Sjogrens diagnosis
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Hi, I don't know where to start. Looking back on my teenage years I think I had dryness issues then. I had severe dandruff in my scalp and eyebrows which went away on its own. I had periodontal disease which used to come and go and because of that I lost a lot of bone and therefore lost a lot of teeth. I started experiencing joint pain in 2000. It was roaming pain in the joints and tendons. Of course I was diagnosed with fibromyalgia. No disrespect for people with fibro but it seems fibro is over diagnosed. In 2004 my lips became dry and burning and shortly after experienced dry mouth. My tongue used to turn white. Over the next few years my eyes and nose got dry. I had a lip biopsy which was negative for Sjogrens. In 2007 I went to a Sjogrens clinic and saw the rheumatologist who heads the clinic. I also saw an optamologist associated with the clinic. After a thorough exam I was told I didn't have Sjogrens. My bottom tear ducts doesn't work and this was causing my dry eyes, which wasn't severe. Over the next few years these symptoms continue to wean and wane. My tongue was so dry at times that my teeth rubbed of it when I spoke or ate. There were times I couldn't eat food due to lack of salvia but the symptoms went away. In 2011 I was diagnosed with idiopathic purpura. They again did every type of blood work but nothing showed. In 2013 I was diagnosed with lichen sclerorous. In 2014 my knees and hand became inflamed and swollen. Finally my blood work showed elevated esr and crp. Rheumatologist prescribed prednisone which helped but I flared when trying to wean off it. After 2 years I finally got of prednisone by weaning off very slowly. My joints have been good since then and all my blood work over the past 3 years are perfect. My last test showed an esr of 2 and Crp of 0.8. I've been tested for everything. I have a negative rf factor, Ana and the two s markers for Sjogrens. My last bad flare was in early June of 2016. This was a dryness flare with little joint pain. Every time I get a dryness episode the symptoms are worse than before. I vacationed in Florida in May of this year and in October finally did my bucket list trip and went to Hawaii. It took over 30 hours of travel to get to Hawaii. I never had any issues with dryness or joint pain. Three weeks after returning home I had a rash on my arm which turned into a bruise and I could feel the dryness kicking in again. I then developed a large rash on the back of my leg and several on my arms. Dematologist thinks it's Vasculitis. Waiting on the biopsy results. Anyway my dryness kept getting worse and now it's the worse then I've ever been, dry and burning tongue, throat, palate and lips. Finding it difficult to swallow food. Lymph nodes in my groin and arm pits are hurting to name a few symptoms. I always feared I had ss but with the symptoms coming and going over such a long period of time I didn't know what was wrong with me. I have been using alternative medicine, homeopathic, acupuncture, naturopath to name a few. Anyone have a similar journey to mine. I'm so bad right now that I just want to die.
0 likes, 6 replies
Tumtum1963 betty29240
Posted
Hi Betty. I’m so sorry you are in such a bad place with your possible Sjögren’s. I’m based in the UK so can’t advise on how to go about getting a diagnosis but I will say that autoantibodies can change and so can biopsy results. Also no one person presents the same with any of these connective tissue diseases. There are forms of Vasculitis such as Behcets which can present very similarly to Sjögren’s and vice versa. So please keep battering at your doctors doors for testing and ask for treatments for the dryness such as gels and saliva stimulants. Don’t give up or despair - many are left in no man’s land for years and I think the hardest thing to cope with but at least you aren’t alone.
betty29240 Tumtum1963
Posted
amkoffee betty29240
Posted
You don't say how old you are but I'm wondering when you were on the prednisone did they tell you why or what disease you has it they were treating prednisone? I'm asking cuz it sounds like you had polymyalgia rheumatica. And not that that really has much to do with a dry mouth I just wondered because I have that disease as well. And both PMR and SS are autoimmune diseases. When you got the rash on your leg and even the one on your arm did you have any kind of joint pain or inflammation? That could indicate psoriatic arthritis. The dermatologist that thinks you have vasculitis, I suspect she's probably right. It is very common with PMR. I think from what you're talking about that you would benefit from prednisone again. It might be worth it to ask your doctor to put you on a prednisone pack ( start with a high dose and then taper very quickly until your done) and see if you get any relief that way.
betty29240 amkoffee
Posted
I'm presently 60 years old. The rheumatologist tells me I have some type of inflammatory arthritis but doesn't know which one. The dermatologist wanted to put me on 40mg of prednisone for a month but I declined as it took me so long to come off it the last time and it also gave me severe osteoporosis in my spine. I'm trying to get in to see my rheumatologist to see what he advises me to do. I should get my biopsy results in 2 weeks. I will research polymyalgia rheumatica. Thanks for the information, much appreciated.
aitarg35939 betty29240
Posted
Hi Betty
All the pain is awful, am sorry that you have it. As to the fibro diagnosis, at least here in the States it was extremely trendy with docs for a long time, something new to point at to shut us up. Tho I'd been diagnosed with SS for 10 years, in '03 or so my go & her buddies all decided that they knew more about AI diseases than my specialists. At their insistence I went to a support group twice. I simply did not hurt in the way those women hurt. I have much much more joint & muscle pain now than then -- hello! much much more white hair, too, with intervening 14 years -- still, I do not hurt in the way those fibro women hurt, which sounded terrifying to me.
I know that you are going the natural route but I've just had confirmation from my dentist that taking evoxac for mouth dryness can pay off. If you consider it, just know that there's a huge difference between how it's given here & in the UK. Over there, they give out daily as much as I take in a week or 3. Docs here would start you on 30mg daily, might increase to 30mg 2 or 3 times daily. For your teeth it's most important to take at bedtime; to eat, speak and be comfortable, daytime pill. I can't take the 3d pill for much of the year here as it's too hot and my head sweats so much on a 3d pill that people ask what's wrong. Very few insurance companies will pay for a 4th daily pill. Just consider it. If reading complaints online, take into account whether they cone from the UK because if I was on 400mg of evoxac daily, I'd stop before going insane from sweating.
betty29240 aitarg35939
Posted
Yes I agree with you about the fibro diagnosis. I left my GP of 25 years because she insisted all of my symptoms were fibro related which I knew it didn't have it. When they don't know what is wrong with you they say you have fibro. I'm from Canada and we have salagen. I've been on and off it for approx 12 years. Like I said my symptoms come and go and I haven't found anyone with similar symptoms. The Drs say I'm a mystery, complicated and complex. In other words they don't know what is wrong with me. Sometimes the salagen works and sometimes it don't. I'm prescribed 5mg 3 times daily. I can take a pill and get saliva and the next dosage it won't do anything. I think I am complex! Lol. Thanks for sharing. Appreciate all the responses.