Please can someone answer this question once and for all:
What is the difference between RA and the joint pain we get with SJS? ???
Is our joint pain essentially RA or in some other category of arthritis?
No doctor will give me a straight answer on this one. ::)
Rheumatoid Arthritis is an inflammatory arthritis that causes joint erosions and deformity.
Sjogren's Arthritis is an inflammatory arthritis but it does not cause joint erosions.
The joint pain we get can be either of these two forms of arthritis or we could have Osteoarthritis.
If we have Psoriasis, we may get Psoriatic Arthritis.
In addition, the constantly ramped up immune system (and the subsequent cascade of cytokines) can cause aches and pains in a similar fashion to the aches and pains a person gets with an infection or the flu.
I tried to find some of the articles I have read concerning the various forms of arthritis, but I cannot seem to locate them. If I find them, I will post the links.
Thanks Jasper,
How would I know which type of arthritis I have at the stages where erosions/deformity might not be obvious?
What is the treatment for either arthritic diagnosis?
I also heard that lack of joint lubrication in SJS may be the culprit where pain is concerened. Anything to that in your opinion?
Sharon here is one study
Disturbance of cytokine networks in Sjögren's syndrome, Pierre Youinou author and Jacques-Olivier Pers
Arthritis Research & Therapy201113:227
DOI: 10.1186/ar3348© BioMed Central Ltd 2011
Published: 6 July 2011
https://arthritis-research.biomedcentral.com/articles/10.1186/ar3348
"This article is part of a series on Sjögren's syndrome, edited by Thomas Dörner, which can be found online at" http://www.arthritis-research.com/series/Sjogrens
Information on RA tests: http://www.mayoclinic.org/diseases-conditions/rheumatoid-arthritis/diagnosis-treatment/diagnosis/dxc-20197396
I have SJS and Fibro and never fully experienced the symptom/pain difference until I was on an extended trial with Prednisone.
Hip pain and wrist pain, shoulder, ankle were resolved during the trial. Then I was left with the unique Fibro pain (which requires other medication/treatment protocol). After the trial Methotrexate was begun (it is used for RA as well).
So for me it was a matter of tests, monitoring via bloodwork, and a trial, then a change in treatment protocol for Sjogrens.
Thank you quietdynamics,
How long on the Prednisone and on what dosage before your SJS pain subsided?
hi Sharon.
Of course there are specific blood tests to dx RA but as you know you can have
it without positive results. My RA was dx by symptoms and the xrays of my feet,
especially my right foot. I have erosion. My wrists hurt terribly at times but no
damage is seen as of 2 years ago with the last xrays of them.
My feet wrists and fingers get red and warm...swell. My toes are going crooked.
I had to give up shoes with ties...buckles...etc. Anything enclosing my foot
is painful to wear/get on. I wear mostly flip flops and CROCS.....backless flat shoes.
I walk with a gimpy gait......go down steps one at a time...like a toddler on bad days.
I am interested to know if anyone out there has only sjogrens and has this amount
of difficulties.
My rheumy also told me that RA destroys joint but sjogrens does not but pain is pain.
I have several friends and acquaintance that have had to have knee, hip and even
elbow replacements with RA. Osteoarthritis is caused by wear and tear and injury
to the joint.
shelly
Thanks Shelly,
My pain is relatively recent so I don't think I'd have advanced symptoms such as swelling at this point. My bloodwork is negative for RA and the xrays were "inconclusive".
However the pain is consistent with all I've read on RA and has been getting worse.
What meds help you with your RA?
Joint Pain and Sjögren's Syndrome
Alan N. Baer, MD, FACP
Associate Professor of Medicine
Division of Rheumatology
Johns Hopkins University School of Medicine
Director, Jerome Greene Sjogren's Syndrome Clinic
-Inflammatory arthritis can lead to permanent joint damage and degenerative joint processes can trigger inflammation.
The term "arthralgia" refers to joint pain, irrespective of its cause. Importantly, patients may have joint pain, but lack signs of arthritis when examined by a physician. As will be described below, this is often true for primary SS patients.
-Joint pain is one of the most common symptoms of SS. Multiple joints are painful, usually episodically
with periods of joint pain, known as "flares", followed by periods of little or no joint pain. Arthritis
and/or arthralgia may develop before the onset of dryness of the eyes and/or mouth in SS patients and
thus be the first manifestation of Sjögren's syndrome. The arthritis of SS is often associated with other
features of SS not related to the salivary or tear glands, such as blood vessel inflammation (vasculitis),
nerve damage (neuropathy), Raynaud's phenomenon, and kidney disease.
-The arthritis of primary SS is mildly inflammatory and a manifestation of the systemic autoimmune
disease. The mechanisms responsible for this arthritis may include systemic factors which affect the
joint tissue secondarily, such as immune complexes (which can induce inflammation in small vessels) or
inflammatory mediators (such as cytokines, which induce physiologic changes in various tissues).
Alternatively, the immune reaction may be directed specifically at a structural component of the joint,
thereby inciting an inflammatory response.
The joint manifestations of Sjögren's syndrome are listed in the Table. An inflammatory arthritis,
defined by the presence of joint tenderness and swelling, usually affects many joints, particularly those
of the fingers, the wrists and the ankles. The shoulders, hips and knees may also be painful. The arthritis
usually "comes and goes" and affects the same joints in the right and left limbs in a "symmetric" fashion.
Joint x-rays are usually normal.
-
https://www.hopkinssjogrens.org/wp-content/uploads/2009/11/Joint-pain-in-SS.pdf 8pages
Hi Sharon,
Much to my dismay I found out last Friday I have ostheoarthritis. It showed up on a foot scan. I was under the impression my pain was caused by a hallux valgus (foot bump) but I was wrong. As I'm opposed to Embrell or methotrexate I searched for an alternative. The claim that glucosamine sulfate might abate the pain seems to hold true for me. Last couple of nights hip, knee and foot pain did not wake me up.
Good luck, hope you find relief soon 😊
eye2dry,
I have some of the same pain and changes that you have. My Podiatrist said that the changes in my feet and toes are consistent with RA. I have also had changes in my fingers (both toes & fingers)
leaning/crooked. I have a great deal of pain. I have a hard time wearing any other shoes that will not accommodate my inserts & even then, I still have a lot of pain.
SjoDry
quietdynamics- Thank you, that was very helpful!
Maria- the glucosamine sulfate sounds interesting..what brand did you get?
Hi Sharon,
The cheapest I could get: whole jar for only 3,99 Euro ;D
So glad it's working for you!
What dosage do you take?
Here is a link to info about RA: http://www.arthritis.org/about-arthritis/types/rheumatoid-arthritis/
and Sjogrens http://www.arthritis.org/about-arthritis/types/sjogrens-syndrome/
from the Arthritis Foundation.
Between blood work and looking at my xrays and MRIs my rheumatologist has been able to tell me that my joint issues are actually due to osteoarthritis versus Sjogrens or RA. I don't know how he knows, but will ask when I next see him.
Quote from: Sharon on November 08, 2016, 08:31:16 AM
Thank you quietdynamics,
How long on the Prednisone and on what dosage before your SJS pain subsided?
The prednisone was a trial when I first went to a Sjogrens Clinic ( where I am being treated).
Plaquinel alone was not enough to manage the disease/inflammation state so Methotrexate was added.
Methotrexate is also used for RA.
Fibromyalsia is treated with other medication combo.
Thanks SjoGirl and quietdynamics.
UPDATE: A rheumatologist just checked me and concluded that my joint pains are Sjogren's related pains and not RA. His explanation is that with RA you get visual swelling of the joints which he did not detect with me. Also the fact that my pains are sometimes experienced as sharp shooting pains led him to decide it was the SJS.
Does this sound right to anyone? ???
My experience so far with rheumys has not been positive so I'm naturally skeptical of what they tell me.
Hi Sharon,
On which basis did he draw this conclusion? Sounds pretty similar to what my rheumy told me, until orthopedic dr drew another conclusion on the basis of a bone scan... On the outside I have no visible swelling either, but the X-ray shows osteoarthritis.
By the way the dose of glucosamine I took was 1200 mg. However had to switch to vegetarian brand due to itching (which medication will NOT give me any side effects?!).
Good luck!
Hi Maria,
Thanks, I also get itching from some supplements (among other things).
The rheumy examined me physically, pressed areas and moved joints in circles
and asked me questions about the pain.
My X-rays were inconclusive, but my pains have gotten worse since I had them done.
I also wonder if it may actually be osteoarthristis.
Well it may very well be. Maybe osteoarthritis is only visible on an X-Ray when it's progressed to a certain level.
Probably wouldn't harm you to try the glucosamine. Since switching to the vegetarian brand I had no more itching (knocks on wood), but then again the dosage is half of the other one. Good news is the pain is noticeably less during the day & night. ;D
Thanks for the advice Maria.
I think you may just be correct about osteoarthritis not showing up in X-rays
until it progresses enough.
Since I am seropositve for RA (anti-CCP) I get my joints checked yearly. I started with x-rays and then requested ultrasound because that can detect active inflammation sooner before bone damage occurs. See RA Warrior for lots of info on this. But don't get scared on her site that you must have RA because Sjs can certainly cause joint inflammation as well. Now I get a US joint scan yearly. I now have assurance that I don't have RA and that, if I get it, we will catch it early! That is peace of mind. Not all rheumys do this.
Good idea Nymph!
What confuses me is that the pain gets much worse when I use the joints.
I don't know if that fits the bill for "SJS pain"....
Voltaren cream helps some of the joint pain so there's definitely inflammation.
I was just about to ask this question having been diagnosed with RA and treated for a few years with Methotrexate injections and Plaquenil. I've also tried Sulfasalazine and Imuran - had severe intolerance issues with all finally. I've taken steroids many times too. Now I've been rediagnosed with primary Sjogrens and the RA has never really come back in the full blown manner it started in about six years ago.
My first rheumatologist decided that my RA was "non erosive". The second rheum said I didn't have RA or a connective tissue disease (disregarding that I was still on steroids when he tested my blood) and the third rheum says that my non erosive RA is actually part of my primary Sjogren's, diagnosed by +ANA and very positive lip biopsy result. This last rheum's explanation makes sense to me. I think it is triggered by the nervous system and brain registering the sicca dryness and then sending signals to the joints which in turn, overreact. A kind of faulty wiring I suppose?
Slowly but surely I'm getting much more pain and think it's mainly in my tendons, but some in my knuckles, elbows and knee joints too. I have confirmed Osteoarthritis in my lower back, hips and neck but although I'm told these are significantly progressed - they don't actually cause me much bother most of the time. The SS/RA pain felt like I'd fractured my wrists and fingers and toes and even my shoulders and knees. I read on this World Sjogrens site that 25% of those with RA have secondary SS but 50% of those with primary Sjogrens have secondary RA. They present the same in terms of bilateral pain but SS RA shows less swelling and is less erosive. I find that leather wrist splints really help me at night.
Quote from: Sharon on November 09, 2016, 01:49:03 PM
Thanks SjoGirl and quietdynamics.
UPDATE: A rheumatologist just checked me and concluded that my joint pains are Sjogren's related pains and not RA. His explanation is that with RA you get visual swelling of the joints which he did not detect with me. Also the fact that my pains are sometimes experienced as sharp shooting pains led him to decide it was the SJS.
Does this sound right to anyone? ???
My experience so far with rheumys has not been positive so I'm naturally skeptical of what they tell me.
I too have had very mixed experiences of rheumies but I think yours is probably spot on. Here's a quote from Steven Mandel on Sjogrens World: "Twenty-five per cent of patients with rheumatoid arthritis have Sjogren's syndrome; 50% of patients with Sjogren's have rheumatoid arthritis. There can be associations with thyroiditis and myasthenia gravis."
I believe this non erosive RA is often secondary to those with primary Sjogrens. Certainly this has been the case for me and is what Wallace's "The Sjogrens Book" says too. I am not sure if this form of secondary RA eventually becomes erosive though. This is what I plan to ask my rheumy when I see him at the end of this month. When my diagnosis was RA I used to get fed up with having only my finger joints scrutinised. Now the rheumy is much more interested in my brain and lymph glands, night sweats etc. I would quite like him to look at my joints again! Can't really win can they?
For what it's worth, maybe 2 cents, :), I will give you my take on things as an RN.
Osteoarthritis- this is a common degenerative disease that occurs in almost everyone due to aging. It's most common after the age of 50, I believe. The stiffness in the morning is short-lived and the pain and stiffness increase with use. It's due to break down of cartilage and wear and tear on joints from everyday use. It is not necessarily symmetrical, although it can be. It is not auto-immune.
.
Rheumatoid Arthritis- this can occur at any age, even in young children. It is autoimmune. The pain and stiffness in the morning lasts long and decreases with movement, usually. It is due to the attack of cells in your synovial fluid. It is almost always symmetrical.
SjS joint pain- The symptoms mimmick the RA symptoms but it doesn't do the damage that RA does. And the swelling is not as severe.
http://www.southfloridamedicalresearch.com/extreme-differences-rheumatoid-arthritis-ra-osteoarthritis-arthritis-oa/
Thank you for your responses Mat and Kadiddle.
I seem to have a mixed bag of various joint symptoms and tendon pain as well.
Very confusing... ???
The rhemy wants me on Prednisone 20mg to check if it's AI related.
Any suggestions for pain killers in the meantime?
Good question about meds for pain. I am just as stumped as you are one that one. I haven't even seen a Rheumy yet. Right now, I am on Meloxicam and to be honest, I don't think it helps much. However, I haven't gone without it either, so I don't really know.
I would definitely do the Prednisone, as your dr. ordered.
I so hate all the unanswered questions myself.
I really hate to go the Prednisone route, but that's all I'm being offered right now.
I did 10mg awhile ago and it had no effect, so I'm weary about beginning again.
Right now I'm on antibiotics for a salivary gland infection in any case
so the Prednisone will have to wait.
Good luck Sharon. I pray that you will find answers.
I am so new to this. I know too much as a nurse to do tons of research, but I am so new to this whole SjS thing that and have read so much that I am confused and overwhelmed.
Once I see my Rheumatologist, I hope I find answers, and learn what questions I need to ask. :)
Thank you Kadiddle!
I know what you mean about being overwhelmed...
I honestly don't know which SJS symptom to treat first I have so many.
The most important thing to remember is not to panic,
as stress has a way of exacerbating everything.