Author Topic: NOT Sjogren's after all...  (Read 8043 times)

MAT51

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Re: NOT Sjogren's after all...
« Reply #15 on: December 03, 2014, 11:43:52 AM »
Hi - I too have a diagnosis of RA and have many symptoms of SS despite negative blood work for SS antibodies. My rheumy will only acknowledge the Sicca and will not take on board the reason I have severe small fibre neuropathy, nose bleeds from dry nose, foul taste and upper abdominal problems and an ESR of 55 just now. He is only interested in my joints - which despite being RA drug free for five months (I'm horribly intolerant of drugs - failed three dmards to date) are fine in terms of swelling these days. I would swap joint pain and swelling for this terrible nerve pain any day. All this sitting on the fence just because my bloods are negative for Ro and La. Sjogren's has never been mentioned - GPs seem to think it only comes in secondary form and I've never even been offered a lip biopsy.

I'm now seeing a neurologist whom I hope may be more discerning. My GP is actually great and says he's sure I have Sjogren's but I just don't think any of my medical team know much about it beyond Sicca.

I also saw a professor of connective tissue diseases in April and he just said Sicca with Raynauds (now re-diagnosed as small fiber neuropathy) as part of my RA and told me these things would only ever be a serious nuisance - were relatively benign - but the RA drugs wouldn't help them at all and I just have to learn to manage them. It was the RA that the Methotrexate was being taken for at the time and RA that could do serious damage if it returns -  but he said these other CT symptoms would not be helped by MTX. So how come it all got much worse when I stopped MTX then and how come the SFN is so advanced now? The neurologist described it as progressive so I'm losing sensation and simultaneously in great pain a lot of the time - so frustrating!
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

kikil

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Re: NOT Sjogren's after all...
« Reply #16 on: December 03, 2014, 03:16:07 PM »
 Ouch! @MAT51 Your neuropathy sounds incredibly painful. Did you say the professor's opinion was that your RA meds might exacerbate the sicca? That hadn't occured to me. Have you not been given anything for the SFN?

I'd love to quit taking the RA medication (Arava), but the rheumatologist keeps reminding me of how much joint pain there is every time I have stopped.

Actually, I don't see why my rheumy does not even think it is secondary Sjogren's in my case. Now it seems he is doing such a wide range of tests...everything form B16 or D vitamin deficiencies to diabetes to thyroid or lymph problems.

So that leaves me asking what else could be causing these symptoms?

MAT51

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Re: NOT Sjogren's after all...
« Reply #17 on: December 03, 2014, 03:28:30 PM »
Well you are lucky that your rheumy is checking for all these things now at least. Mine never checks my B12 or vitamin D although the GP has checked and the neurologist ruled out diabetes and B12 deficiency and my hypothyroidism is well controlled with Levothyroxine apparently. So, like yourself I'm wondering what could be causing my relentless small fiber neuropathy etc and only thing left that flags up for all these symptoms is Sjogren's. If we can have sero negative RA then surely we can have sero negative Sjogren's? 

I guess there's so much overlap that it takes them a long time to sort out what is causing what. The professor confirmed that I certainly had autoimmunity and that the diagnosis of RA three years ago was robust. He said the Sicca and Raynauds (not!) would just come and go and were not treatable apart from topically or with a vasodilator drug. I was on Methotrexate and Nifedipine when he saw me but had to stop both because of reactions. All my symptoms point to Sjogren's and yet because I have a confirmed diagnosis of RA they will only treat me if it comes back in as synovial swelling. Perhaps it would be different if I had a diagnosis of Sjogren's and I would be able to try immunesuppressant meds again but I'm so intolerant of drugs that they are very wary now. I'm just taking Naproxen and Duloxetine for the time being and await further neurology tests. I don't think my rheumy will be interested until/ if I present with synovial swelling once more though. It is so frustrating but the Naproxen seems to be working well on the nerve pain which I guess shows it must be inflammtory in origin at least.

I never had the Schirmer's test but my optometrist has done a tear break up test and says they are pathologically dry. Not sure which is the most efficient way to detect Sicca but he told me that Schirmer's has been superseded by tear break up nowadays.
« Last Edit: December 03, 2014, 03:58:26 PM by MAT51 »
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

kikil

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Re: NOT Sjogren's after all...
« Reply #18 on: December 04, 2014, 11:06:11 PM »
Thank you Mat51.

I have had vitamin B12 deficiency in the past, so that is possible again. The diabetes check has to do with me having to use the toilet frequently and being thirsty all the time, especially at night, and having night sweats.

You are right about the sero negative Sjogren's. What I found out yesterday from my dr. friend, is that if one has got RA or other autoimmune disorder first, then (Sjogren's) symptoms like sicca are considered to be symptoms of the RA and not diagnosed as Sjogren's.

I'm not sure what the tear break up test is, but apparently it's not used by my rheumy.

Because I have so much pain without the RA med, he has discourged me from ceasing that, although I do not like the side effects: frequent infections of all kinds, hair loss, and probably others.

Thank you!!
--Kikil


MAT51

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Re: NOT Sjogren's after all...
« Reply #19 on: December 04, 2014, 11:20:57 PM »
And thank-you in return Kikil for confirming that the sicca et al goes under our RA diagnosis rather than being seen as some separate autoimmunity as I had been told.

What I still don't really understand is whether it's possible for the RA to come as a sub-heading to the Sjogren's at all i.e the other way round. For me my Sjogren's symptoms seem more severe than my RA ones have been and yet I was told that they would only ever just be a nuisance and it was the RA/ synovial swelling and pain that should be the focus of drugs etc. Over five months after stopping Methotrexate injections (side effects were worse than the disease) I find that although I've been pretty ill, I haven't yet had a return of the severe joint pain and swelling in my hands. Other times when I stopped it over three years, or tried other DMARDs, the pain and swelling came back pretty fast as you describe happens to you and other RA friends. I wonder whether, in my case, the disease has morphed into some other autoimmunity such as primary Sjogren's now - or whether SSJ was my main autoimmune problem from the start and the RA was just a sideways step. I will ask my rheumy this next time I see him - hopefully in January. Mat
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

kikil

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Re: NOT Sjogren's after all...
« Reply #20 on: December 05, 2014, 09:08:27 AM »
MAT51 According to my dr. friend, some have the RA first, and some have the Sjogren's first, so you are right, of course.

At first, they gave me Methotrexate, but it caused me to puff up like a balloon (water retention all over), so I was switched to Arava (which have their own side effects, though of a whole different type).

Basically, the Arava suppresses my immune system and I end up catching infections of all kinds. When on antibiotics, I have to stop the Arava. Then the joint pain comes back, so I start taking the Arava again. (Endless circle) My friend suggests I could strengthen my immune system with homeopathy, but I think if my immune system has to be suppressed with Arava, that might be counterproductive.

Does anyone else feel that they are on this kind of endless cycle?

MAT51

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Re: NOT Sjogren's after all...
« Reply #21 on: December 05, 2014, 09:19:08 AM »
Thanks for this. I've tried Sulfasalazine, Methotrexate oral and injection and Hydroxychloraquine over three and a half years. MTX Was the drug credited with squashing my RA as I was on it for two years - but finally sickness both ends and foul taste became too much for me. I'm based in Scotland and have been told that if it comes back in my hands as it was when I was diagnosed I will be offered a biologic drug. I don't know where my RA has gone but unfortunately the neuro symptoms and treatments are even worse to me than RA. My overactive system seems to need suppressing badly but Arava/ Leflunomide is not a drug my GP favours for me with my particular symptoms - unless the synovitis returns.

I don't think people who suggest homeopathy for systemic inflammatory diseases know how harmful these diseases can actually be to sufferers. It is a gamble really but not one I would risk yet.
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

Carolina

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Re: NOT Sjogren's after all...
« Reply #22 on: December 05, 2014, 09:45:04 AM »
Endless Cycle!

That's me.  I thought I was through getting new things.....

But now I have this special horrible sort of acid reflux, which goes up to my sinuses and gives me headaches, hoarseness and sore throats.

Now this doesn't sound like a big deal compared to what you're dealing with kikil.

But I already have a host of issues, and did not want one more.  Especially one that seems to require me to eat almost nothing I like.

So I'm whining.

Yes, count me in to the endless cycle.

Hugs,  Elaine
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eija

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Re: NOT Sjogren's after all...
« Reply #23 on: December 05, 2014, 05:40:47 PM »
And thank-you in return Kikil for confirming that the sicca et al goes under our RA diagnosis rather than being seen as some separate autoimmunity as I had been told.

MAT51, I think you've been told correctly. I can't find anywhere that Sjögren's would not be a separate diagnosis if it occurs with RA. On the opposite, it says everywhere, that with another autoimmune disease, like RA or lupus, it's secondary Sjögren's.

Quote
Other signs and symptoms that can occur in RA include:
 

Quote
Sjogren’s Syndrome. Approximately 10 to 15% of patients with rheumatoid arthritis develop Sjogren’s syndrome, a chronic inflammatory disorder characterized by lymphocytic infiltration of lacrimal and salivary glands.
(http://www.hopkinsarthritis.org/arthritis-info/rheumatoid-arthritis/ra-symptoms/)

Quote
Sjögren’s syndrome is classified as either primary or secondary. Both are systemic diseases, meaning they can affect many systems in the body, and they occur with about equal frequency. The primary form causes early and gradually progressive decreased function in the lacrimal and salivary glands, and can include a variety of extraglandular conditions. The secondary form occurs in people who already have another autoimmune connective tissue disease, most commonly rheumatoid arthritis (RA) or systemic lupus erythematosus (SLE). These people then develop dry eyes or dry mouth.
(http://www.niams.nih.gov/Health_Info/Sjogrens_Syndrome/)

Quote
Sjögren’s syndrome is classified as either primary or secondary. The secondary form is diagnosed in people who already have another autoimmune disease such as systemic lupus erythmatosus or rheumatoid arthritis. Sjögren’s syndrome cases are fairly equally divided between primary and secondary.
(http://www.arthritis.org/arthritis-facts/disease-center/sjandogrens-syndrome.php)

And yes, it's an endless cycle. And I've had enough of it. Can I get out, please? :P


 
Female, 51, in Finland
Sjögren's, fibromyalgia, hypothyroidism (Hashi?), depression, migraines, pressure urticaria, progressing Raynaud's, MCS...
Cymbalta, Tyroxin, Esomeprazole, Oftagel drops

MAT51

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Re: NOT Sjogren's after all...
« Reply #24 on: December 06, 2014, 12:13:35 AM »
Ha ha yes I'm with you -"beam me up Scottie!". Thanks very much for all your quotes. What I still fail to understand is why my small fibre neuropathy seems much more severe more than any joint pain/swelling and has done for about 2 years now. My Sicca is manageable with drops and ointment  to date and i think primary Sjogrens is much worse. So I am thinking my severe SNF must be part of the neuro side of RA/ Sjogrens.

But I read up last night - http://www.the-rheumatologist.org/details/article/5193081/EULAR_2013_Tips_for_Managing_Peripheral_Neuropathy_in_Rheumatic_Disease.htmlhttp://

- and it seems that SFN with RA is best treated with steroids and symptomatically ie not with IVIg usually. Steroids make me bipolar and so far I've struggled with two anti-depressant nerve drugs and am now struggling with a 3rd. So not sure where that puts me now really as I've failed to tolerate three DMARDs to date as well. Sorry I've hijacked your thread a bit but on the very plus side I'm getting more sleep and am relatively pain free since taking the NSAID Naproxen so much more cheerful for that!
« Last Edit: December 06, 2014, 12:19:33 AM by MAT51 »
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

kikil

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Re: NOT Sjogren's after all...
« Reply #25 on: December 06, 2014, 05:04:52 AM »
I agree with all of you. I think MAT51 means that secondary SS is often not diagnosed (not that it is supposed to be that way, but just that it happens). Thanks to Eija for the quotes.

In the end, maybe I don't tick enough boxes to get a REAL diagnosis of SS, but the rheumy cannot deny I have the symptoms. My eyes and mouth are just not dry eNough, and my blood does not cooperate. The eye doctor's diagnosis says sicca, and that has to be taken care of. The dentist is taking care of the dry mouth care.

Now the rheumy has to figure out what to do with the other symptoms (excessive thirst etc.) that don't fit under any handy RA boxes.

MAT51 That is great that Naproxen is providing pain relief for you!! It is not always easy to find the right one.

MAT51

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Re: NOT Sjogren's after all...
« Reply #26 on: December 06, 2014, 08:11:17 AM »
At the end of the day the reason it matters for both of us that SS is formally acknowledged by our rheumies is because it might affect the treatment options available to us as people with a broader RA. Many of those I know with RA have Sicca but very few have the severe small fiber neuropathy or vestibular issues or gastric issues or non sweating, loss of taste and smell senses that I have. If I'm treated forever as someone with relatively mild, non-erosive RA then I may just have to put up with my peripheral nervous system getting progressively worse. For me this is certainly why it does matter and I think perhaps you feel similarly Kikil. Mat x
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kikil

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Re: NOT Sjogren's after all...
« Reply #27 on: December 06, 2014, 08:49:06 AM »
Yes, MAT51, those are the scary bits. Luckily, I haven't got the neuropathy (yet) or other similar symptoms, but of course that may change in the future. Let's hope our physicians will recognize those important points.

Meanwhile, some of the bloodwork came back. I have less than half of the minimum level for vitamin d, and my vitamin b12 is at the minimum. Now there is something that could make a difference in a lot of health issues.

Hang in there! -Kikil

MAT51

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Re: NOT Sjogren's after all...
« Reply #28 on: December 06, 2014, 08:57:47 AM »
Yes in your case this does sound like you may have cracked it Kikil - Vit D deficiency counts for a lot. Mine was 28 at the end of the summer a year ago and I found this out myself having had D deficiency dismissed by both GP and rheumy as a possible cause. I am now prescribed an AdCal D3 every day and think my level has gone up to low end of normal. My B12 is fine according to my GP but again this could account for a lot if you are feeling rubbish. Mat x
Hashimoto's, seronegative RA, Primary Sjogren's, small fibre nld polyneuropathy, hypertension, IBS-C, GORD, BMS, highly allergic disposition!

kikil

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Re: NOT Sjogren's after all...
« Reply #29 on: December 06, 2014, 09:05:31 AM »
I asked him to check these because I am on a vegan and gluten-free diet. Besides the vitamins D and B12I should also be taking calcium supplements, but he hasn't noted that yet. It is a relief that the blood sugar test was normal.
-Kikil