Advise for new patient

Hello, everyone i am new here and i was first diagnosed with VwD and Raynauds later i was told i had Fibro and just this summer was diagnosed with Sjrogens. Its so hard to seek someone to talk or understand how i feel. i don’t know how to explain to my daughter or to not feel sorry for myself. I wanted to know how many people is Sjrogens primary. i am not sure if Sjrogens is primary or not. My rheum just decided to start acupuncture in January. That was what my PCP had sent me for to treat my Fibro when she ran more labs and came up with Sjrogens. I left her office confused and not knowing who to talk to. So i say all this to say is does anyone have issue with their rheum? Does anyone here receive any real pain meds. She told me that she does not do that. She is a naturalist. She gave me plaquenil and prednisone. The pain is so bad and now with this change to winter its started to be worse. Help any advise.

Generally “pain meds” backfire (except in REALLY acute circumstances) and make pain more intense and frequent. Few physicians prescribe them any more. Plaquenil is very often effective BUT it can take up to 6 mos to see improvement. There is not a lot of time determining whether SSJ is primary or secondary as the treatment either way is the same even if secondary to another autoimmune disease. They do spend a fair amount of time eliminating those however

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Welcome to our group! Here you will find people who really understand what you are going through and that can exchange experiences and impressions you can relate to. I was diagnosed with SS little over a year ago, but it seems I’ve had it for at least 6 yrs. I have been diagnosed with fibromyalgia and neuropathy. I have great communication with my rheumy but I also see a neurologist who helps me manage my pain. Plaquenil has certainly not been enough for me. I take neurontin and cymbalta, still I have some pretty bad days and the pain never goes away. I refuse to take prednisone because of the side effects of long time use. I had used it before to treat my severe asthma and it made me miserable. Still, only your physician and you can develop a plan that is good for you.
If you do not feel comfortable with your rheumy, go see another. It is too important, do not settle for less.
I do take a supplement: turmeric, which is a natural anti inflammatory (rheumy recommended it). I also take as much ginger as I can since it is also a natural anti inflammatory.
Do not feel alone. We are here for you. Take care!!

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I was dx with SS in April of this year. I am on plaquenil & evoxac. This is my 4th attempt on plaquenil…but on 12/18 I will be on it for 5 consecutive months!!! YAY!!! It took me about 4 to 4 1/2 months to start feeling ANYTHING from plaquenil. Hang in there!!

I have issues with my Rheumy too. I drive an hour to see him and an hour home. This last appt (12/12) he was only in the exam room with me for about 4 minutes!!! Never touched me (felt of glands or anything like that) he can be SUPER dismissive. I had to ask for my B-12 and Vit D levels to be checked (I have struggled for the last 4 years to keep my Vit D levels in the normal ranges, last testing I was almost in the single digits). He just assumes I have peripheral neuropathy (which I probably do) and puts me on Neurontin without even testing me for PN!!

I feel like the SS has attacked me pretty hard in just 8 months since dx. It attacks my heart, my lungs, and I am assuming now that I have PN. I flare a lot with SS. But these are the cards I’ve been dealt and I will do the best I can to keep my poker face going for as long as I can.

Welcome and best of luck to you!
Merry Christmas!

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What tests are you looking for regarding peripheral neuropathy? Nerve conduction studies won’t show anything if it’s small fiber neuropathy. Neurontin/gabapentin can be very helpful in managing it, but doesn’t do anything to slow down the progress of it.


Thank you. Since I’ve only seen her a few times I will give her a few more visits. She is a sjrogens doctor. I have had low sodium and low vitamin d and calcium in the past. I always had low WBC and hemaglobin. I’ve always wondered w the brusing.

While I do have symptoms of SFN…I am having a slew of other symptoms as well. And at a previous appt he mentioned testing me for PN. I probably do have PN but sometimes I wonder if something else MIGHT be going on in addition to the SS.

I was dx (with SS) in April of this year and I feel like it is just completely taking over!! So I would have liked to be tested to know for sure but I am aware that Neurontin is the go to med for PN. I was put on it a while back for Bipolar Disorder (off label). So I was already familiar with it.

Thanks for sharing. i am just afraid because for some time i felt like something was off and i have a lump on the side of my neck that i have spoken about and they tell me that as long as it does not move im okay. i dont feel its okay unless i get a test that says its okay. i dont want to have lymphoma because its a big chance with SS that you will have it. i get infections easy and i think its all since i was diagnosed. i may have had it for a while because the test came back with very high SS numbers. it is nerve wrecking. i have constant hair loss and i feel like its slowly getting worse and since there is not that much we can do.

I understand you! I found myself with lumps all over my body. My lymph nodes were all swelling because of the SS. I was so afraid it would be cancer… Sogren’s is very complicated; that’s why we need to educate ourselves. Our rheumys will not have the time to go over every possible symptom. The Sjogren’s Book has helped me so much!!! I also take it to my pulmonologyst so he can understand the condition a little better. Unfortunately, not all physicians are familiar with SS.
Still, if you are not feeling sure about the diagnosys, go for a second opinion. Best wishes! Happy 2017.