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**y-gwair** · 19-Mar-2012, 11:22

First, I think you need to find a better rheumatologist. As far as I know a positive lip biopsy for Sjogren's is conclusive, I can't remember what the scoring system is, but my rheumatologist said that any changes were conclusive. Being Ro/La negative means nothing, a significant proportion of Sjogren's sufferers don't have them. The presence of hypothyroidism and Raynaud's is also highly suggestive of Sjogren's too, according to my rheum (there is a list of inclusion criteria for Sjogrens, and it includes all these things). Ask them to test immunoglobins, as these can sometimes give a clue to how much non-specific inflammation you have (which is sometimes the case while AI conditions are still evolving). So sign up to the Sjorgen's World forum asap, and maybe someone can help point you towards a more up-to-date Rheumatologist in your area.

I would start taking Plaquenil immediately. Yes there are issues with eye problems, but they are quite rare and certainly don't outweigh the benefit you will get in slowing down the progression of Sjogren's. I see no reason why you can't start pilocarpine treatment now and take it concurrently with plaquenil (Plaquenil isn't that effective for dry eye/mouth symptoms in Sjogren's unfortunately).

Re. the rest of your problems, you may want to refer to my recent post. I've had more or less all the symptoms you list and, after messing around with a range of useless specialists and treatments, we've finally got to the bottom of what is wrong. I have dysautonomia, which means my autonomic nervous system is not functioning, and it's certainly secondary to some sort of connective tissue disease.

This condition often occurs with both thyroid and Sjogren's, and Raynaud's phenomenon probably indicates that there are anomalies with blood vessels and circulation. For the last year I have been being treated for severe rosacea with little success, which now turns out to be full-blown erythromelalgia, again caused by damage to the collagen in blood vessels. Even your problems with Spondylolisthesis may be being caused by lax connective tissue.

Hyponatremia suggests that you have problems keeping minerals in your system, which again might have an autonomic cause. Hyperactivity of the sympathetic nervous system can affect the functioning of the adrenal system, causing low blood volume and also increased urination, or loss of electrolytes via urine. It's also associated with either Postural Orthostatic Hypotension or Tachycardia, so it might be worth taking your blood pressure and pulse, first lying down at rest and then again after standing up for a few minutes; normally there shouldn't be much of a jump in BP, but in these disorders, either the pulse and diastolic rises in POTS, or the Systolic falls in OH.

Sorry, that's all quite a lot to take in, but I think you definitely have issues that should be taken seriously, diagnosed thoroughly and treated aggressively.

**LisaLis** · 19-Mar-2012, 13:25

Hi

I would get a 2nd opinion.

**shanku** · 19-Mar-2012, 17:39

Thanks for your response and suggestions. y-gwair - I feel saddened by your diagnosis and pray for your well being; on the brighter side, hope you find some treatments now that you have isolated the disease. Last couple of days have really brought me down and made me sit and reflect. Feeling a little sombre lately...

No doctor is effective partner in this journey; in last 3 years of my association with this Rheumy and Ophthalmologist - both from local university, I had to push them to do the autoimmune blood the tests/x-ray in spite of continued worsening of symptoms. But I can not complain - the other best university eye center in the area never even cared for these...they never tried to look at the big picture - beyond the eye - in spite of last 6 years association with them...they are lost in the world of eye drops, plugs & gels/ointment. I also informed the out-of-station dry eye specialist about this lip biopsy report but no one expressed concern or suggested me any treatment. Rather they all kept uttering their favorite theory of dry eye.

Even for lip biopsy - Rheumy never recommended me doing it as the labs were fine. I had to literally push her to order it when my symptoms got worse in the past year and now have been pushing her to treat it! Even the ENT doctor who performed the biopsy said they is no need for any concern and no treatment is required at this point. Ophthalmologist this time however said some one of my age/health should have no salivary gland inflammation.

On the 2nd opinion about Sjögren's diagnosis - the other university Rheumies in the area require referral. I have to start working on that and sure it will be several months to see anyone. I do not even have a trusted GP/PCP partner doc to do the referral. All the GP/PCPs I saw were useless and tried to exploit me rather them help me sail thru this.

I plan to get a baseline vision test before starting Plaquenil and monitor it periodically.

Hyponatremia - Kidney doc thinks that it may be from drinking excessive fluid consumption and suggested salt supplementation and have been doing better with that. He also ran couple of lab tests to evaluate kidney functions but as of now do not see any concern. I bet it had an impact on my tear quality too all this while and made my eyes miserable. Even though I have been telling all docs about excessive fluid consumption but no one guessed its impact; it was discovered couple of months back, when I complained about dizziness when my stomach got upset. I also used to have headaches and light-headedness which is better managed these days.

Sciatica/Spondylolisthesis - Orthopedics did MRI/X-Rays but never cared for blood tests. I think it got worse with Hyponatremia and after starting above salt supplementation and regular exercise the symptoms are better managed now. I used to have constant pulling sensation in my left ankle/IT band which is less severe now.

Raynaud's - Again my PCP was clueless. Now I see that it is listed as one of the symptoms of Sjögren's.

GI upset - I read that it also can be a Sjögren's symptom. I have to work with my GI doc on this as he has just put me on PPI after doing a GI endoscopy/biopsy. Interestingly this problem manifested after I started allergy shots which is again something to do with immune system! Another theory is that my excessive fluid consumption may have impacted here too. I tried going off all medications for 6 weeks or so and continued only on probiotics but still no improvement. Only PPI helps somewhat.

I read that PPIs can interfere with Plaquenil, will couple of hours gap between both help it?

Rosacea - again on antibiotics and different topicals - metronidazole/finacea/klaron but no success yet.

Sinusitis - read that this can be a Sjögren's symptom too but had surgery already.

Hope I am somewhere close to right track now! Wish you all good luck!

**fiddle** · 19-Mar-2012, 17:52

I too have sjogrens and want to warm about the side effects of plaquenil. I had a fellow sjogrens patient/friend lose most of her eye sight to this drug last year so be careful when considering it. My rheumy (second one and the best by far) told me that this drug is used to treat chronic fatigue and joint pain of sjogrens, not dry eyes. For that they prescibe the usual of restasis.
I agree you need to get another opinion and try to find, if you can, a rheumy that you are comfortable with. It worked for me.
fiddle

**y-gwair** · 19-Mar-2012, 18:04

Shanku, nothing you list here is inconsistent with what I said earlier, the fact you have been drinking more suggests your body is trying to compensate for low blood volume, I've had the same problem.

If you have a connective tissue disorder, it affects every part of your body. Sjogren's isn't just a dry eye /mouth problem, it is a connective tissue disease associated with a whole host of other problems, of which some degree of autonomic failure is almost certain.

One thing I've learned over the years of trying to sort myself out is that seeing multiple doctors from different disciplines makes it more difficult for anyone to see the bigger picture. It doesn't occur to dermatologists that your skin problems might be symptomatic of a more systemic disease, same with ophths and even rheums.

Re. your skin, if you don't have papules it's extremely unlikely that antibiotics will help at all, I wouldn't was any time on them. If you have Raynaud's it's far more likely that the flushing is linked to microvascular changes, and drugs like clonidine are indicated (betablockers tend to exacerbate muscle problems.

It's your life, you can choose to take my advice and look into the complications of connective tissue disease further, or spend the next 20 years messing around with dim doctors who simply fail to see the bigger picture.

Originally posted by shanku View Post

Thanks for your response and suggestions. y-gwair - I feel saddened by your diagnosis and pray for your well being; on the brighter side, hope you find some treatments now that you have isolated the disease. Last couple of days have really brought me down and made me sit and reflect. Feeling a little sombre lately...

No doctor is effective partner in this journey; in last 3 years of my association with this Rheumy and Ophthalmologist - both from local university, I had to push them to do the autoimmune blood the tests/x-ray in spite of continued worsening of symptoms. But I can not complain - the other best university eye center in the area never even cared for these...they never tried to look at the big picture - beyond the eye - in spite of last 6 years association with them...they are lost in the world of eye drops, plugs & gels/ointment. I also informed the out-of-station dry eye specialist about this lip biopsy report but no one expressed concern or suggested me any treatment. Rather they all kept uttering their favorite theory of dry eye.

Even for lip biopsy - Rheumy never recommended me doing it as the labs were fine. I had to literally push her to order it when my symptoms got worse in the past year and now have been pushing her to treat it! Even the ENT doctor who performed the biopsy said they is no need for any concern and no treatment is required at this point.

On the 2nd opinion about Sjögren's diagnosis - the other university Rheumies in the area require referral. I have to start working on that and sure it will be several months to see anyone. I do not even have a trusted GP/PCP partner doc to do the referral. All the GP/PCPs I saw were useless and tried to exploit me rather them help me sail thru this.

I plan to get a baseline vision test before starting Plaquenil and monitor it periodically.

Hyponatremia - Kidney doc thinks that it may be from drinking excessive fluid consumption and suggested salt supplementation and have been doing better with that. He also ran couple of lab tests to evaluate kidney functions but as of now do not see any concern. I bet it had an impact on my tear quality too all this while and made my eyes miserable. Even though I have been telling all docs about excessive fluid consumption but no one guessed its impact; it was discovered couple of months back, when I complained about dizziness when my stomach got upset. I also used to have headaches and light-headedness which is better managed these days.

Sciatica/Spondylolisthesis - Orthopedics did MRI/X-Rays but never cared for blood tests. I think it got worse with Hyponatremia and after starting above salt supplementation and regular exercise the symptoms are better managed now. I used to have constant pulling sensation in my left ankle/IT band which is less severe now.

Raynaud's - Again my PCP was clueless. Now I see that it is listed as one of the symptoms of Sjögren's.

GI upset - I read that it also can be a Sjögren's symptom. I have to work with my GI doc on this as he has just put me on PPI after doing a GI endoscopy/biopsy. Interestingly this problem manifested after I started allergy shots which is again something to do with immune system! Another theory is that my excessive fluid consumption may have impacted here too. I tried going off all medications for 6 weeks or so and continued only on probiotics but still no improvement. Only PPI helps somewhat.

I read that PPIs can interfere with Plaquenil, will couple of hours gap between both help it?

Rosacea - again on antibiotics and different topicals - metronidazole/finacea/klaron but no success yet.

Hope I am somewhere close to right track now! Wish you all good luck!

**shanku** · 19-Mar-2012, 20:34

Thanks again!

Fiddle, I am curious to know about your friend who had problem with this drug. Was you friend under regular eye check up while on this drug? Following online book recommends once a year eye checkup is enough and the recommended maximum dosage of 6.5 mg/kg/day for Plaquenil to avoid any possible side effects to eye(Retinal toxicity).

http://www.painful-bladder.org/pdf/ch5.pdf

I was prescribed 200mg x 2 times/daily. I weigh 144 Lbs as of today and 5'5" tall. The calculation needs LBM which I am not sure how to arrive at.

**y-gwair** · 20-Mar-2012, 10:35

Usually they only recommend you stay on the maximum dose for 8 weeks or so, then step down to 200mg a day. I'm rather smaller than you, ideally I should take 1.5 tablets a day but I still take 400mg if I'm stepping it up (as I am now again). I don't think my rheum would agree with the article that says it doesn't need treating, to me that sounds like the old-fashioned view among rheums that it's a mild disease, dry eyes/mouth are trivial and can be eased with gels/drops etc, when the reality is rather different. My rheum thinks plaquenil, started early in the disease process, significantly slows progression down.

The problem with a lot of the original studies of plaquenil for Sjorgren's was that they were mainly based on people trying it in in their 50s/60s, who'd lost all gland function by that stage anyway. She says younger people have a much better response to it. She's one of the few Sjogren's specialists in the UK, so I trust her judgment on that (unlike the rheums at my local hospital who were completely uninterested, made it clear that if you didn't have some sort of erosive joint disease you were wasting their time; seeking a second opinion from someone with expertise in Sjogren's was highly worthwhile for me).

**shanku** · 20-Mar-2012, 14:42

You are right, it is hard to find Rhemies interested in Sjogren's. I am working on to get referral to the other local center here but even after the referral there will be very long wait to see someone as a new patient and it may turn out to be another disappointment.

It seems one of the possible triggers for Sjögren's can be from Environmental factors. What does it translate to for a patient? How it can be helped after onset of the disease?

**shanku** · 21-Mar-2012, 10:47

Just want to update that I have a new condition in last few weeks in right arm - my PCP says it is ulnar neuropathy; I read that it may be a Peripheral Neuropathy Symptoms of Sjogren's Syndrome. Anyone else experienced so? Thanks

**shanku** · 23-Mar-2012, 10:05

My Rheumy's response to suggestion for testing Immunoglobins to determine how much non-specific inflammation one has -

This information would not change our treatment plan, so I would not recommend doing it.

I want to find another Rheumy here but can not get appt. before November

**MaryVa61** · 24-Mar-2012, 04:48

Shanku,

There's a Sjogren's Center in Charlotte. May be a good idea to get a consult there, with your lip biopsy report, and any other lab reports, in hand, to confirm a diagnosis and get advice. I think it'd be worth the drive. People often have to go out-of-state to a Sjogren's Center when they are in your predicament. John's Hopkins has a Sjogren's Center too, but probably less pleasant to visit than Charlotte. Link below mentions the center in Charlotte.

http://www.redorbit.com/news/health/...is_overlooked/

Your pharmacist should be able to answer your drug interaction questions. I've found pharmacists to be really helpful with that. I'm an intermediate metabolizer of the CYP2D6 enzyme. Lab Corps has tests for that sort of problem.

I was suspected of having Sjogren's but my lip biopsy ruled it out. Prior to that I was put on Plaquenil because I had so much joint and spinal pain and it has helped with the pain. I've been allowed to stay on it, but I decided after talking with the docs to reduce it to once per day (200 mg) instead of twice just to minimize risks. It still helps with pain, though a bit less.

Plaquenil doesn't seem to help my dry eyes or mouth, but both have gotten better since my chemical allergies were diagnosed. I'm to be evaluated next week by a geneticist in Baltimore to see if I have an inherited connective tissue disorder. Hope to end my search for answers soon. I hope you find your answers soon too!

Mary

**shanku** · 26-Mar-2012, 14:58

Thanks Mary for the pointer about this Charlotte center; looks like they are oral surgeons; what is the appropriate specialty for diagnosing/treating (if any) Sjogren's? This whole lip biopsy thing here involved multiple specialties - ENT performed the biopsy, Rheumy makes the treatment choice and Ophthalmologist associates it with our dry eyes.... Depending on the specialty and doctor patient talks to, he/she gets different interpretation of the problem. Most of the other usual specialists I visit for my symptoms claim ignorance about the impact of Sjogren's on my problems. Also, my current Rheumy keeps saying that there is no treatment for it.

About John Hopkins Sjogren's Center - it seems like it has good reputation but the process is involved and time consuming, and not sure if they will accept me as new patient. But one good thing I noticed is that they suggest one to forward the original lip biopsy slides, not just the report and they re-read it. That sounds like good review of the original pathological finding/diagnosis.

Good luck with your upcoming specialist visit!

**MaryVa61** · 26-Mar-2012, 16:56

Thanks Shanku, for the good luck wishes.

I think diagnosis for Sjogren's can be so difficult that it can involve all those specialities working together. That's why Hopkin's Sjogren's Center has specialists from different disciplines. If someone happens to have classic symptoms and classic blood tests that are positive, the rheum can diagnose. But I've read that as few as 50% of people with Sjogren's will be seropositive. In the absence of that I think it takes confirmation of the dry eye findings from the opth plus a positive salivary gland biopsy from the ENT or oral surgeon. Not completely sure of all this though. Any can treat it, but I think rheums usually handle treatment for Primary Sjogren's since it's autoimmune.

I don't know why your rheumy would say there's no treatment. There's no cure, but of course there are ways to treat symptoms more effectively if you know what the diagnosis is. My rheum's attitude was that he wouldn't attempt treatment without the diagnosis first, which propelled me to get a definite answer one way or the other. My joints and eyes were killing me and I was hitting dead ends when trying to get help.

Mary

**MaryVa61** · 04-Apr-2012, 14:54

Shanku,

To update you on my prior comments, I did see the geneticist and she is wonderful. Diagnosed me with "Heritable Disorder of Connective Tissue, Not Otherwise Specified" (HDCT, NOS) and she is treating me with the help of my local docs in VA. I'm hopeful.

I should have mentioned the my lip biopsy was negative for Sjogren's, but there was inflammation, just not enough for a Sjogren's diagnosis. And since the chemical allergies are treated now, my mouth isn't dry and eyes have improved, although they are still dry and I'm still thirstier than other people.

You have a lot of the same medical problems I have (I read your list), so if you end up with Sjogren's ruled out, you may want to look up info on HDCT's to see if you should be evaluated for those.

Originally posted by MaryVa61 View Post

I was suspected of having Sjogren's but my lip biopsy ruled it out. Prior to that I was put on Plaquenil because I had so much joint and spinal pain and it has helped with the pain....I'm to be evaluated next week by a geneticist in Baltimore to see if I have an inherited connective tissue disorder. Hope to end my search for answers soon. I hope you find your answers soon too!Mary

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Sjögren's diagnosis - prescribed Plaquenil?

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