriptive of what Sjogrens may or may not account for. On many levels my own health has actually superficially improved as I've aged. I was a very poorly kid covered in severe eczema, suffering total alopecia (I do believe that sjogrens and hashimoto's began early for me following a very traumatic infancy) so my expectations of good health have not been very high compared to many others I've known.

Also the history that you describe is very musculoskeletal compared to mine. I've never broken anything, never been diagnosed with Fibromyalgia and my arthritis doesn't even crop up in my list of diagnosed diseases because it is just viewed as wear and tear and is not causing my pain or any of my other symptoms I'm assured. My autoimmunity has never really been questioned because my symptoms have been matched by some clear signs. Having tendinitis everywhere is not related to my age - it is part of a systemic disease I'm sure, although hormonal changes and sudden bereavement may have triggered this aspect of a pre-existing autoimmunity.

But I do think that for some of us, Sjogrens manifests in ways that aren't much acknowledged by wider society including medical professionals - and the tendency to blame the ageing process when we are still only in our early 50s, is to accept a poorer quality of life too readily I feel. Most health professionals allow for ageing,wear and tear etc when dealing with patients with rheumatic diseases anyhow.

So I think it helps us to make hard decisions about whether to risk taking powerful,targeted medications, if we know which symptoms can be primarily attributed to ageing or hormones or stress and which are broadly attributable to autoimmunity. I very much agree with someone who posted on this thread or by PM - saying that having Sjogrens will exacerbate or accelerate the ageing process or other pre-existing conditions such as thyroid disease or IBS or allergies for many of us. This makes so much sense if you consider how dry our bodies are compared to those without autoimmunity. This dryness hasn't just cropped up for me as I age, because I was born dry!

[quietdynamics]

Some information for readers.

Electromyography and nerve conduction studies are done to eliminate involvement of motor and large sensory nerve fibers.
Skin biopsies are used to confirm loss of cutaneous nerve innervation.
http://www.hopkinsmedicine.org/neurology_neurosurgery/centers_clinics/peripheral_nerve/conditions/small_fiber_sensory_neuropathy.html
https://www.neuropathyjournal.org/small-fiber-neuropathy/

"...primary Sjogrens is a rare disease and neurological manifestations are even rarer."
One of the Drs. I see is the Chief of Rheum and she laments the fact that I am in the small pop who presented with neurological manifestations first. Much to the confusion of original PC Dr, and thus original opinion of MS.
So given the small number, I really can understand that a Neurologist working with stroke, trauma and more familiar medical issues within their field, then researching SJS would not likely be up on some of the studies of Drs. dedicated to Sjogrens specifically.

"As this helpline person said, it's a rheumatic disease not a neurological disease ..."
While Sjogrens is a Rheumatic disease, for certain sub groups Neuro symptoms/conditions present and meds in the realm of neuro help us.
Treatment of Pain in Small Fiber Neuropathy: There are several different classes of medications commonly used to treat neuropathic pain. These include antidepressants, anticonvulsants, opioids, and topical treatments. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3086960/

Other conditions associated with acquired small fiber neuropathy include HIV [15, 16], inflammatory neuropathies (such as Guillain-Barre syndrome and chronic inflammatory demyelinating polyneuropathy) [17, 18], celiac disease [19, 20], hepatitis C [21], restless legs syndrome [22], complex regional pain syndrome type I [23], paraproteinemia [24], neurotoxic drug use [25–27], systemic lupus erythematosus [28], Sjogren's syndrome [29], abnormal thyroid function [2•], amyloidosis, and paraneoplastic syndromes [30, 31]. This list is not comprehensive and there are many case reports describing small fiber neuropathies in other diseases.

The wide spectrum of clinical manifestations in Sjögren's syndrome-associated neuropathy  http://brain.oxfordjournals.org/content/128/11/2518

[MAT51]

Thanks for this Quietdynamics. I do appreciate and grasp what you are saying in theory but I'm still very confused about how much of this applies to me. I begin Cellcept/ Mycophenolate Mofetil on Monday and have been trying to work out what it might actually help me with if and when it starts to work.

My SFN has not flared up for a while now and I'm just left vaguely icy,  tingly and a bit numb in patches everywhere, including my face. I have disequilibrium that disappeared only when I was on oral steroids last year for six months. I suffer from most classic Sjogren's symptoms quite badly, including dry eyes and fatigue,  and these are getting worse where the SFN and disequillibrium appear to have plateaued.

I think the symptoms that I find most confusing now are the extreme and worsening tinnitus which started 3 or 4 months ago - and the weakness in my arms and legs - which bizarrely is at its worst when I'm resting so that I feel the need to rest my arms and knees on soft pillows and struggle to lift my bedding at night. My neuro tells me that this weakness  does not tarry with Sjogren's

Having had normal results from a skin biopsy 18 months ago and having just had entirely normal results from nerve conduction studies last week - I'm very keen to know what this feeling of fatigue in my arms and legs is about? Having been told by the rheumatologist that a tender point in my elbow is tendonitis i an wondering if the Rheumatoid aspects of my Sjogren's are returning and the neuro side is levelling out, although I do have some mild numbness now. I hope I'm doing the right thing starting MMF next week because I'm terribly drug intollerent and I keep wondering if my symptoms warrant another immunesuppressant or whether I have something else going on. If the tinnitus, limb weakness and disequillibrium all resolve then that would be brilliant - but I admit I feel like I may be guilty of self harming otherwise.

So I was really asking these two questions to try and establish whether my symptoms warrant a fifth DMARD/ 4th immunesuppressant or not? My Sjogren's started out imitating RA, with bilateral joint and tendon pain, so I'm inclined to pay more heed to rheumatology than to a neurologist who is very thorough but isn't as well informed about rheumatic diseases as she likes to think. Her area of expertise is in Parkinson's Disease not immune mediated neurological conditions.

What I'm saying is that my neurologist says the weakness does not go with Sjogren's and the rheum says that my tendinitis isn't Sjogren's related - and if the tinnitus isn't a Sjogren's symptom either then what exactly am I taking the Mycophenolate for?

[Dawnmist]

I found last year that the muscle fatigue/weakness that I was getting responded to the anti-inflammatories that I started taking for the tendinitis that was flaring at the time. The type of fatigue felt like it would take 2-3 times more effort from muscles to make normal movements. Walking would feel like I was trying to force my way through chest-high water, walking uphill was more like molasses or tar.

It would take 7-10 days on anti-inflammatories for the fatigue to settle, and it would return (along with the tendon pain) about 7-10 days after finishing the course of anti-inflammatories. It was how my muscles were affected by the constant low-level inflammation that Sjogrens was causing.

I don't know if this will apply to you, but given the tendon pain you are experiencing at the moment there is definitely at least some body-wide inflammation going on. Treating the tendon inflammation (if you can!) might also help treat your muscle weakness. I don't know if you are already on anti-inflammatories, or if you're unable to take any, but if not it was something I thought may be worth trying/testing.

[MAT51]

Thanks Dawnmist. Yes this is helpful but I can't take anti-inflammatories because of gastritis/ reflux. However I believe immunesuppresants are used to lessen our inflammation and I start Cellcept on Monday. If the widespread tendon pain and weakness is part of an inflammatory process, as I think it must be (my sed rate is usually very high) then I hope that this will help. The rheum suggested anti inflammatory gel but I'd have to rub it everywhere lol!

[jazzlover]

I can't take NSAIDS myself, so I take curcumin twice a day for pain and inflammation. If my stomach could handle it, I would take it 3 times a day.

[anita]

Keep in mind the Cellcept takes a while to work...and to take with food.   It can cause stomach upset.  many doctors start at a lower dose and work up to ease side-effects and help the body get used tot he drug.  How much have the prescribed?

[MAT51]

It's not Cellcept - it's Myfenax (Mycophenolate Mofetil) 500mg tablets. I'm to start at one a day increasing each week to reach a maintainance dose of 1000mg twice a day. Gosh that seems a lot of pills to have to swallow doesn't it?! They are film coated. It says with or without food but a friend who takes the same brand told me to take an hour after food, so not on an empty stomach. Have you heard of this brand Myfenax as I've noticed we in UK tend to call the drug by the generic name rather than the brand name i.e. hydroxichloraquine rather than Plaquenil?

[Linda196]

Cellcept and Myfortic are also brand names of Mycophenolate Mofetil

[quietdynamics]

Hello Mat51.. I was providing some information to readers in general from some of my experiences and research. This is where I learned the most about Sjogrens and what to question as "not normal" symptoms. In the middle of the spectrum, what Drs. are familiar with.

I first had reoccurring shin splint type pain in my early 20's ( I was not a runner).

As far as symptoms described in the articles/links I provided, I some I experienced around 2000:
-sensations of electric shocks sometimes when walking, legs would feel heavy like lead (had to buy only light weight shoes)
- overwhelming fatigue, bouncing off hallway walls in home.
- one day could not life left leg... so off to ER.. (1st exam for stroke)
- right arm fatigued and would drop. For more than year could not lift milk from fridge.. so lowered shelf and use other arm 
- visual halos driving @ night, then experienced stopping at red lights in car and not knowing where I was.
- Whole room tilted and darkened ... so different hospital ER visits 2011 and exam for stroke, been under care of Neurologist called ever since.

Neuro was seeing me every 3-4 months and med prescribed (as noted in literature for Neuropathy) is an anti-epilepsy/seizure.
This med helped also with the tingling sensations and the sensory intolerance to certain sounds (playing a radio near me was painful, feeling like unpleasant waves)
*For myself the Neuro also Rx a sleep med.. as without proper sleep I am wiped out and triggers a downward cascade.

With all of the above symptoms I did contact Dr. Birnbaum and they wanted to see me. I elected to be seen at closer SJS clinic and treatment protocal was changed to methotrexate (after and extended trial w/ prednisone) and theraputic doses of Vits. B and D3 (as both were deficient).

Presently I needed to stop Methotrexate for flu and pneumonia vaccines.. so my old/familiar symptoms of hip pain, some fatigue, burning of eyes, skin issues have returned. Walking is tiring and stairs are an issue, carrying things up and down not happening. So I can see how much this med helps (we are considering injections).
In fact my right foot went numb the other day and I fell ... and I needed to avoid the left knee recently broken. SJS Dr. assured me there are other options for treatment we can consider. I also found that with this med controlling what Dr. described as "unmanaged inflammtion for decades" the gastrointestinal issues (which also would leave me homebound) abated. I find I do not have the old problem I had for many years of going down stairs (I thought it was poor depth perception.) Although the tinnitus is not gone, it is lower (now if it goes higher, louder, I use it as a warning to back down and rest).

I see SJS/Dr. on the 8th and have some CNS/inflammation questions.

I realize you are sensitive to meds and you were not able to tolerate methotrexate, however my information may help another reader in weighing the pros and cons.

"I keep wondering if my symptoms warrant another immune suppressant or whether I have something else going on."
Yes, this is a question I have asked many times. Even when some of these 'bizarre' symptoms occur and I am just drained I have said to a Dr... "So which box of convenience are you going to put that in? Sjogrens or Fibromyalgia?"  I do temper that with "I know you wish you had a crystal ball". Truth is we are not in a controlled funded research study and the Drs often simply do not know. The good news is that medical tech is vastly improved (think of your parents at your age and what was available) and more and more information/data is available. 

I hope the Cellcept will remedy your symptoms and disease process.

[irish]

Just a quick note on the tendons and Sjogrens. Actually, tendon issues are very common in connective tissue disorders which is what Sjogrens, lupus, RA, Scleroderma are. I have had trouble with a lot of my tendons.

The Achilles tendon is a bugger and one has to be very careful as when this is flared it is very easy to rupture it. I would have to take several hours every morning to ease into walking because of the tightness in the tendons when I got up in the morning. Back of the heel pain usually were good indicators for me.

I have had both wrists surgically repaired for carpel tunnel and I have had treatment for other inflamed tendons in my feet that have almost incapacitated me. Then there was the day I went to pull a weed and ruptured the tendon in my little finger. It is not much good for anything anymore but must exercise it and massage it to help keep the finger next to it moving. My ortho doctor told me later that repair of that finger would have required 2 surgeries. That is why I didn't go to the doctor. My finger is so thin anyway and my tendons feel like they are almost hard. I can feel my tendons pulling in my hands at times and know if I don't take it easy I will rupture more of them. If I do that too many times I won't be able to feed myself and that would ruin my day.lol Irish

PS One of my sons with Hashimotos encephalopathy jumped out of bed about 15 years ago when the smoke detector went off at 3 AM. By the time his foot had hit the floor he knew he had ruptured his Achilles tendon. Surgery and missed 6 months of work. Thanks to autoimmune disease.

[quietdynamics]

Here is some information

Sjogrens starts mid-way down
2. Specific Autoimmune-Disease-Related SN
2.1. Sjögren's Syndrome
Sensory Neuronopathy and Autoimmune Diseases
https://www.hindawi.com/journals/ad/2012/873587/