Newbie with RA and possible Sjorgen's Syndrome

[Starburst]

Hello everyone,

I've just joined here, so thank you for having me. I'm 23 and from the UK. I think I may have Sjorgen's but my rheumy is being non-committal about it.
                                                                                                                   
Brief history: I was diagnosed in 2009 with seronegative RA. I have a persistently elevated ESR with normal CRP which my previous rheumy said is consistent with SLE. However, apart from a high ESR, all my other bloods are normal. That said, I have not had any of the antibodies (ANA, ENA etc) tested for almost a year now. I'm currently taking methoxtrexate 20mg weekly and celebrex 400mg. Plaquenil gave me intolerable side-effects as did sulfasalazine.

My symptoms are: joint pain, joint swelling, joint stiffness, fatigue, dry eyes (positive Shirmer's test), dry mouth (often end ups cracked and bleeding), mouth ulcers, nose ulcers, mild Raynaud's, hair loss.

Some of these are due to RA but I really feel it may be a misdiagnosis altogether and that I only have Sjorgen's. Part of this is due to the fact that I don't have classic RA: my hands are not my worst affected joints, no joint damage (fortunately!) and persistently negative anti-CCP which is meant to be an accurate blood test. Perhaps I have both RA and Sjorgen's, perhaps it is only RA. My previous rheumy was convinced I will eventually show up SLE antibodies in my blood. My current rheumy thinks it's RA and even if it was anything else, she said I'm on the right medication. She wants to treat the symptoms and isn't fussed about the label. I wonder if I'm wrong and it doesn't actually matter....?

I don't feel like my symptoms are under control. In between flares, I'm not too bad but my flares are very intense. My most recent one lasted a month and I was virtually bedbound.

Sorry this was long! I just want to properly understand what is going on in my body and RA can't explain all the symptoms.

Thank you for reading.

[Scottietottie]

Hi Starburst 

Welcome to Sjogren's world. If you do have SjS - and it often goes along with RA - it'll be 'labelled' as secondary Sjogren's. Getting the symptoms treated are the most important thing. I don't think you would be put on different meds from the ones you are currently taking but do make sure they prescribe something for the dryness and see an opthamologist about the eyes and use drops without preservatives which an optho will prescribe.

Take care - Scottie 

[A66eyroad]

My goodness! How awful for you!

I'm afraid I don't have any answers, but I would like to give you a soft (((hug))) and tell you welcome. We've got lots of really knowledgable people here -- hopefully somebody will know a whole lot more about labs than I do.

Meanwhile, I do have a question for you and/or your rheumy --- would the treatment be different if SJS were added to your dx?

[Joe S.]

Welcome starburst. A lot of people do not have a diagnosis. You may want to read "spoon theory" to clue you into management of good and bad days.

[eye2dry]

Hi. your story sounds somewhat like mine. How are your eyes? My eyes and my dry mouth are the worst of the SS. At times I would just like to remove my eyess and soak them in water/oil and then put them back in. I constantly chew sugarless gum and have a water bottle handy. pilocarpine side effects were too much for me, had to give it up, but it was very effective.

I have been viewing this site for months and I know I can and will get good advice here.

shelly

[Patze]

Hi Starburst,

Let me also welcome you to the SJS World and family!  I hope that you find the board as warm and welcoming as I have all these years.

I'm another sero negative person with a consistently high ESR and my CRP is either at high end of normal or just above...weird.  I don't have RA, but have secondary SJS to Hashimoto's and there are days where I don't know which one is responsible for what symptoms - very maddening to be sure!

Again, welcome, and I hope that you get some answers soon.

Take care of yourself -

Patze

[Bucky]

Hi Starburst - welcome!   

It's good that your doctors are treating your symptoms - and I wouldn't be so concerned to have a specific "label".    I've heard other members mention that their doctors wouldn't really commit to calling it Sjogren's . . . for now . . . then, down the road if other symptoms come along, they then call it Sjogren's.  Each doctor is different.   

We have quite a few members in their 20's - from all over the world.  Here's a post from a little over a year ago:  https://sjogrensworld.org/index.php?topic=13740.msg143907#msg143907  Since that post, we've had so many new members - a fair number in their 20's.

There's a wealth of information here on this forum.  I hope you find it helpful to you on your journey.  If you type in a key word(s) in the search box to the top right of this page, it will take you to previous threads about that topic.

Here in the States, Starburst is a type of candy.  Do you have that there in the UK?

Bucky

[Meld256]

Hi and Welcome, Starburst! 

Your symptoms sound a lot like mine, except for the hair loss. RA and Sjogren's seem to present so similar with some of us.

You've received some great advice and welcomes already but I wanted to also welcome you.  Scottie's info. about checking into treatment for your eyes is important.  Please feel free to come here to ask anything, or pop in and comment anywhere.

We look forward to hearing more from you.  We all support and encourage one another in a positive way and I think you'll enjoy your time here. 

Melinda

[Starburst]

Thank you so very much for the warm welcome. 

To answer all your questions:

A66eyroad I'm not sure if my treatment would be different if I was diagnosed. I guess that's part of the reason why I wanted to know if a 'label' was important. I see her in February and will be asking that question.

eye2dry My eyes feel gritty and sometimes everything is blurry. I, sometimes, feel like there's something stuck in my eye. I've never cried many tears. It's always been a family joke that I cry 'noises' and very few tears. Before I went on plaquenil, I saw an opthamologist who did the Shirmer (sp?) test and he said my eyes are quite dry.

Bucky Yes, we have the candy here but we call them sweets! I love them, hence my name.

To those I didn't mention by name, thank you again for the welcome and the helpful tips. I'm sorry that so many others also are suffering with symptoms.

I'm very glad I found this place and thank you for having me!

[Carolina]

Welcome Starburst,

This is a great place for you.

You will find that most of the time things are a bit confusing, especially in the beginning.

Sounds like you found a pretty good doctor, for starters.  One who wants to deal with what is bothering you and not totally hung up on diagnostic test results.

So many of the co-conditions of autoimmune conditions go together.

Here's a list I found helpful on Julia's Blog:  Reasonably Well, Living with Sjogren's Syndrome.

She divides the symptoms into glandular and extra glandular.

Glandular symptoms arise due to lymphocytic damage in lacrimal, or tear-producing, glands; and salivary, or saliva - producing glands. In other words, lymphocytes, specific white blood cells, mistakenly identify normal tear and saliva producing tissue as not belonging to the body, and destroy those tissues. The result?
Dry eyes
Dry mouth
Altered sense of taste and smell
Dry upper respiratory tract
Voice becomes hoarse after speaking
Development of oral yeast infections, or candidiasis
Parototitis, or inflammation of the parotid salivary glands, and production of stones in the salivary glands

Extraglandular symptoms occur elsewhere in the body, and the list is extensive:
Skin
Lungs
Gastro-intestinal tract
Pancreas
Liver
Heart
Neurological system
Kidneys
Joints
Reproductive system
Fatigue
Increased incidence of lymphoma

http://reasonablywell-julia.blogspot.com/2010/01/glandular-and-extraglandular.html

Don't worry about what might or might not come next.  Everyone progresses differently, and some progress very little.  Those people don't spend a lot of time on this forum, of course.

And each medication and treatments works differently for each person.

So you have to work it out as you go along.

Here is information, support, laughter  and acceptance.

Welcome again, Starburst!

Hugs

Elaine

[lolo1979]

Welcome Starburst!
I think your treatment would be the same, but I am wondering why they think it's RA primary and not Sjogrens primary?  My understanding is that there are two ways to determine if you truly have RA. One being the blood tests, and the other being scans for joint damage. If your blood tests do not show the antibodies for it, and you don't have joint damage on scans, but you DO have joint pain and dryness everywhere....

Well that to me says Sjogrens primary.

Again, I guess it doesn't much matter, as long as you're being treated. But AM curious about this since I am in a similar boat. My Rheumatoid Factor is in the normal range, but I do have joint cracking and pain (but no swelling), as well as all the dryness. My rheumy says Sjogrens only at this point.