Diagnosed with Sjogren's

[Cynthia Robins]

Hi everyone. After trying numerous approaches to figure out what's going on with my CFS, I went to see a rheumatologist and had a ton of bloodwork done. Saw her on Monday and the ONLY things that showed up were low C3 and C4 complements. But they were low, which is encouraging since it indicates there's an inflammatory something going on in my system. I've also been dealing with dry mouth and eyes, so between those results and my clinical signs, she diagnosed me with Sjogren's (she has an affiliation with the Sjogren's Center at University of Pennsylvania, so I trust that she knows what she's looking at). I do have a couple of questions that I thought I'd pose here - hopefully someone has some information.

First, I started on Plaquenil Monday evening, one 200 mg tab twice a day. Can anyone who's been on this med tell me how long before you started to feel any positive effects? I did a little web surfing and it sounds like it could be a slow climb out of the hole, possibly several months. Just want to know if I really do need to be patient (yeah, six and a half years without a diagnosis...I suppose I can hang on for a few months).

Second, and oddly, the antibody tests for Sjogren's (SSA and SSB) were both negative. I believe that means I have secondary Sjogren's, i.e., it's secondary to something else....which also means I may only be halfway towards an effective treatment. Does anyone know if it's possible to get a diagnosis of primary Sjogren's with these two test results being negative? I need to call my doctor next week (I just started worrying about this last night), but if anyone has thoughts on this, I'd welcome your opinion.

Many thanks, as always. Even though I haven't posted much, this is a tremendous resource for me.

 

[Kati]

I have been on Plaquenil for about 12 years, stopping a couple years ago. It doesn't kick in for a few months.

It is a drug that I took at bedtime, the 2 pills at once, with a bit of food to not upset the stomach.

Do make sure you get a baseline eye exam at the ophtalmologist. Annual eye exam is necessary while on this drug.

 

[Lotus97]

Are the tests for Sjogren's accurate? I have the symptoms of Sjogren's, but I also have Lyme so I'm not sure if it's just that Lyme symptoms are similar to Sjogren's in my case. If anyone knows more about this in regards to Lyme I'd like to hear about it. Either way, I doubt my doctor will do anything to help me, but I'm still curious.

 

[Cynthia Robins]

I have been on Plaquenil for about 12 years, stopping a couple years ago. It doesn't kick in for a few months.

What kinds of symptom improvements did you notice that indicated the drug was kicking in? Also, can you say why you stopped taking it?

 

[Joi]

What kinds of symptom improvements did you notice that indicated the drug was kicking in? Also, can you say why you stopped taking it?

I was diagnosed with Primary Sjogren's 5 years ago through a lip biopsy. My blood work was also negative. I began taking plaquinel one year later because I was fatigued and had joint pain, mainly in my feet. I took the palquinel for 3 years. I also began taking Vitamin D3 (5,000IU's daily) Vitamin K2, a quality probiotic, selenium (50mcg daily) Fish oil and hardly ever eat gluten. I began feeling really great last year so I decided to go off the plaquinel. It's been 8 months and I still feel wonderful. I'm 55 teach Phys. Ed., run 1/2 marathons, teach tennis and organize running groups for first time runners. I have plenty of energy and no aches or pains. I feel incredibly lucky. I don't know if I have managed that elusive cure or if I'm just in remission. I have to add my mother was diagnosed with Sjogren's at the age of 50. She never took plaquinel or watched her diet much. She developed thyroid cancer, had terrible digestion issues and had to retire early from teaching due to fatigue and poor health. I have tried to make the opposite choices. So far it has worked for me. I lead a full life and have energy for everything except housework Good luck to you! I hope this helps!

 

[Joi]

Hi everyone. After trying numerous approaches to figure out what's going on with my CFS, I went to see a rheumatologist and had a ton of bloodwork done. Saw her on Monday and the ONLY things that showed up were low C3 and C4 complements. But they were low, which is encouraging since it indicates there's an inflammatory something going on in my system. I've also been dealing with dry mouth and eyes, so between those results and my clinical signs, she diagnosed me with Sjogren's (she has an affiliation with the Sjogren's Center at University of Pennsylvania, so I trust that she knows what she's looking at). I do have a couple of questions that I thought I'd pose here - hopefully someone has some information.

First, I started on Plaquenil Monday evening, one 200 mg tab twice a day. Can anyone who's been on this med tell me how long before you started to feel any positive effects? I did a little web surfing and it sounds like it could be a slow climb out of the hole, possibly several months. Just want to know if I really do need to be patient (yeah, six and a half years without a diagnosis...I suppose I can hang on for a few months).

Second, and oddly, the antibody tests for Sjogren's (SSA and SSB) were both negative. I believe that means I have secondary Sjogren's, i.e., it's secondary to something else....which also means I may only be halfway towards an effective treatment. Does anyone know if it's possible to get a diagnosis of primary Sjogren's with these two test results being negative? I need to call my doctor next week (I just started worrying about this last night), but if anyone has thoughts on this, I'd welcome your opinion.

Many thanks, as always. Even though I haven't posted much, this is a tremendous resource for me.

I was diagnosed with Primary Sjogren's 5 years ago through a lip biopsy. My blood work was also negative. I began taking plaquinel one year later because I was fatigued and had joint pain, mainly in my feet. I took the palquinel for 3 years. I also began taking Vitamin D3 (5,000IU's daily) Vitamin K2, a quality probiotic, selenium (50mcg daily) Fish oil and hardly ever eat gluten. I began feeling really great last year so I decided to go off the plaquinel. It's been 8 months and I still feel wonderful. I'm 55 teach Phys. Ed., run 1/2 marathons, teach tennis and organize running groups for first time runners. I have plenty of energy and no aches or pains. I feel incredibly lucky. I don't know if I have managed that elusive cure or if I'm just in remission. I have to add my mother was diagnosed with Sjogren's at the age of 50. She never took plaquinel or watched her diet much. She developed thyroid cancer, had terrible digestion issues and had to retire early from teaching due to fatigue and poor health. I have tried to make the opposite choices. So far it has worked for me. I lead a full life and have energy for everything except housework Good luck to you! I hope this helps!

 

[Kati]

What kinds of symptom improvements did you notice that indicated the drug was kicking in? Also, can you say why you stopped taking it?

i got on Plaquenil because I had joint pain, fingers and toes. I had trouble oopening door knobs. It helped the pain after 4-5 months.

i got sick with ME from Nov 2008 ans on. i stopped it at the request of one of dr Klimas in order to et my immune system tested. i decided not to restart it, and the finger and toe pain didn't come back, to my surprise. however these days I have big joint pain, of note ankles, shoulders and knees.

 

[robertpcx]

Hi everyone. After trying numerous approaches to figure out what's going on with my CFS, I went to see a rheumatologist and had a ton of bloodwork done. Saw her on Monday and the ONLY things that showed up were low C3 and C4 complements. But they were low, which is encouraging since it indicates there's an inflammatory something going on in my system. I've also been dealing with dry mouth and eyes, so between those results and my clinical signs, she diagnosed me with Sjogren's (she has an affiliation with the Sjogren's Center at University of Pennsylvania, so I trust that she knows what she's looking at). I do have a couple of questions that I thought I'd pose here - hopefully someone has some information.

First, I started on Plaquenil Monday evening, one 200 mg tab twice a day. Can anyone who's been on this med tell me how long before you started to feel any positive effects? I did a little web surfing and it sounds like it could be a slow climb out of the hole, possibly several months. Just want to know if I really do need to be patient (yeah, six and a half years without a diagnosis...I suppose I can hang on for a few months).

Second, and oddly, the antibody tests for Sjogren's (SSA and SSB) were both negative. I believe that means I have secondary Sjogren's, i.e., it's secondary to something else....which also means I may only be halfway towards an effective treatment. Does anyone know if it's possible to get a diagnosis of primary Sjogren's with these two test results being negative? I need to call my doctor next week (I just started worrying about this last night), but if anyone has thoughts on this, I'd welcome your opinion.

Many thanks, as always. Even though I haven't posted much, this is a tremendous resource for me.

With all the blood work you had done did you have a Magnesium RBC blood test, this blood test determines weather you have a magnesium deficeincy, any number below 6 indicates a magnesium deficeincy and it is suggested that you should supplement with a magnesium supplement. ReMag is 100 percent absorbed at the cellular level so there is no diarea when taking this supplement here is where you can purchase the ReMag .http://www.rnadrops.info/products/remag This test does not require that you see a doctor, you can order this test online here, http://requestatest.com/magnesium-rbc-testing, magnesium plays a role in the production of energy in the body, and so with insufficient magnesium in your system your body is unable to produce the energy it needs to function normally. This is a natural way to provide more energy for the bodies production of energy instead of a prescription med that may have untold side effect.

For more info on magnesium and the key role it plays in the production of energy in the body, Read the Book "the magnesium miracle" By DR. Carolyn Dean, in her book the talks about CFS and how magnesium can help overcome this disorder,