Hi all--Just Dx 1 week ago. I have had arthritis in the DIP joint (the one closest to tip of finger) in several fingers for a couple of years and just ignored it (my reason for ignoring it was--what can you do? I'm 56 years old, life happens) until it started affecting my work. So, I made an appt with a Rheumatologist, got blood work and x-rays of my hands. ANA was 1:320, RF and sed negative, fingers showed non-erosive arthritis consistent with osteroarthritis. So-- Dr said this arthritis is unusual to be only these joints and that lab results point to auto-immune disease, most probably sjogrens. I will have more blood tests after 3 months on plaquenil (200 mg a day) to check the SSA and SSB antibodies. Plus Vit D.
So now I am thinking a lot of symptoms I have had may be related to SS and not just "maturing".
1.Watering eyes--recent eye exam showed dry eyes;
2. But the big one is Dequervain's tenosynovitis (inflammation of tendons from wrist to thumb) , happened all of a sudden, got cortisone shot and ok for 6 months and now it has returned. The rheumy put me on methypredisone for 5 days due to the SS and it was wonderfully better, then back to horrible when I stopped. . I would love to hear anyone with this--especially treatment options. Hand surgeon mentioned an operation to cut the sheath that the tendons go through--but since it may be related to SS maybe recommendation is different. I will not do surgery unless it is only option as it may be a career ender.
3. Hair loss--for about 10 years--but just keeps getting worse, now it is noticeable, especially the hair line at temples, SIGH--this is my worst one--this makes me look so much older. Double sigh.
4. Hot/cold--but I still think this is post-menopausal. I kept asking Drs to look for thyroid cos of always cold and hair loss but it always comes out ok. ( Ithink 3?)
5. Dry nose, kept getting a sore in it that improves if I put vaseline in my nose (gross)
6, "frog in my throat" in the morning, with lots of clearing my throat to get it out, suggestions, anyone?
7. oh, and ever since I was about 35 years old I have had a problem with vasovagal syncope, so Gi distress means clammy, feel like I am going to die, have to get down on the ground pronto or I faint, and sometimes I faint even laying down. I am used to it, when I feel bad I just drop to the floor.
8. Loss of energy (my house has never been so messy in my life, I just stare at it while I sit in the room and say, I really ought to do something---Not!) I just call myself lazy!
Well, life's not so bad so far, I did learn that when the Dr said take the Plaquenil with a meal it also means don't wait 10-15 minutes after a meal cos I learned really quickly my husband realllllly loves me cos he took care of me with the side effects of extreme GI problems.
So, I thought it was interesting that the arthritis in my fingers led to a diagnosis of something completely different than what I expected (oh, and wanted!). I am going to focus on the positive and hope I am a person with minimal problems. No one in family has auto immune problems except my DD with hypothyroid.
Hi JeanFour and Welcome to Sjogrens World!
I would double check with the doc on your labs...I thought that they usually checked the SSA and SSB when the ANA came back positive for autoimmune and I believe that 1:320 is when they start to consider the test positive. Maybe I'm wrong...but that was my experience.
Anyway, please read all you can here as there is a lot of valuable information and support in these posts and there are also people here who understand! The people who come here are from all over the world and are at different stages in this and are willing to listen and help each other in any way they can...that is what makes this place so very special!
As far as the tendons in your hands, have any of your docs offered you physical therapy? I have a lot of tendinitis problems and with some of the more severe cases PT was very helpful to me and I was able to avoid surgery. Just a thought!
Another question about your thyroid...what lab tests are they actually running? There are more than 1 type that they should be checking on....but most docs just run a TSH and are done with it....and some people need to have much lower numbers than others. I'm sure others will be by soon with much more knowledge on thyroid tests and issues than I have to fill you in some more.
The frog in your throat and constant clearing....I have that too due to dryness....I take the prescription salagen when needed to give me saliva and also sip LOTS of water. There is another medication called evoxac that some people take here to help with dryness of the mouth too.
Come back here often....read a lot and again....welcome!
Let's see--the ANA screen was positive at 1:320 atypical speckled; she is going to do further tests in 3 months for SSA and SSB. She said this number was definate for auto-immune problem. She was also considering psoriatic arthritis but I have no skin lesions. The non-erosive nature of the arthritis eliminated a few other diseases --I can't remember their names. I am sure that actual diagnosis is an evolving situation.The dry eyes certainly are consistent with SS. I absolutely have tears running down my face and have to pat them dry unless I use my eye drops.
Thyroid was TSH 3rd generation w/reflex to FT4 and came out 2.05 where normal range in .4 to 4.5 mIU/L-- I have no idea what that means.
I am doing cold laser therapy for the tendonitis through PT but that was on my own cos I know a PT, I started it the day I started methylpred , now that I am off the pred, pain is all coming back, so I don't know yet if the laser will help at all. I do cold packs when I think of it, maybe 3x a week. i wear the brace with the thumb at night cos if I twist wrist wrong it hurts sooo bad. I guess I will return to hand surgeon for his opinion
I plan on lurking a lot for info here. Thanks for the response.
Hi JeanFour,
Let me also welcome you to the SJS World and family! Like Lynnmarie says, please look around the board, and if you can't find it using the search engine, don't be shy and ask as there is usually someone about that just might be able to help.
Yeah, I know what you mean about the joints closest to your finger tips, as three of mine (on each hand) are driving me to distraction (my sed rate is elevated, and has been for several years now). What is your doctor having you take for them?
You mentioned that your thyroid is always tested, and comes in at around 3.00 or so? My question to you would be how do you know that that rate is right for you? I ask because mine ran close to 5.00 and I couldn't get the GP to even consider hypothyroid even though I had all the classic symptoms (and she was using the old .05-5.50 scale instead of the current .03-3.00 scale). I feel better when mine is slightly under 1.00, and start to feel miserable when it gets above 2.00.
Oh, and by the way, you're exhausted, not lazy!!
Again, welcome and I hope that I can chat with you soon.
Take care of yourself now -
Patze
Hi JeanFour - welcome to your new Sjoggie family.
I bet that was a shock for you to go to the doctor for one thing and learn you have something else too. :o Although, like you mention, some of the things you list and thought were just aging issues do fall into the Sjogren's categories. I know for myself, that when you notice things happening to our bodies, we just tend to think, that's the way it's suppose to be. Until we learn later (some times many years later) that it's not "normal" and is really a part of some wacky autoimmune disease called Sjogren's Syndrome!
Like Lynnmarie mentioned, there are members here from literally worldwide, young, old, single, married, divorced, widowed, female, male, those attending school, those teaching in a school, retired, on disability . . . . the list goes on and on.
If there is a certain topic you are interested in, if you put that in the "search" box to the top left of this page it will take you to previous threads about that topic.
Do you have a humidifier in your bedroom? Many members have found that helpful to put some added moisture in the room to help with the dry nose, throat, eyes, etc. I have a cool mist humidifier and I really like it.
There are a lot of products out there - both OTC and prescription to help with our Sjogren's symptoms. Many times it's trial and error to see which products we like best. All a matter of personal preference.
There are also several good Sjogren's books on the market. You can go to the Books/Reviews link at the top of the page to see them. If you decide to buy any, if you order through Amazon.com and go through our website, our group gets a percentage of the sales. ;D
Welcome to the family - I hope you find this site useful to you. We also have "live" chats several times during the week - the schedule is listed under the Chats link.
Bucky
Thank you for the warm welcome Bucky, Patze and Lynn Marie! I looked at humidifiers and its a bit confusing--warm/cool/ultrasonic/silver germ killing etc.
So Patze --we are finger twins? I guess the plaquenil is for it? and I take advil. Was it an early symptom for you?
Hi JeanFour,
No, the finger thing has only been around for a year or two, while the rest of this mess started about five years ago. The plaquenil hasn't helped it much, so I don't know what the heck it is, but I guess I'll ask the rheumy again when I see him in April (I take Tylenol & aspirin).
Oh, and I use cool air humidifier because it's easier to keep clean (I can work some long hours, and I can't remember worth garbage anymore either, ugh). I have enough problems remembering to change the filter on my CPAP machine weekly. ;) :)
Patze
Hi Jean four, I have had all these things . The DE quervain's tenosynovitis I had back in April 09 and still have problems off and on. I wore a soft some what flexable brace during the daytime. At night I sleep in a custom made brace that my occupational therapist molded out of some kind of plastic. The first time I put the brace on the pain instantly went away. I have not done injection as they never have done me much good. I also had trigger finger in one of my pinkie fingers. I ended up having surgery on the pinkie and continue too still have problems off and mostly on with that finger. Doctor did not want to do surgery on thumb at this point because I do get relief from brace and that is ok with me. Good luck I hope you find some relief . I know how bad this can feel and pain is just constant.
Louis--thanks for reply--when/who did they recommend custom brace? Did insurance cover? cost? Do they take a mold of your hand? And what do you do for the skin under the brace, mine is getting sore, I slip a kleenex underneath but even that is hurting.
I use a brace with no thumb included at work and do very well, (it doesn't hurt unless I move it the worng way). I use a brace with thumb most nights unless I think i need skin relief. I don't wear brace any other time unless I am doing harder housework--to give skin a break and allow muscles to keep healthy. Sometimes just hanging up a light blouse in the closet hurts, or I turn it wrong and I drop my coffee cup.
I just thought of another problem I had about two years ago--frozen shoulder--PT people were amazing and it is 95% better, but wow that PT can hurt, I never realized what they meant by "xx months of grueling physical therapy" until I had 1 month of it.
Thanks again!
I am wondering why they are waiting for the SSA and SSB tests, if there is a positive ANA, especially speckled.
Then again, the first rheumy I saw, I had been referred for that very reason. He was very solicitous, felt all my joints (hurting but no swelling) gave me lab orders, and told me to come back in 6 months. I have no idea what he was planning to test for, since I wasn't feeling terrible, and his office is really far, and I never went back, and I think I tossed the lab order months ago. He did say that based on my symptoms, it wasn't RA or lupus, but he was going to test me to rule OUT things.
I am starting to think that it's a good thing I have a new doctor. She has an office 2 miles away, and wanted to see me immediately. I go on St Patrick's Day.
Now I know that my achy little finger tip joints ARE part of this experience. This is a great place to learn.
Interesting that several of us have the last finger joint arthritic. I assume I am waiting on taking the ssa/b test results because she is fairly sure of the diagnosis, so she doesn't need the info right now and wants to check on my blood results in 3 months after plaquenil therapy anyway. I figure she is saving me the needle stick. And/or plaquenil would be the correct treatment for whatever subset of auto-immune diseases I have anyway. BTW, she took my blood because staff was busy and I have never had anyone take it as good as she did--absolutely painless! So I certainly admire her phlebotomy skills! I will let you all know if there is any special treatment she suggests for the fingers (but I suspect none)
Louise--I wanted to THank YOU so much for mentioning a custom brace. I called a company in town that does them and today I spoke with the girl that makes them-- I bought the little stockinette fabric to place under mine for now and I plan to have one made for work-- then later if I like it I'll make one for night. She added a little padding just in back of the place that hurts when it touches the side of the brace so it is raised over the sensitive spot. She says they can make a bump out area for that spot on my custom one. I wudda never thought of a custom one so this is FANTASTIC!!! THANKS AGAIN!!!
Jeanfour,at the time my thumb started bothering me I did not know I had sjogrens. I had 3 surgeries ulnar nerve transposition, carpal tunnel release and trigger finger release I have been a hairstylist for 30 years so I went through work comp because my doctor told me it was from my job. I did not learn I had sjogrens until I was done with therapy. So the brace was paid for by work comp. My rheumy said it was partly due to my work.Anyway the brace is like a plastic they heat up then put around your thumb and mold it around. My skin did get a little irritated. I have these like sock things that slip around the thumb that go under the brace. It is like a real thin ace bandage type thing. Also the brace they made for me has lots of little wholes in it so my problem was having these little circular spots on my skin that get irritated if I don't wear the sock with it.I have shoulder issues off and on in therapy they showed me exercises to strengthen it up and it has helped a lot. I hope this was helpful. If you would like I could call and ask for the name of the materials that the brace is made from .Not sure if I described it well enough or not.
Yes, they showed me the material and it was white with little holes in it. Looked like peg board to me. I wonder if the decision on your surgeries would've been any different knowing auto-immune problems? I am determined to have no surgeries because I am afraid it would be a career-ender as I work with my hands, too.
It definitely helped my elbow but now my other elbow is doing the same thing. As for the carpal tunnel I was not having any problems with it but my nerve conduction test show I had a bad pinched nerve there. The doctor said I might as well do it at the same time I did the ulnar nerve. As for my trigger finger in my pinkie I don't see that it has helped any. I often wonder if it is just acting like it does because of the sjogrens. My rheumy said he has seen a lot of hairstylist with ulnar nerve and trigger finger and the thumb issues. So it is hard to know what is what. He said it was more my job but I'm not convinced. I did not mention to work comp doc because it was after I found out .I guess they would have used that info as an easy out for their responsibility I think it is probably at least 80% my work as most of it hurts more on days I do work. I could not have chose a worse proffession for this disease. I suffer from constant joint and muscle pain . Pain is always worse on work days. I have 2 days in a row off and it settles down a lot then. But I love what I do and am not ready too quit . I will just keep up as long as I can. My employer has been great with letting take breaks as needed and giving me time off as needed I have changed my schedule 3 times now trying to find what will work best for making money and not over doing it. After reading others post about their employers I think I'm pretty blessed.