Finally Diagnosed

[Tim]

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

[Carolina]

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

[A66eyroad]

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.

[Scottietottie]

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 

[Jellyb]

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.

[Katybarstool]

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

[Patze]

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

[TripleC]

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 ?

[jasonsmith]

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.

[jasonsmith]

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.

[Meld256]

Hello Tim,

Welcome to Sjogren's World! 

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

[gurs]

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

[anita]

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. 

[Joe S.]

welcome Tim.

[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