Hey everybody, new to the site! Here's my story - Started having dry eyes and sinus problems about 10 years ago and had two sinus surgeries. Started having fatigue and dizziness issues along with shocks in my legs and feet. No answers! About six years ago started having severe muscle pain and severe cramping and neuropathy along with extreme fatigue. I also have skin problems especially dryness and my parotid glands would swell and have pain every so often. No answers, but doctor said he believes it is fibromyalgia and prescribed medicine to control the pain. Last year I decided to do a short distance triathlon which I completed but during training cramping put me in the ER twice. Family history includes Mother who had ongoing autoimmune disease and passed away from colon cancer, sister who has severe crohns disease. I am a really active person who loves to play and coach baseball, hockey and softball so I wanted more answers. I made an appt. at a big hospital in Chicago and blood work showed positive ANA, anti-double stranded DNA and high SSB numbers, schirmers test 6ml both eyes and eye exam showed moderate dryness and I am having a lip biopsy next week. The doctor has diagnosed me with Sjogrens and is doing the lip biopsy just to see. I see him again in two weeks and he is going to start me on Plaquenil. My question is this medicine going to control the disease and help with the Neuro and muscle pain also? I can handle the dryness but this nerve, muscle pain is horrible. How long after starting the Plaquenil did you feel better?
Tim
Welcome, Tim.
Sorry you have to be here, but this is a wonderful place for information, support, laughs (yes!), and complaining (we do a bit, now and again).
Why do you need to have the lip biopsy?
Once you have time, add your conditions and medications to your signature line. It helps people to know what you're dealing with and how you are approaching things.
Keep us posted.
Hugs
Elaine
Welcome, Tim! I just wrote a post the other day about my journey with Plaquenil, so I'm going to copy-and-paste it here:
I have been taking Plaquenil for about a year and a half, and the difference in my quality of life is HUGE . It took about 4 months for me to start noticing a marked difference, though, and a good year before I had the full effects. For me it was a miracle.
I do have to take it along with my largest meal of the day -- supper -- and I take it with a bite of my food because otherwise it'll burn my esophagus. (Reading about other people's experience makes me wonder if it's because I use generic. The brand-name has a thin coating.)
My rheumy warned me about reading about it on the internet because he was afraid the list of side-effects would scare me, which it did. (Of course, I read all about it anyhow!) But my life was such a misery that, quite frankly, I didn't care.
I do see my optomitrist every six months for a field of vision test to check for eye problems. Rheumy said his practice has several hundred patients on Plaquenil, and only one person who's ever had any eye problems. And as I've said before, as sick as I was, I'd really have to do a lot of long, hard thinking before deciding to quit the Plaquenil, even if I had problems with vision.
Hi Tim :)
Welcome to Sjogren's world. Many people find that Plaquenil helps a lot.
I hope you find the site useful. You will certainly find it helpful and supportive.
Take care - Scottie :)
Hi Tim and welcome!
I am one of those that has not tolerated plaquenil very well. I only take 100 mg every other day. I take it with breakfast because it gave me nightmares when I took it in the evening.
I have been on it since Feb/ march and have noticed slight improvement in the fatigue and joint pain.
Lots of the very kind people here recommended to increase the milligrams slowly when first taking the medication.
Hi Tim
Welcome aboard! There are several male members of a similar age to you, so hopefully, they will come along and welcome you.
I've been taking generic Plaquenil for around 15 months and, like Abbey, find it has made a huge improvement to my life, particularly with the joint pain and fatigue.
I'll be interested to hear how you get on with it.
Kathyx
Hi Tim,
Let me also welcome you to the SJS World and family! I'm sorry to have to meet you this way, but I'm sure glad that you've found us!
Please look around the board by using the search engine in the upper right hand side of this page (theres a wealth of information on tons of topics).
I've been on Plaquenil for six plus years now, and it took right around 5-6 months to start to work. I know that if I miss a few doses, the exhaustion starts to creep back (it can take a week or more of taking the med to get back to "normal").
I know what you mean about the nerve pain, but with me it can strike anywhere and it seems to lately occur around my face...so not fun! :( Whew, even with Lyrica it still causes me grief (like this morning, oh my, part of my lower jaw still hurts).
I too am curious why the doctor wants to do a lip biopsy after you've already had positive blood work for SJS?
Hang in there and take care of yourself -
Patze
Tim,
I live on the south suburbs of chicago, il. Which hospital did you go to in Chicago ? I have an appt at University of Chicago Rheumy dept. in December. Did you go here ?
Quote from: A66eyroad on September 29, 2011, 10:09:27 AM
Welcome, Tim! I just wrote a post the other day about my journey with Plaquenil, so I'm going to copy-and-paste it here:
I have been taking Plaquenil for about a year and a half, and the difference in my quality of life is HUGE . It took about 4 months for me to start noticing a marked difference, though, and a good year before I had the full effects. For me it was a miracle.
I do have to take it along with my largest meal of the day -- supper -- and I take it with a bite of my food because otherwise it'll burn my esophagus. (Reading about other people's experience makes me wonder if it's because I use generic. The brand-name has a thin coating.)
My rheumy warned me about reading about it on the internet because he was afraid the list of side-effects would scare me, which it did. (Of course, I read all about it anyhow!) But my life was such a misery that, quite frankly, I didn't care.
I do see my optomitrist every six months for a field of vision test to check for eye problems. Rheumy said his practice has several hundred patients on Plaquenil, and only one person who's ever had any eye problems. And as I've said before, as sick as I was, I'd really have to do a lot of long, hard thinking before deciding to quit the Plaquenil, even if I had problems with vision.
From what I've read. You really need to have an eye doctor who knows what to look for when examining your eyes. Though, I've read you can still have toxicity even though you don't have the bulls eye. So, I guess you can have vision changes that doesn't show up on an eye exam.
If I'm able to get a diagnosis and treatment. I think I'm going to try something other than Plaquenil. As I believe there are several other medications to treat the same things as Plaquenil. As I had be doing alot of reading and seeing people talking about their vision rapidly declining. Even in a 6 month period.
I think the scary thing is the eye problems can be permanent. As I've read that once the damage is done, it can't be reversed.
I've read the lip biopsy can/will leave a permanent numbness spot on your lips. The test appears to be controversial. I've read of someone testing positive on the biopsy, but their doc still say they don't have Sjogren's. And some docs say the lip biopsy isn't real reliable.
Hello Tim,
Welcome to Sjogren's World! :D
I think you'll find this forum and site a warm and welcoming place, full of information, encouragement and support. As Elaine stated, we are here for one another for a complaint, laugh, and everything in between. You'll find many helpful, friendly people here who understand the journey it sometimes takes to be diagnosed, and how to manage your symptoms.
Many of us can relate to the muscle and nerve pain you're experiencing. Muscle aching, burning tingling in my knees and legs especially. I have been taking it for 5 months. Everyone seems to see different levels of benefits, but mine has been remarkable. I would say on a 1-10 scale, (10 being worst), I was at a 5-7 most days with stinging, burning pain and now at an average 2-3. I have some, but it is manageble. I saw less pain after just a week or so, but for some, it can takes weeks to several months. It also is a DMARD (disease-modifying drug) so is known to help with slowing the progression of disease.
In regard to eye issues and Plaquenil, I would suggest to ask your doctor and opthamologist. I am not a medical professional, but information shows there is a very small percentage of people who may have vision problems on the drug as far as damaging the macula. All my doctors have told me this is extremely rare. They usually ask that you have a thorough eye exam as a baseline before starting the drug, and many of us have an exam every 6 months just to keep check. Of course, if you experienced any eye problems you'd want to see them sooner.
Hopefully, others who have had a lip biopsy will post their experiences. I've personally not had one since I was diagnosed and didn't see the reason to. There is a bit of debate on whether it's necessary or not. Some rheumatologists seem to insist on doing one, others don't see the need if you are diagnosed from blood work and symptoms. It's ultimately up to you whether to have it or not, just as all your choices of testing or treatment is up to you. Again, it may be best to speak with your doctor to see what their views are and then you can make your own decision.
Hope I didn't overload you with info! ;) Again, welcome to the site. Please keep us posted and we look forward to hearing more from you.
Take care,
Melinda
You have enough to prove you have sjogrens, you dont need a lip biopsy..I would tell them..no way, just my opinion.
Start with the plaquenil and go from there....first line of treatment. I felt better right away on it, some dont notice any difference?
hang in there....sounds like you have some good doc's though.
gursie
Hi Tim,
Welcome!!!
Plaquenil usually helps with joint pain and fatigue...some cases it even helps with dryness. But Meld256 is the first I've heard of it helping nerve pain or that it worked in just a week (it usually takes months). Her results are probably not typical, but it can't hurt to be optimistic that these will be your results.
Although Plaquenil does have the risk of eye damage as someone brought up, it is extremely rare and I've inquired with several ophthalmologist I've seen at Hopkins, and they have never seen it happen. The doses we take for autoimmnue diseases are much less then what it was originally designed for (malaria).
The lip biopsy is an effective tool for diagnosis, but does have some risk for numbness, etc. Although I have both a small knot and numbness, I don't find them bothersome at all. However, you have positive SSB so not sure why they want to do the biopsy also....unless they are documenting cases for research (Hopkins Sjogren's Center patients (all) must have a biopsy).
Sounds like you were diagnosed quickly which will be beneficial for you in the long run (diagnosis can take years in many cases) and maybe the plaquenil will help slow progression before it get too far along and you can resume some of your normal lifestyles.
welcome Tim.
My doctor did explain that sometimes the biopsy is negative even with a positive diagnosis from the blood work. I guess maybe his or the departments standards are to include the biopsy as diagnosis. The first time I seen him was before the eye test and just had the results of the bloodwork. I first seen a Neurologist because I could not take the pain anymore and sick of pain meds and not knowing what was causing the pain. I told my internal doctor who diagnosed me with fibromyalgia I wanted more answers and hopefully can get a diagnosis. He said he's not sure if anyone could figure it out and meds are probably the only thing that will help. So I made an appt with a Neurologist. She ordered lots of blood work, about a week later she called and said I need to make an appt with a Rheumatologist because of my blood showed autoimmune disease like Lupus. The first visit at the Rheumatologist is when he said along with the positive antibodies the high SSB numbers screamed Sjogrens not Lupus. He then ordered the eye test and lip biopsy and said he would like for me to start the plaquenil in about 4 weeks. He gave me a pamphlet about plaquenil and sjogrens and said that I should research both. The more I researched it and reading the posts in the forum I now understand what I've been going through. It never occurred to my internal doctor or other neurologists that it could be an autoimmune disease? Did they run this bloodwork before at other hospitals I ask myself or maybe it just didn't show up. All I know is that I am relieved I have a diagnosis and will be treated. When people or family ask what's wrong because of the pain and you have no answers you feel crazy. If they could feel this for just seconds they would understand. Looking back in history did this disease cause other illness I had. When I was 10 I was hospitalzed for pain and weakness in my legs so bad I could not walk. I seen my family doctor for hip pain at night since I was 12 but no answers. I had pancreatitis twice about 10 years ago unexplained. I've always been very active in many different sports and to go from very healthy to now it was like night and day.
I'll call today to see if I really need the biopsy.
Hi TripleC, my doctor is at Rush University.
Tim
Definitely. Skip the biopsy. You have more than enough evidence to show you have Sjogren's.
Calli
Hi Tim,
With your double stranded DNA..sound like you might have lupus/SS thing going on. I have them both and also have the
horrific neuropathy you describe, as many of us do. Ive yet to find something that works well for me on this..i cant seem to tolerate all the medications very well.
Sounds like you have a good Neuro..funny, all these docs all say "Fibro" when there are no answers. I wonder how many people with
Fibro actually have undiagnosed autoimmune or hormonal issues? Do they not teach this in medical school? Im really getting tired of educating people on this and how severe these diseases are...and that SS is much more than dry eyes/mouth and some fatigue.
Start with the plaquenil and go from there. Hang in there...your on the right path now!
Gursie
I talked to the doctor about the lip biopsy, he said that it should be done based on the schirmer test only showed moderate dryness. Even though autoimmune antibodies are present only the SSB not the SSA was positive. So Based on ANA, doulble stranded DNA and SSB all positive he still want's the biopsy. He said we will still start on the Plaquenil even if I have a negative biopsy.
So how bad can it be?
Tim
Hi Tim,
Glad to see that you have some really on the ball docs, and I've found that that is half the battle with AIs! Lucky you! :D
About the lip biopsy, I'll spare you my story as its been posted many times (use the search engine and type in lip biopsy....you'll find a ton of stories about it there). I will mention that most members that have had it done have little to no problem with theirs, ever, and others were not as lucky (like me).
If you can't find what you're looking for there, don't be shy and ask away as there is usually someone about that just might be able to help.
Take care of yourself and I'll keep the fingers crossed that your biopsy goes well -
Patze
Hi Tim,
I've worked in Ophthalmology since 1988 and a retina specialist in the practice said he's not seen one permanent eye condition using plaquenil during his long work history. The doses given now are so low that the bullseye maculopathy is almost a thing of the past however, your cornea needs to be examined for Plaquenil deposits. I'm not sure (long-term) if the deposits cause any damage...I don't think so and don't believe they negatively effect your vision. I would think if there was an unusual amount the eye doc may make some suggestions to your rheumie but the docs I've spoken with feel plaquenil is not as big of a problem as it was years ago. Your double stranded DNA test also makes me think of something other than SS. Glad you're happy with your results and your physicians. Hang in there! Jill
Tim, Welcome to the site. It sure is suspicious for sjogrens, that is for sure. Especially with the pancreatitis which can show up with autoimmune disease. Sjogrens affects the organs that secrete and the pancreas secretes hormones.
I am also concerned about the double stranded DNA. I am a myasthenia gravis and sjogrens along with 3 other autoimmune diseases and severely low t-cells related to AI. My immunologist does the DNA blood work every so often as he keeps saying to me "you sure remind me of a lupus patient". Sorry to keep bugging you but with the positive DSDNA I would make sure that this is not forgotten. The treatment is still the same as the sjogrens, but the organ damage can show up with the lupus.
Make sure that they check your kidneys our for sure. Also, sjogrens patients can also get something called Renal Tubuler Acidosis and we all need to make sure they watch us for this also. It is very common for sjogrens to tag along with lupus and myasthenia gravis and with Hashimotos or thyroid involvement. Actually, there are a lot of AI that have sjogrens as a tag-a-long.
I would avoid the lip biopsy also if possible. To me it is sort of ridiculous with all the symptoms you have had over the years. I got the dry eyes as the very last symptom. They showed up after I had a positive lip biopsy and before the positive blood work.
As far as why don't docs look for AI disease. That is the million dollar question. I had symptoms for 40+ years before I was diagnosed and I kept telling the docs that it had to be AI and nobody listened. It seems to me that if a patient has many complaints and nothing shows up why not test for AI and see what turns out. If the blood is positive the mystery is solved. If the test is negative I would think that testing down the road should still be considered.
I don't know too many people who enjoy going to the doctor and wasting their money on doc visits and blood work that is useless. Why they have to treat us all like mental cases is beyond me. After I was diagnosed I told a couple of doctors that I must have the words "nutz" written on my forehead cause that is how the medical profession treated me!!!
Hope you can get some relief with the Plaquenil. I just started it a week ago and I am hopeful that I will get some relief with my weird issues. Do not be surprised if you need to take something stronger for the neuro pain. Plaquenil may or may not help that issue. We are all different and some people need to be on both the plaquenil and the Cellcept, Imuran, etc. Good luck. Irish ;D
Hi Tim
Welcome, good luck with the plaquenil.
Cheryl
Talking about "nutz"....after my primary care doc "finally" referred me to a rheumatologist (I don't think he could stand my crying nor my husband sitting in the exam room which never happens)....he referred me, sent out my records and then had the gosh dang nerve to tell me he doesn't need to see me but once, maybe twice a year now and only for "primary care stuff"!!!!!!!!!!!! His ignorance of Sjogrens and other AI issues is what prompted that remark I'm sure!!! Anymore PCP's want the easy cases of colds, flu, get old and then die! I'm already on the search for a new PCP.....they need to work as a team with my other doctors! grrrrrrr!!!!
Quote from: gurs on September 30, 2011, 08:49:03 AM
Hi Tim,
With your double stranded DNA..sound like you might have lupus/SS thing going on. I have them both and also have the
horrific neuropathy you describe, as many of us do. Ive yet to find something that works well for me on this..i cant seem to tolerate all the medications very well.
Sounds like you have a good Neuro..funny, all these docs all say "Fibro" when there are no answers. I wonder how many people with
Fibro actually have undiagnosed autoimmune or hormonal issues? Do they not teach this in medical school? Im really getting tired of educating people on this and how severe these diseases are...and that SS is much more than dry eyes/mouth and some fatigue.
Start with the plaquenil and go from there. Hang in there...your on the right path now!
Gursie
I think the reason they say "fibro" is because it is easy as there isn't any blood tests for it. And there really isn't anything that can be done. So, they say "fibro" learn to live with it, no need to come back.
Same thing for overweight and smokers. As doctors will blame peoples problems on them smoking or being overweight.
Quote from: jasonsmith on October 02, 2011, 05:21:18 PMSame thing for overweight and smokers. As doctors will blame peoples problems on them smoking or being overweight.
I agree Jason! The heaping of guilt on the patient takes many forms.
Well I had my lip biopsy yesterday, not so bad. Had the choice of in office or in the surgery center, chose in office (cheaper). She numbed the area very well (this hurt the most) and then removed what ever was needed. On a pain scale of 1 to 10 I give it a 4. Ended up with about three stitches and significant swelling. Only soft food for the next 24 hours. Some pain at night which woke me up, took a pain pill and was fine. This morning some swelling and little pain. Doc says they will also check the tissue for Lymphoma based on my cancer history along with the risk that comes from Sjogrens. The worst part about this is drinking from a cup or bottle everything dribbles on my shirt, had to use a straw for everything. Just waiting on the results!
Tim
So glad you had an easy time of it. Keep us informed!
Tim,
Sounds like the biopsy went smoothly. Hopefully, you'll be able to eat more normally soon, and not dribble your drink much longer. ;)
Wishing you well with the results. Keep us posted.
Melinda
you are a real trooper to go through with the lip biopsy....best of luck with your healing and the results!
Hi Tim,
Glad that the biopsy went well for you and I'll keep the fingers crossed that the sample will point to an answer for your doctor.
Take care and keep us updated, okay?
Patze