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

[MAT51]

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?

[Carolina]

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

[Joe S.]

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.

[MAT51]

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.

[Carolina]

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

[Judie P]

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.

[SjoGirl]

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).

[MAT51]

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!

[MAT51]

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

[jazzlover]

.
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.

[anita]

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.

[MAT51]

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?

[Dawnmist]

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.

[MAT51]

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.

[anita]

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.