Do I really have Sjogren's?

[Blomst]

Hi everyone!

I'm new here, and I'm hoping to get some input on my situation.

Background: 25 year old girl, athletic and normal weight, full time student. I woke up with severe pain in my hip nine months ago, completely out of the blue. After a couple of weeks of waiting for it to go away by itself, I went to a physiotherapist and had an MRI. Turned out the hip joint was inflamed (synovitis), no sign of injury other than that. Because of this, I was referred to a rheumatologist. I have somehow misplaced the copy of my blood works, and all I can remember is that I was ANA positive (high titre), positive for Anti-SSA and Anti-SSB, and some other markers as well, but I can't recall which ones. HLBA27 negative. My sedimentary rate has been slightly high on every blood test I've done since that, and my hemoglobin has been slightly low. My rheumatologist first suspected Lupus, but I don't have any of the typical signs of Lupus, so they moved on to Sjogren's. I had my mouth tested (just spitting in a cup, no biopsy) and I do produce very little spit, but my eyes (according to the Schirmers test) are completely normal. My hip didn't improve even after two cortisone injections into the joint, so six weeks ago I was put on Methotrexate (now at 20 mg/week). After starting the methotrexate, my hip has shown some improvement, my hemoglobin has gone up a bit and my SR is almost in the normal range now, but I'm hating the way this drug makes me feel (so drowsy). I haven't experienced any other symptoms besides the inflamed hip joint and the dry mouth. (Edited to add: I have had a swollen lymph node under my jaw since January, but it doesn't look anything like the swollen Parotid glands that are associated with Sjogren's, it's small and round and I'm 99% sure it's the Tonsillar gland, not the Partoid glands). The dry mouth hasn't really bothered me, I didn't even realise it was dry before I had the test done, but I have had some problems with cavities.

So my question is, does this sound like Sjogren's to you? I know no two cases are the same, but I can't seem to find anyone whose main (and pretty much only) symptom is one persistently inflamed joint. I have now been "temporarily diagnosed" with Sjogren's, and I've been transferred to a rheumatological unit at another hospital for further assessment (they're more specialized in autoimmune diseases), but my appointment there isn't for another six weeks, and I'd just like to know a bit more about what I can expect. In an ideal world, I don't have any autoimmune disorder at all, but I'd still prefer for it to be Sjogren's rather than Lupus if I have to choose. So what I guess I'm trying to do here is ask if anyone can relate to my description, or otherwise has any thoughts on whether it sounds likely that I have Sjogren's (or even an autoimmune disorder at all). Thanks in advance for any replies!

[JoanElizabeth]

I am still fairly new to this diagnosis but it seems in a lot of younger people dryness is not the biggest issue. I am 20 and only have mild mouth dryness and no eye issues. My first issues were my joints, when I was 10. The autoimmune component was missed for 6 years and as a result I had 3 joint surgeries. With early treatment though it sounds like you should be pretty well off.

I would also like to mention Sjogren's is actually super similar to Lupus and some literature actually argues many people diagnosed with SLE probably actually have Sjogren's. Most case of either disease are fairly mild but both can also have some pretty severe organ involvment (not to scary you).

It sounds like you are on the right track with the methotrexate for the joint involvement and getting the second opinion! Good Luck!

[alwaysimproving]

Welcome Blomst. I am also a young student (I'm 21 and Male) and at our youth having to possibly deal with a chronic illness can be scary.
I posted this in another thread but it's applicable to you as well:


The first few steps to take now:
1. Recognize that it is very normal to feel depressed and anxious about this, but the depression and anxiety ARE the worst symptoms at the moment and require the most immediate attention. Please talk to your friends and family about how you are feeling and your fears.

2. Avoid researching Sjogren's on the internet. It will not help you think that you have a different condition or make you feel any better. Remember: MILD cases of any disease get much less attention (mild cases are always grossly missed or under-reported)than SEVERE cases.

3. Understand that Sjogren's has a very wide presentation and even if you do have the condition, which I know you would rather not, it will be manageable. Is there a cure for it now? No. But there may be one within the next decade with increased research in immunology, stem cell therapies, and genetic therapies.
Can you REDUCE the symptoms to where you don't feel miserable daily? YES. This last part is important whether or not you have Sjogren's.


---------
Having the high ANA, sed rate, and Anti-SSA and Anti-SSB as well as the joint pain .are best defined by Sjogren's from my reading. It's a good thing that you do not have any eye dryness. Keep us posted.

Since I'm also a student and young and so is Joan Elizabeth, if you want to talk to someone closer to your age and also in the process of getting a definite diagnosis, please feel free to reach out to me.

[Blomst]

JoanElizabeth: Thanks for your reply! Your post reminded me of a sort of follow up question that I forgot to ask in the first post. Like I said, I am really not enjoying Methotrexate, I feel like I'm constantly severely sleep deprived and it's just extremely inconvenient at this point in my life. I am now just in the middle of writing my master thesis, and when I finish it in December I'll start working in a big business law firm. This has been my dream of mine and something I've worked really hard for, but this career also means on average 11 hr work days and of course, having to be very alert all the time. And the way I feel now, I don't even see how I'm going to manage finishing my master thesis...  Sooo, the question! Does Methotrexate also work in preventing further symptoms? Because basically nothing would make me happier right now than being told that I can stop the Methotrexate the moment my hip is feeling fine (fingers crossed it will soon). But if the Methotrexate can also prevent further symptoms, then I guess I'll be better off all in all by continuing it...  (Provided that I actually have Sjogren's.)

Alwaysimproving: Thanks for that reminder. However, re: nr. 2, I do still have reason to suspect that my inflamed joint is not a result of Sjogren's, as I don't have a definite diagnosis yet. So I'm looking for information that either supports or (hopefully) disputes that I have Sjogren's.

[eye2dry]

hello Blomst.


I was diagnosed with sjogrens in 2010 and it was  right hip pain that

caused my family dr to refer me to a rheumatologist.  So, yes, you can

have only one joint pain. My ANA, RF and SED RATE were all very high.

Like you I was also positive SSA and SSB which is when I got the

sjogrens diagnosis.

My rheumy said with positive SSA and SSB I had sjogrens.

Why is your diagnosis of sjogrens still up in the air?


shelly

[SunshineDaydream]

Welcome to the forum, Blomst. Sjogren's presents in a variety of ways and different people experience different symptoms and degrees of symptoms. Even an individual can experience a variety of symptoms and different degrees of the symptoms from day to day. Your positive lab results for SSA and SSB along with dry mouth are definitely indicators Sjogren's.

Sorry to hear you don't like the way methotrexate makes you feel. I'm wondering why your doctor went straight to methotrexate without first seeing how you do on Plaquenil. Plaquenil is often the first medication rheumatologists have Sjogren's patients try before moving on to something else if it doesn't work. Six weeks is a long time to feel drowsy until your next appointment. If you are too uncomfortable, unproductive or unable to concentrate, you can try contacting your current doctor to report side effect and inquire about trying a Plaquenil or maybe reducing the methotrexate dosage. If that doesn't work, it's definitely worth discussing with your new doctor who you can call to see if there are any cancelled appointments which you might be able to use to move your appointment sooner.

In addition to aiding with digestion, saliva contains enzymes that clean teeth. More saliva would also be helpful for you since you are athletic. Salgen and Evoxac are medications that help people produce saliva. You can also ask your doctor about trying those meds. In the meantime, here's a thread that contains suggestions for how to help combat dry mouth: https://sjogrensworld.org/index.php?topic=10139.0

[Blomst]

Thanks for your replies, Shelly and SunshineDaydream! All of this is really helpful.

Shelly: how long did it take before your hip was fine again? And what did you do to treat it? For me, as I said, it's been nine months of pain now, and I am so tired of being in pain. I used to be super active and work out a lot, and now I dread even going to the mall because of the pain... I really want my old life back!

As for the diagnosis, there are a couple of reasons why I don't have a definite diagnosis yet. The main reason is that I was positive for almost all of the rheumatic markers (I just don't remember them all), so based on the immunology alone, it could be Lupus, Sjogren's, RA or another disease as far as I could understand. But since I didn't report any other symptoms, and only one joint was affected, they initially said that they would just try to treat the joint inflammation in itself and not worry too much about the blood test results (after all, not everyone who is positive for antibodies are actually sick). The hospital unit where I have been going is mainly specialized in treating non autoimmune disorder related joint inflammations. So they tried just treating the hip joint with cortisone for a while, but as that didn't really work, they ordered the eye + mouth tests. And when the mouth test turned out to be positive, they considered it a sign that it is indeed a systemic issue, and put me on the Methotrexate. But since this unit is not specialized in the finer diagnostic work, they simultaneously referred me to another unit to get a certain diagnosis. I should perhaps add, I live in a country with free public health care, so it's not really possible to call and try to get an earlier appointment as it's all based on waiting lists, no "skipping in line"  But I am actually seeing my current rheumatologist tomorrow to go over my latest blood work (the bi-weekly tests to check that I am tolerating the Methotrexate) and discuss how I am doing, so I will ask about changing the medication or reducing the dose then.

[SunshineDaydream]

Aah, yes there are positive and negative aspects to our different types of healthcare systems. Glad to hear you have an appointment tomorrow. I hope you find relief from both your symptoms and side effects.

[JoanElizabeth]

I have never been on methotrexate but I have heard to help manage the side effects most people take folic acid supplements as it inhibits the body's folic acid production I believe. So that may be one thing to bring up tomorrow. The other thing is pills vs. injection. Doing injectable mtx instead of pills can also lessen at least GI side effects, I am not sure about fatigue but it is worth asking about if you are on the pills currently.

As far as stopping progression and preventing flares it definitely helps but if you are symptom free with normal inflammatory markers many rheumatologist would say you are in remission. Generally there is a certain time period they want to keep you on the meds for (which may vary by case and doctor) but if you stay in remission you can usually be taken off the meds at some point. When you see the new specialist the issue of prevention may be something to ask about.

I can definitely empathize with the fatigue issues. Currently it is one of my worst symptoms and I am worried about the med I am starting tomorrow morning (Imuran/Azathioprine, which is similar to mtx) making it worse. However I have to weigh that against not treating the disease. I think in school we have a habit of comparing ourselves to our peers which can be dangerous. One of my doctors pointed out that while I may think the person next to me is holding it all together and doing so much better than me they probably also think that about me not knowing I feel like I can barely keep my head about water and they may feel the exact same way.

[Blomst]

I do take folic acid already, and as far as I was told, the only way injectable mtx is better than pills is for GI side effects, like you say. And luckily, I haven't experienced any of that! And thanks for the info about the long term prospects.

As for us students comparing ourselves to others, that's definitely a good point. However, I am mainly comparing myself to how I have been doing up until now, and going from being a very high performing student and getting job offers long before graduating to not seeing how I'll be able to even finish my degree in time is really tough. And even though it's definitely gotten worse after the mtx, honestly this whole spring semester has been horrible and my academic work has already suffered a lot. Both because it's hard to concentrate when you're in constant pain, but also (and probably more importantly) because of the mental strain of both having to come to terms with possibly having a chronic condition, and the sudden involuntary shift in lifestyle (from working out 5+ days a week and being a "Duracell bunny" to basically being totally sedentary). I am just hating the turn my life has taken so, so much. But I know I'm preaching to the choir here and that there are SO many people who are much, much worse off than me. I'm sorry for being such a whiner, I guess I just needed to vent a little bit

[JoanElizabeth]

Don't feel bad. This is the place to whine. Quite frankly it is all super unfair. We are supposed to be at the prime of our lives but we are too busy being sick to enjoy it.

I have been sick and had chronic pain since I was 10 which is someways I look at as a good thing since I never totally went through the transition you are going through now. If you really think the methotrexate is making the difference between functioning and not than you should bring it up tomorrow but if you were struggling prior to it than it just may be the underlying disease (probably not what you want to hear). If you end up being diagnosed with another inflammatory arthritis like RA (you may have RA with secondary SS), then a biologic may be a good treatment option although many healthcare systems might require you to fail methotrexate first due to the cost of the biologic. I was on Enbrel for a little while, it didn't help me much but I know some people who it works great for their inflammatory arthritis and gives them more energy. Your biologic options are greatly affected by your diagnosis in the end because TNF infibitors such as Enbrel have not been shown to help in SS (I was put on it before my Juvenile Arthritis diagnosis got changed to SS)

[eye2dry]

hi Blomst.

I take Plaquenil and methotrexate.

In the beginning I got cortisone inj into my right hip and started

on prednisone while waiting on the Plaquenil to kick in.

It took 4 months for the plaquenil to make a difference in

joint pain and helped with fatigue. I was weaned off then from

the prednisone.

Eventually RA was added to my diagnosis and I was started on methotrexate

to help my joints from being destroyed by the RA.

I am still  not completely pain free but so much better than 2010.

The fatigue is still hard to deal with though.


shelly