I'm really muddled about a). My rheumatologist told me that primary Sjogrens is a rare disease and neurological manifestations are even rarer. And yet when I read up it's described as one of the most common Autoimmune Disease and this seems to include the primary form. Also my neurologist, from the same Scottish hospital said that neurological manifestations like mine are a common feature of Sjogrens. So who is right?
Regarding b) I asked the rheumy about the longstanding pain in my elbows -stupidly forgot to mention that I have had same pain in ankles and knees for years too. He said that it is tendon related from tennis elbow or repetitive strain. I asked if it was Sjogrens related but he said no it wasn't and just use antiinflammatory gel. Now I'm absolutely certain that he's wrong because when I was misdiagnosed with RA five years ago today, the synovitis was mostly in my tendons. Only a few knuckle bad finger joints were affected. As I have primary Sjogrens and tendonitis in all four limbs, sure the two must be connected?!
If so could all the weakness and tingle around my limbs also be due be tendonitis -seeing as my nerve conduction studies and EMG were all normal last week? And what happens if this tendonitis is left to just carry on and on untreated by immunesuppressants or steroids -will it cause permanent damage to my tendons as well as the damage already caused by my SFN?
1. SS can occur at all ages, but it affects primarily females during the fourth and fifth decades of life. SS frequency appears to increase with age, with a prevalence of about 3% in people above an age of 50?yrs [4]. The female:male ratio is about 9:1.
http://rheumatology.oxfordjournals.org/content/45/suppl_3/iii3.full
2. Sjögren's ("SHOW-grins") is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies and lymphomas.
https://www.sjogrens.org/home/about-sjogrens
Dear MAT51, your Rheumatologist is very ignorant. Stick with the neurologist.
BTW: Diagnosing Sjogren's by very specific criteria allows for statistical evaluations of prevalence. You must count only 'apples', so you have to define them carefully.
However, most of us know that Immune Disorders have lots of inconsistent variables and mysterious complications, and that using rigid criteria excludes many who are truly suffering.
Sjogen's can attack any organ/system, and most of us here have issues with tendonitis and other problems of muscles, ligaments, etc.
The weakness and tingling could be the start of peripheral neuropathy. Surely you should consider immunosuppressants with this list of symptoms? What does your neurologist say?
Hugs and best wishes, Elaine
The first thing that one of my rheumys did was to send me to a neuro. While she did not tell me what she thought I had, the Neuro did. After his evaluation, he suggested I use a cane the rest of my life for balance issues.
I had directly asked her what I had and she refused to tell me so I found a new rheumy.
Thanks Carolina and Joe. Sorry I didn't really ask my question very coherently. The rheum was just a senior registrar (don't know how this translates into US equivalent) but he is knowledgeable -it's just that we are talking about a much smaller population here in Scotland compared to England or the US. I think Sjogrens is probably the least understood or researched rheumatic disease -and I say this having spent five years being treated aggressively for RA -which turns out to have been misdiagnosed. I tried Sulfasalazine (anaphylaxis), injectable Methotrexate for two years (GI problems), Plaquenil (a slow form of anaphylaxis over 18 months) and Imuran which gave me pancreatitis last year. So the rheum is actually being quite brave to now let me try Cellcept -having first offered nd Rituximab. I felt unready for this so start Cellcept next week hopefully.
I have been diagnosed with non length dependant Small Fibre Neuropathy by two neurologists despite no skin biopsy confirmation. I think it's plattaeaued out now as I'm mostly just numb with some disequillbrium that I use a cane for now to keep my balance and not end up looking like an idiotic drunk when I am trying to navigate patterned flooring or neon lighting! I think this I have a fairly classic Sjogrens that has affected me for a few decades. I'm 53 now so pretty much the model Sjogie! Hoping the Cellcept works but if not I think I will go for Rituximab as I'm lucky to have this option. Many with Sjogrens don't in the UK.
Dear MAT51,
You are fortunate to have such good treatment, with the new biologicals.
And several to choose from!
In a small population, Sjogren's wouldn't show up as frequently, in total numbers, but I rather imagine the statistical incidence remains the same.
Have you tried educating your doctors with medical research documents? I find that works the best. But of course, the doctor has to be open to new ideas to begin with.
Hugs, Elaine
This may not apply here, but my rheumy asked me a bunch of questions when I talked about my constipation problems, sinus problems, pains, etc. She asked me if I ever had constipation or sinus problems as a child. I did. She told me what my Primary Sjogren's has done is enhanced all of it, not started it. I was never regular as a child. Now SJS has enhanced the problem. I always had sinus problems as a child, now the SJS has caused more dryness and bleeding.
Perhaps you always had an underlying tendon problem and SJS is now enhancing it. For me, and I might be the only one, looking at Primary SJS in that manner helps me.
Hello, Here are my responses, just mine:
1. SJS is the second most prevalent AI after RA and it is estimated that about 4 M people have SjS in the U.S. alone. So yes, it is prevalent, but while 4 million is a big number it's not astronomical. Lots of good books on the topic such as a Body Out of Balance.
2. It is possible and even likely to have more than one disease or issue when you have SjS. I have mild to moderate osteoarthritis, degenerative disc disease, and now sensory and motor neuropathy in addition to SjS. I believe that I might also have autonomic neuropathy because I don't sweat anymore.
It took years of testing and multiple docs, but I do now believe that more of my "joint" issue are from osteroarthritis and I've been told biologics won't help. I will say that I am a believer that the osteoarthritis and SjS are connected because so many of us have both. Given that the arthritis that I have is the result of fluid loss in joints it seems to me to stand to reason that it's the Sjogrens sapping the fluid (it is certainly impacting my saliva production, so why might it not sap fluid from my joints.
My neuropathy is, I think based on what my neurologist tells me, is from my discs impinging on nerves, but I've pushed my neurologist on this point and he just gives me medical speak for my diagnosis. I have asked will this progress (no one will answer), what can I do to address it (beyond PT, good posture, and meds not much), etc. Two of my docs, neurologist and rheumatologist, basically like to say that my issues are the result of getting older. I am getting older, but I'm in my late 50s not 70 so I'm not liking that comment. I have asked if what is happening is prevalent at MY AGE, no one will respond.
Wish I could be more helpful, but as you can see I'm not getting very far and I have what I believe to be the best docs I can find (and I've been to many including Hopkins).
Quote from: Judie P on December 01, 2016, 12:25:41 PM
This may not apply here, but my rheumy asked me a bunch of questions when I talked about my constipation problems, sinus problems, pains, etc. She asked me if I ever had constipation or sinus problems as a child. I did. She told me what my Primary Sjogren's has done is enhanced all of it, not started it. I was never regular as a child. Now SJS has enhanced the problem. I always had sinus problems as a child, now the SJS has caused more dryness and bleeding.
Perhaps you always had an underlying tendon problem and SJS is now enhancing it. For me, and I might be the only one, looking at Primary SJS in that manner helps me.
I really appreciate your way of seeing things Julie P. I use similar thoughts to try and self manage because, if a theory makes sense to me, I'm more likely to remember and accept it.
For instance constipation is new to this adult stage of my life but it was a severe problem that once even hospitalised me as a child. It makes sense that Sjogren's would enhance this as we can't retain moisture well so, like a house that has subsidence, the cracks reappear, bigger and stronger than they were in the early stages of the house's life. Visualising my problems in this way helps me not to panic too much when new symptoms arise.
However I didn't really have painful joints, muscles or tendons as a kind though. My pain was all in my guts and skin (severe eczema and alopecia). Now it's moved underneath the skin into my small nerve fibres and tendons I believe. I didn't have sinus problems but always had dryness in my throat and often tickly cough ever since I had whooping cough as a kid. So yes you are spot on in my book!
Quote from: SjoGirl on December 01, 2016, 03:00:10 PM
Hello, Here are my responses, just mine:
1. SJS is the second most prevalent AI after RA and it is estimated that about 4 M people have SjS in the U.S. alone. So yes, it is prevalent, but while 4 million is a big number it's not astronomical. Lots of good books on the topic such as a Body Out of Balance.
2. It is possible and even likely to have more than one disease or issue when you have SjS. I have mild to moderate osteoarthritis, degenerative disc disease, and now sensory and motor neuropathy in addition to SjS. I believe that I might also have autonomic neuropathy because I don't sweat anymore.
It took years of testing and multiple docs, but I do now believe that more of my "joint" issue are from osteroarthritis and I've been told biologics won't help. I will say that I am a believer that the osteoarthritis and SjS are connected because so many of us have both. Given that the arthritis that I have is the result of fluid loss in joints it seems to me to stand to reason that it's the Sjogrens sapping the fluid (it is certainly impacting my saliva production, so why might it not sap fluid from my joints.
My neuropathy is, I think based on what my neurologist tells me, is from my discs impinging on nerves, but I've pushed my neurologist on this point and he just gives me medical speak for my diagnosis. I have asked will this progress (no one will answer), what can I do to address it (beyond PT, good posture, and meds not much), etc. Two of my docs, neurologist and rheumatologist, basically like to say that my issues are the result of getting older. I am getting older, but I'm in my late 50s not 70 so I'm not liking that comment. I have asked if what is happening is prevalent at MY AGE, no one will respond.
Wish I could be more helpful, but as you can see I'm not getting very far and I have what I believe to be the best docs I can find (and I've been to many including Hopkins).
Thanks. I thought it was the third most prevalent AI disease after RA and Lupus? but perhaps this only applies to primary Sjogren's. The statistical information given out on various sites seems to vary enormously and his is why I asked here. One UK NHS page says it affects half a million in the U.K. - which is nothing out of a population of 65 million or so to me. But I'm numerically challenged to use need to know from others if it's relatively rare or actually rare as the rheumy said it was.
I've also never quite understood why Sjogren's is deemed to be a less serious disease than the others by many primary doctors and rheumatologists - thankfully not mine so far. I find it so easy to grasp why it has serious implications for many of us because, if a person can't hold onto moisture, then we are in a permanent state of drought - and we all know that human beings are made up of water predominantly, so not having enough moisture is obviously going to have pretty serious consequences.
I must go to sleep now as it's night time here SjoGirl but I think this discussion has helped me to understand and feel less guilty about agreeing to try another immunesuppressant. I need to get back on top of the high levels of inflammation that systemic lack of moisture is causing me before it impacts on my organs. Take care. Zzzzzz :o
.
SjoGirl said,
"It took years of testing and multiple docs, but I do now believe that more of my "joint" issue are from osteroarthritis and I've been told biologics won't help."
--
I would think this is true.
I do know that I have tendon pain .. but not sure of the cause. SJS is probably the most likely reason.
I think you are referring to the article I provided in your other thread. It stated that Sjogren's is the most common autoimmune disorder. it also mentioned how the UK had higher rates (I'm sure they meant proportionally).
It is more common than people (and even some doctors) think. I think you are right that your doctor is only considering your immediate area and not as a whole. The only difference between Primary Sjogren's and Secondary Sjogren's is whether you have another AI disease present. The incident or numbers of patients with primary and secondary is not looked at as different disease processes, so only "Sjogren's" by itself is considered when compared to other AI diseases in terms of numbers.
But I think your neuro is wrong...Sjogren's may be common, but neuro manifestations from it is not nearly as common...according to Dr. Birnbaum at Johns Hopkins (and this is his specialty/research field). Although you read of many here with neuro complications (or on NeuroTalk), but there is a vast number of Sjogren's patients without neuro involvement that aren't 'posting' on forums. I don't know if it would be right to say it is rare, though. I will ask Birnbaum next time I see him...as now I am curious from your question.
Thanks Anita. After posting this I had a long chat with a helpline woman from our UK Sjogrens charity. We discussed my symptoms and she feels that my SFN has now reached a plateau with the burning pain mostly gone apart from the odd flare up. However the weakness and this dull ache and warmth is everywhere and she agreed that this sounds more tendon related and would explain the reason why nothing showed up on my EMG and NCS at all to explain the weakness affecting my limbs so much. I know SFN wouldn't show up either but I think she's right to say that mine has done it's dastardly thing now and isn't currently progressing. The bilateral pain I am experiencing again goes back to my RA tendencies of five years ago she felt, which even when diagnosed,affected my tendons more than my joints.
Regarding other responses here - I agree Sjogrens numbers affect many more than we see on this site and most commonly does affect mainly eyes and mouth/ sicca for many. I also agree that having Sjogrens will speed up the rate of wear and tear/Osteoarthritis. It's bound to because of the overall dryness on musculoskeletal frame- and the same applies to all types of inflammatory arthritis including RA - which certainly brings on secondary osteoarthritis too.
I've asked over and over if my confirmed OA in spine,hips, neck, hands and knees could be the cause of all my most prevalent nerve and tendon symptoms - but everyone says no - my more serious issues are apparently systemic and inflammatory in nature and this is why immunesuppression has always helped my symptoms in the past and why Rituximab might be the ultimate treatment for me if Cellcept does nothing or I can't tolerate it.
I feel much better for having at last worked out that tendinitis is actually the biggest way that SJS manifests with me and the SFN with autonomic issues go hand in hand with this. As this helpline person said, it's a rheumatic disease not a neurological disease and it needs antirheumatic drugs to to tackle it at source. The neuro is failing to grasp this when she describes these drugs as sinister and advises me and my rheumatologist to avoid them. Maybe if more of us with SJS were offered these antirheumatic drugs earlier on, then Sjogrens would be on a more level playing field with the other connective tissue diseases in terms of effective disease management?
For your second question, Sjogren's is known as an inflammatory disease. Add inflammation to fatigued muscles and tendons, and you get seemingly "random" episodes of tendinitis, bursitis, etc. So while it may not be a symptom that everyone with Sjogren's will get, for some people it absolutely will be a manifestation of the disease.
Thanks Dawnmist. Yes I am certain that I'm right that the escalating pain and weakness in all of my limbs is due to system-wide tendonitis and your response confirms this. How could that rheumatologist say this is just tennis elbow when I have it everywhere?! But then I think perhaps that I failed to explain this properly to him so he assumed it was just in one arm. I have a bad tendency to minimise pain to doctors because I always think they might say it's a symptom of neurosis or anxiety as my late mum always did.
I'm also fairly sure that my pain sensors have been skewed by the very diffuse SFN I suffered badly from for a few years - so my confirmed small fibre nerve damage means I don't feel pain the way I used to when the RA-like symptoms first affected me so badly five years ago. It's like being wrapped in a tight bandage with cotton wool and a muted pain everywhere just now, mainly when I'm resting. However once I'm moving about it improves greatly and then I'm just mildly dizzy and numb.
I don't sweat, suffer palpitations and disequillibrium and have irregular breathing, swallowing issues, sexual dysfunction and constipation - which seem to bother me more than pain. But all of these I find impossible to discuss with my doctors so I'm lucky that they seem to take my Sjogren's seriously despite not knowing how it actually affects me on a daily basis. I'm sure lots of us here have similar issues so it's good to have a place we can discuss them and learn more.
I'm not sure I understand exactly what you are saying...are you implying that she feels it has plateaued and stopped progressing (for good)? All those with Sjogren's will have flares and then stabilization (so to speak)...before the next flare occurs. So you do know that it's dastardly thing isn't done, right?
As for tendinitis, Sjogren's reeks havoc on the tendons and joints...from lack of moisture. This speeds up occurrence of OA, since the joint have less fluid and the bones wear on each other more. Not to mention the inflammatory process itself causing OA and tendinitis.
The nerve problems do not come OA...Sjogren's causes damage to the actual ganglia in the spine and elsewhere. This includes the autonomic ganglia in the spine causing your (likely) dysautonomia.
Rituximab is not like other immunosuppressants, and not really referred to as one. It attacks and removes excess B cells. It does not wipe out your immune system in general like other immunosuppressors. Therefore, you may not have the same experience as you had with general immune suppressors. Cellcept, on the other hand IS an immune suppressor. Here's a link to Wiki page for Rituximab/Rituxan.
https://en.wikipedia.org/wiki/Rituximab
Hope this helps understand Rituxan better and how it works. It is not in the typical immune suppressor class....it's a B Cell depleting agent.
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.
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!
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
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!
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
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?
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.
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!
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.
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?
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?
Cellcept and Myfortic are also brand names of Mycophenolate Mofetil
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.
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.
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/
Quote from: MAT51 on December 04, 2016, 01:23:30 AM
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?
It's still Cellcept and you're taking the same step-up dosing I had. Just give it time to work and watch for stomach upset (mine were coated too). I didn't have much problem (I think it was the way he slowly increased the dose and taking it with food).
Not sure where you've read that those with SFN cannot regenerate nerves...IVIG has PROVEN studies (by repeat skin biopsies showing increased nerve fibers) of increasing BOTH nerve density and morphology! There is not as good of results with some autonomic nerve damage, but SFN definitely improves....especially in regards to sensory issues/pain from low nerve density (typical SFN finding). I get improvement with my IVIG and I'm way outside the 'window'. It may not be great improvement, but still noticeable difference starting after my infusion until the last few days before the next infusion.
I just ruptured another tendon in my wrist, and my other wrist hurts now too..tore tendons in both my ankles. Very weak. Docs said the combo of my diseases, Hormone changes from induced menopause, age, steroids can all cause tendons to get extremely weak. Im very upset. But, what can be done? I know hormones, play a huge role in all of this. I wish I could get mine straight. I cant tolerate anything in my body.
Gursie
Back to your a) query:
I believe SjS shows up in about 1 in 70 individuals. Seems high though.
c3