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09/15/2011 04:46 PM

Need some Sjogren's expert!

paperbagprin
paperbagprinPosts: 102
Member

I'm 21 years old and my symptoms have been troubling me on and off for years, but in the past year, I've been having a flare up of something. My symptoms, sore, swollen (at times) joints, fatigue, dry eyes, dry mouth, vascular rashes, Raynaud's, nose ulcers.

I have a weak positive ANA and on two occasions an elevated ESR. My ENA (including La and Ro tests) were negative. My Schirmer was also negative! But the ophthalmologist said he could not explain that because I have very dry eyes.

I'm waiting to see a doctor who specializes in dry mouths, but my rheumatologist said it's just Fibro and wanted to give me amitriptyline. I said no (I'd tried it before with no success) and also read that it make dry eyes even drier.. The rheumatologist said that Sjogren's is very unlikely, the ophthalmologist said I definitely have some degree of Sjogren's and wanted to put some plugs in (I said I'd go with artificial tears at the moment)

I don't know who to listen to or what to do. I really just want some relief, mostly from the fatigue and joint pain.

Next week I'm having a bone scan done, I'm meant to be having a punch biopsy of my rash and I'm waiting to get my appointment to see a dentist who specialises in dry mouths. The rheumatologist said she would consider trialing me on Plaquenil for 3 months (even though I've read it can take up to 3 months for it to kick in) but only if the bone scan or punch biopsy shows something (and she said she doesn't think it will).

I did go on a course of Prednisone for 1 month which helped everything. My dry eyes and mouth dramatically improved and my fatigue and joints and my nose ulcers disappeared.

Does anyone have any advice? Does it sound like Sjogren's is still a possibility? Would Plaquenil help the dry eyes and mouth or just the joints and fatigue?

Thank you.

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09/16/2011 05:54 AM
sjofrown
 
Posts: 35
Member

Hi, sorry to hear about your ills. I do feel as if Fibro and Sjogren's are sister diseases or related. I had Fibro or chronic fatigue for years before a positive test for Sjogren's came. I think that the body goes through a series of cycles starting with chronic fatigue, then Fibromyalgia and now Sjogren's syndrome. Now, my Sjogren's is acting like Lupus! Unbelievable huh? Well, these disease are progressive. You're a little young and I would NOT start on the drugs until a little later if you can help it. If absolutely necessary, start with the lowest dose posible to combat plateaus in effectiveness. I suggest staying really close to your rheumy because something is bound to show up soon. I was told that these disease can manifest themselves eventually therefore an eval every six months is good. I know that you're dealing with a lot, just hang in there a diagnosis is sure to come. Here's an air-hug!Smile

09/17/2011 09:36 AM
twistedDNA
twistedDNA  
Posts: 1162
VIP Member

paperbagprin, welcome to the group. Sorry to hear you are having so many problems at your age.

One of my first symptoms was dry eyes and I saw a ophthalmologists when I was 23 (over 30 years ago) and he did not check my dryness with the schirmer test and I don't even know if they had it back then (1979). He told me to use drops and I did but later had problems with the preservatives but of course now you can find preservative free drops. I also use gel or genteal night-time ointment before I go to bed at night.I wear sunglasses and protect my eyes from warm air and air conditioning.

I have the plugs and you can 'try' them out to see if they might help you as they have temporary ones that dissolve over a two week period,

My current ophthalmologists treated me for episcleritis in my left eye last January and she told me she believes I have Sjogren's as this is an autoimmune related condition.

SSA and SSB was negative but I found out at least 15% of people with Sjogren's do not have this antibody. My ANA titer last year was high and this year its low. I also now know that that is due to our immune systems trying to do their job. You can be tested every month, every year and it will fluctuate.

I'm on no drugs other then gabapentin for nerve pain. I cleaned up my diet including eliminating gluten and it did help especially the brain fog!

My body aches, nerves, bones and muscles still persist but change with their intensity on a daily basis.

I too have a nose ulcer and my nose would bleed almost daily until I started using saline spray in my nose I also use antibiotic cream on the lesion a couple of times a week to 'try' to keep it from scabbing over and bleeding. When I stop it comes back as its persistent Angry

I use all the bio-tene products for dry mouth, toothpaste, mouthwash, gel and spray. I chew xylitol gum daily to get the saliva flowing.

I also have Raynauds and rashes on my face, neck, ears, scalp and chest. I use metro gel on my face and it definitely helps with that rash. I was originally diagnosed with Rosacea and that's how I discovered the metro-gelWink

I try to pace myself to deal with the joint, bone, muscle and nerve pain.

I have been to 3 rheumatologists and given 3 different diagnoses. I feel there just is not enough information in the medical field for us UNLESS you go see a specialist in Sjogren's. Not too many of them!

Post edited by: twistedDNA, at: 09/17/2011 09:39 AM


09/18/2011 06:36 PM
Mariah13
Mariah13  
Posts: 198
Member

Welcome to the group,

My sjorgren's was just recently sort-of diagnosed. My rhemy diagnosed me with UCTD (Undifferentiated Connective Tissue Disease) which means that I have some (but not all)of the characteristics of several autoimmunes diseases (lupus, sjogrens, fibromyalgia, etc., etc.). I asked him if it made a difference in the treatment options. He said no, that the same drugs are used to treat them all. He started me on plaquenil and prednesone, but explained that he could not keep me on cortisone for too long due to adverse effects. As I was being weaned off the prednisone I got a massive case of Shingles, which the GP said may have been made possible by the cortisone since it lowered my immune reaction.

One year later I am still taking Lyrica due to the post herpetic neuralgia (damaged nerves) from the shingles. But the good news is that after three months of starting it, the plaquenil took away the joint pain and fatigue. Yes, I still have the dry mouth and dry eyes and sometimes the itching spells, but they are controllable with drops, mouthwash, and ointments.

Thankfully I have not had to take steroids again or any immune suppresants. I consider myself lucky. But, as you can probably tell by now, all os us are different, have different needs, and rheumatologists just do the best they can with a group of diseases that mimic each other. It's an art rather than a science!

Good luck to all of usTongue

Post edited by: Mariah13, at: 09/18/2011 06:37 PM

Post edited by: Mariah13, at: 09/19/2011 08:09 AM

Post edited by: Mariah13, at: 09/19/2011 08:10 AM


09/19/2011 08:12 AM
Mariah13
Mariah13  
Posts: 198
Member

Hey, I have tried to edit my post, but it won't take! When I wrote "cortisone" I meant to write "prednisone" -- it's part of the "brain fog" that also comes with the territory!Dizzy

Post edited by: Mariah13, at: 09/19/2011 08:13 AM

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