Struggling with work, how does everyone with SS cope?

Hi Jennifer, I was diagnosed with Sjogrens about 3 years ago. I don't have any experience with medications because I have chosen to go a more natural route. I just wanted to make a comment that there are things you can do to help alleviate your symptoms that are natural with no side effects. When I was first diagnosed, my doctors offered medication as the only option, but after much research, I discovered that many people healed themselves through changing their diet, managing stress, reducing toxins, etc. I won't tell you that making these changes was easy, but they have been worth it. It has taken time, and I still have to work on it (like sticking to the foods that are healthy for me and avoiding those that are not). I guess I just wanted you to know you have options in case you didn't already know. Best of luck with whatever route you choose

Can't offer a lot of advice, but I just checked Quinoric and discovered, as I suspected, that it's a trade name for hydroxychloroquine. I've never taken it or any other medications (I'm with Morelia on that one) but I know a lot of people on these SS boards have tried it. As most of them are in the UK, they normally refer to it as Plaquenil.

Reactions have been varied, with some people reporting that it helped their symptoms. However, my general impression is that more people stop taking it because of side-effects than benefit from it. But that's just anecdotal.

I'm retired now, but was about 50 and in a very demanding job when my SS started, and only 37 when I had my first attack of RA. I had to take a couple of weeks' sick leave during that first flare-up of RA, but a homeopathic rheumatologist fixed the problem, and none of my subsequent flares of RA have ever been as bad.

Fortunately, my SS didn't interfere significantly with my working life, though it made me feel pretty miserable at times. But then I think I must have been lucky, because I didn't suffer unduly from fatigue.

Like Morelia, I just learned to work around it, working out what triggered my symptoms - mainly in the area of diet - and avoiding triggers.

I know a couple of people on this forum are going to shoot me down for saying this, but don't assume you'll always feel as bad as you do now. You don't say how long you've had SS, but in my case the first few years were the worst. In the 22 years since my first symptoms I've had several almost complete remissions and a lot of periods when my symptoms were quite bearable. I actually feel better in general now, at 72, than I did at 50. 

Jennifer,

Don't give up on the meds it takes at least six months to kick in the first month is the worst. Most side effects go away within six weeks. I take 400mgs and split the dosage half in the morning half in the evening... A lot easier on the side effects. Try to change up your diet to reduce stomach issues .you will be amazed how much better you will feel and how much energy you will have I am so much better now..started the meds August of 2014. Try to rest when you can, drink lots of water with the meds. You just have to power through the next few months. It does get better! Good luck

Sally

Hi jennifer,

I feel for you. I'm recently diagnosed with SS and I get the aches and Pains tirdness & fluy feelings. As well as the peripheral neuropathy. Which is horrible. I do Office work and my right arm is constantly in pain Like its always swollen. I've changed my diet and been taking some vitamins. I was on hydroxychloroquine but i was alergic to it. Rhumy won't give me anything else but to be honest I don't really wanna go on any of that nasty medication so I'm hoping that eventually I'll just be able to put up with the pain. Do you get any support at work ?? Like extra breaks etc.

what meds are u taking for the arthritis? I was diagnosed with SS in july last year (though I think i have suffered for yrs and put it down to getting old..i turned 64 in March)  The rheum said I was very lucky it was primary SS and not 2ndary as I tested negative for the RA. He said that having both would have complicated things 

He precribed  hydroxychloroquine​ (plaqunil) to be taken 2x a day (morning and evening). It certainly helped my joints and saliva. I took myself off all meds I was on including plaqunil a few months later. My joint pains come and go but nothing I cant live with and if it gets bad i take panadol or brufen (at bed time) I think I am lucky that my SS symptoms are not bad as some of the others. 

​I hope your symptons lessen over time.

Hello everyone and thank you so much for all your replies, it helps so much talking to people who understand how I feel, family and friends are sympathetic but do not really understand how I feel so your replies are so appreciated!

I knew there was something not right around this time last year, my glands kept swelling and were so painful I couldn't eat, I also have the usual symptoms, dry stinging eyes, dry mouth, aching joints, fatigue. I was then referred for blood tests and an ultrasound on my glands, the blood tests showed positive for sjogrens and I have a high inflammation rate. I eventually got an appointment with a rheumatologist around five months later and have been prescribed the Quinoric to ease my asking joints and fatigue.

I'm only 27 years old and have a good job with a mortgage and bills to pay, me and my partner would really like to get married and try for a baby next year and I've been told by the rheumatologist Quinoric is safe to keep taking.

I will certainly take everyone's points and tips on board to striving for a brighter more positive future, definitely cherishing the days I feel near-ish normal! Still just trying to decide whether to continue with the Quinoric or not, such a hard decision, but I will definitely make some diet and exercise changes,

Thanks again everyone,

Jen x

Thanks for your replies! So lovely to know there's so many people wanting to help, I also do office work and my right arm hurts too! I think from using the mouse - and my wrists ache from typing! I do not receive any extra breaks and as some days are much worse than others, I do sometimes struggle to make it through to home time I have been prescribed Quinoric 400mg a day. I take one at lunch time and one in the evening. I have another rheumatologist appointment in four months time to see how things are,

Thanks again,

Jen x