Sjogren's and Disability

For those of you with Sjogren's, at what point did you consider going on disability? Did you ask your dr or did they suggest it? I've been having sever flares for 6-7months now with no relief, I am working part time and going to school full time and I can barely make it through my day and by the time I get through work I'm in excruciating pain, and then the following day my fatigue is so bad I don't know how I'm supposed to function at my job. My dr wants me to try methotrexate but I'm unsure how I can fit that in to my life right now when I'm having a hard time as it is getting through life without having a the rumored methotrexate hangover. I don't know how to keep up with the demands of life anymore.

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Brittany, I can't imagine a doctor recommending that you file for Disabiltiy because they will have to fill out a bunch of ppw on it :-) I have RA and Sjogren's. The Sjogren's has damaged my Kidneys and has given me Type II Diabetes. I asked my doc about filing for Disabiltiy and he just hemmed and hawed about it. I really like him as a doc and had expected his support, so I was surprised. I am guessing that it is because he knows that it is very difficult to get. And Sjogren's being one of the 'invisible' diseases probably makes it even trickier. That being said, I am still going to file. By myself the 1st time.. then when it is denied... which it will be, I will get an attorney. About Methotrexate.. I can't recomment it highly enough. The 1st Rheumy that I had said that there wasn't really much that he could do for me. That was when I lived in Vermont and there was only 1 Rheumy in town, or for hours away for that matter. When I moved, the 1st thing the new doc did was put me on Plaquenil. That helped a lot. My next doc put me on the Methotrexate and my pain was gone. Gone. It helped with the fatigue and dryness as well... but as for the pain that I had,, it was truly gone. Everyone is different and you will get different results, maybe even better. I always recommend trying for two reasons. First.. you don't know... good or bad.. until you do. And second, something that a lot of people don't seem to take into consideration is that you are not only trying to fight the symptoms that you have today - which is understandable as they are very pressing and hard to avoid - but you are also trying to prevent the advancement of your disease... IE - the onset of Chronic Kidney Disease. Because of the meds that I take, my blood is drawn every 8 weeks. My kidney #'s starting rising a couple of years ago, so they have been watching them. Finally the #'s got high enough that they did an Ultra-Sound on them. My doc sent me to a Nephrologist, thinking that he would probably have to take me off of my meds; that they may be what was causing the damage. The Nephrologist looked at everything and told me that he believes that it is actually the Sjogren's that is causing the Kidney Damage, not the Meds. My Kidneys are shriveling/shrinking. I told him that aside from sounding like a great name for a Punk Rock band 'The Shriveling Kidneys', it didn't sound good to me. He said not really and that I needed to stay on the meds to keep the disease under control and keep the kidney disease from progressing at a more rapid rate.
So, left unchecked, a disease like Sjogren's; one that attacks all moisture producing glands and organs - not just the eyes and mouth, like a lot of articles say, can be very dangerous.
I would really take your doctor's recommendation to heart and beyond that, try to focus on spending as much time, away from school and work, relaxing and resting. It sounds like you are young and probably at an age when you want to be out and active.. and you should be. But you may not have that luxory. Especially if you want to be able to pull off work and school. I admire you for keeping up with school. Great job!!! PS... don't forget your Flu shot!!!! :-)

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I've tried a plethora of medicines to treat my sever Sjogren's symptoms. I've tried OTC eye drops and mouthwashes, I've tried evoxac and pilocarpine both with very adverse reactions, I've tried restasis and numoistin with no help. I have been on plaquenil for over a year now and my flares are getting worse. I've gone from 118lbs to 106lbs in about 4 months and keep dropping weight. At first I was very leery about trying methotrexate and now I'm in so much pain that its completely over ridden those fears but I don't know how I'm supposed to fit in another day of feeling crummy into my schedule. I work M-F and I have piles of homework on the weekends. I'm only working 25-30hrs which I cut back from 40hrs a week and I'm not doing any better. All I can do is school and work because my body won't allow me to do anything else. Financially I can't afford to cut back any more on work or school. Lately it's been so bad that I'm not sure if I can even make it through work and I'm afraid of loosing my job if I call in sick because my FMLA was not approved because I haven't worked at this facility for 12 or more months yet. I feel like I am at the end of my rope.
I am wondering before your kidney problems starting showing up in blood work did you have any symptoms? I often get kidney pain or tenderness, especially if I take any advil for pain (which does nothing so I've stopped bothering with it). I haven't had blood work done since April but it always shows my kidneys are fine but I don't understand why I have pain and tenderness in them every once in awhile (using during a bad flare).

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I forgot to mention I've tried prednisone for immflamation and flares and it doesn't do much.

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I am very interested in this. I too want to be aggressive. Why would anyone want to wait until this stuff progresses? I as very glad I found a rheumy who would give me Plaquenil when others wouldn't. How did u get a doc to start u on methotrexate? I dunno that I am ready for that but again don't want to wait til it is hitting my organs

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I had to try all the above mentioned drugs first with no success and have sever flares for 6+ months as I said before my dr wanted me to try methotrexate- It def wasn't something I asked for! She prescribed it over 3 weeks ago and I have yet to start it like I said I just don't see how I have time in my week to feel worse for a day.

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As for my doc giving the Methotrexate, I didn't even know about it, he just mentioned it and said that I should try it. I was very lucky. Well.. Let's see.. I started having pain in my joints in Junior High school (that's what they called it when I went, if that tells you how long ago it was), started putting chapstick type stuff on my lips shortly thereafter and from then on, started having blood sugar problems at about 20 that no one could get ahold of or figure out, and started having sharp, stabbing pains in my eyes that doc's kept saying were the beginning of migraines - though I kept telling them that there was no head pain before, during or after (It was actually damage to my eyes from the Sjogren's). I was not actually diagnosed with the Sjogren's until I was about 37 years old. Luckily they also tested me for RA and some other Auto-Immune diseases that go with Sjogren's just to be sure and the RA was positive. Let's hear it for the best ENT in Vermont!!! My Perotid Glands in my cheeks and neck kept swelling up so huge that I got referred to them. They ran blood tests, biopsy'd a salivary gland and did the Shirmer test. I HATE that Shirmer test!!! But I digress. So, I think it was the extreme dryness of the eyes and mouth, the pain, but mostly that the kidney #'s were starting to climb that had him recommend the Methotrexate to me. But I would think that if you are in a lot of pain and/or having so much fatigue that you can't function that it ought to be something for your doctor to consider and that you should bring it up. Just let him/her know that you are having trouble functioning in your daily life. Make a list of all of the things that are being affected by your pain, fatigue, etc and bring it with you to your appt. My poor doctor, each time I bring a list with me; I can see a faint grimace on his face. But he is so patient and good about answering each question and addressing each issue. If your doc isn't, then it's time to find a new doc. I am very firm in my belief.. that is what they are there for. He is there for me... I am not there for him.
About Kidneys, from what I read there are rarely symptoms felt when you have Kidney disease. The only thing that I had noticed is that I had a strong distaste for meat for quite awhile, which may or may not be linked. Just the sight and smell of it was suddenly so GROSS to me. And with Kidney Disease, you are supposed to eat a lower protein diet with much less or no meat. So I don't know if my body was reacting because of the kidneys or something else.. who knows. I don't have a great Gastro system anymore either. But it is tricky because Kidneys want lower protein, blood sugar wants higher protein. Seriously, some days I just want to scream.... but... HA! My throat is just too dry!
I have a lengthy thing that I have typed up for people who are newly diagnosed w/ Sjogren's. It doesn't sound like either of you are... but maybe there is something on there that can help... you never know. We always learn from each other and I always add to it when I learn something new.
Here it is:
Sjogren’s Info:

Restasis Eye drops… one drop in each eye twice a day

Salagen… one pill, twice daily (helps with saliva production)


I also use, over the counter, Oral Balance. It is a Saliva Substitute, made by Biotene. You can probably get that at a regular pharmacy like (not sure what’s on the West coast anymore) Eckerd, CVS, Rite-Aid, Etc. Usually near the toothpaste. I only use it at night, because it is anywhere from $6 - $8 per tube. Lots of Vaseline in the tube for lips. If that doesn’t work, I have upgraded to Aquaphor. And I find, for eyes, that for throughout the day Refresh Liquigel – For Moderate to Severe Dry Eye is the best for me. And at night I use and HIGHLY recommend GenTeal Eye Gel. All of my best Opthamalogists’s recommend it as the best and I agree. I also have the plugs in my eyes. I can’t even imagine not having them. Always sunglasses outside and sometimes even inside. And for dry sinus’s use a saline solution a couple of times a day.

If you aren’t seeing a Rheumatologist, you SHOULD be!! And don’t settle,, keep searching until you find one that you really feel comfortable with!!! Also, it is very important that you see an Ophthalmologist and Dentist VERY regularly. Your eyes and teeth can be very damaged by the Sjogren’s.

TONS of water, no caffeine, no smoking, no alcohol… all of these help. ( Not meaning to lecture.) I have also heard and have tried, with much success, that vitamin E gel’s squirted onto the tongue can help when the tongue is very raw. Just regular Vit E capsules. (I use Nature’s Made 400 mg) It is just usually some kind of vegetable oil with vitamin E in it and it does help. Also good right before bed. Brush your teeth twice a day and rinse with ACT fluoride rinse. I can’t use the Mint or Cinnamon ones, they burn. But the grape and bubblegum kid’s ones don’t hurt too much and the fluoride is really important to protect our teeth. Keep lotion on skin after shower/bath and each AM, if you don’t shower each day. I start to get calluses if I miss some spots.

I always have a humidifier running in the house if the heat or a/c is running. And always in my room at night. It helps to keep my eyes, nose and mouth from getting so dry and sore. I keep a bottle of eye drops right next to my bed (along with the lip stuff and saliva substitute.) But there have been times when my eyelids actually stick to my eyeballs and I have to squeeze drops into the corners of my eyes just to get them open and then go and put in more eye gel. That won’t usually happen if the humidifier is running. I always travel with one.

You may get ‘flares’ when all symptoms are worse,,, just focus on getting as much sleep and rest as possible during these times. Let everything else… housework, getting out and about, etc go. They will still be there later. With these soft-tissue disorders your body will be slower to heal from injuries and illnesses, so take good care of yourself. This is a very frustrating disease, because no one can see it. So while you can be having some very painful, uncomfortable or frustrating days, you look fine to everyone and they can and will expect you to be at your best. There are Sjogren’s support groups all over the place. Your Rheumatologist should know if there is one near her. . But after years of this, it is nice to sit in a room of people who understand what you go through on a daily basis.

There is lots of info on the Web about Sjogren’s. She can look up the Sjogren’s Syndrome Foundation at Sjogrens.Org. They have a newsletter that she can get a subscription to. They also have books that she can purchase. There is a very good book called The Sjogren’s Syndrome Handbook.

The last thing that I would say on meds is 2 part. Be careful of too much NSAID consumption as they can really wreak havoc on your liver and kidneys. And when deciding whether or not to go on the ‘bigger’ or ‘more serious’ meds; remember that, yes, they do have serious side-effects. However, you are not just using them to treat your current situation, but also to try to prevent further progression of your disease.

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TheDogWantsOut I already do all that or have tried all of that (aside from a humidifier) except I can't do salagen/pilocarpine because it makes me so sick

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Dogswantout how come u only take 2 saligen a day? Dies it help? I take 3 evoxac but it does not always do anything. I was wondering if saligen works better. U can take 3-4 of those each day can't u? My doc and also someone on a blog mentioned sometimes it takes several months on evoxac before it really kicks in with sluggish glands. I may try saligen tomorrow. I have an rx just wanted to give the other a fair chance. I will take all the help I can get. Thanks for all the info!

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Thanks All, very helpful. I had terrible fatigue for 3 years then recovered. The dry
Eyes, nose & mouth started later, though I'd had some symptoms for yeArs.
I do a lot of the above, just one observation- wouldn't it be great if
Someone would invent a humidifier for the car! I find it's one of the worst places
For dryness.

Good luck guys!

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Hi all, my tongue gets very dry and burns all the time.. Does this have anything to do with any autoimmune disease . It has been burning me for about two years... and I get a white film all over it as well ongoing, Dr. told me this was called Hairy Tongue and asked if my immune system had been comprimised in some way... Just curious about this..

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Hi,
In 2002 i had pneumonia and just got sicker by the day.I told the doctors that I thought I had Sjogren's and eventually they agreed.I was having severe pain and a friend said I should see a certain doctor.He diagnosed me with mixed essential cryoglobulinemia so I had to have 38 apheresis treatments(they remove all of your blood from one arm then get rid of the plasma and add albumin it takes about four hours)During this time I also managed to get herpes on my cornea and then cataracts which I had removed.I can now see without glasses but have bilateral iritis.I am taking a myriad of tablets and using eye drops but don't seem to be getting any better.Just wondering if anyone has these types of conditions

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Brittany, I find the humidfier helps a lot. I have just had to kick it into overdrive as our humidity that we have all summer has left us and I have the 1st of my Fall migraines. The Salagen and Evoxac both make me sweat more than salivate and upset my stomach,, so I only actually take one now, at night - when I am sleeping.
Jangove -- have MANY times thought how much I would love a Humidifier for the car AND airplanes !!!
Delicia -- Your mouth issues do sound like Sjogren's symptoms.. for you and Xtra, there are tests that they can run to tell whether or not you have Sjogren's... They can biopsy one of your salivary glands. Did you look up Hairy Tongue? It says that it's actually called 'Black Hairy Tongue' and your tongue actually gets black, not white. And I would think that he would run blood work to see if your immune system is compromised, not ask you if you 'think it might be or it has reason to be compromised in some way'????
Xtra -- Wow, I am sorry.. I looked up 'mixed essential cryoglobulinemia'. That is some nasty stuff! How many of the 38 treatments have you had? I know with the Sjogren's you can definately have eye issues... either damage from the dryness or issues from the med's... but none of what you have experienced sounds like what my Opthomologist's have discussed with me. are you taking Plaquenil? If so, your eyes should be checked regularly for Glaucoma and here is the warning for user's of the drug as well: *** This medication may infrequently cause serious (sometimes permanent) eye problems or muscle damage, especially if you take it for a long time. Seek immediate medical attention if any of these unlikely but very serious side effects occur: sensitivity to light, vision changes (e.g., blurred vision, seeing light flashes/streaks/halos, missing/blacked-out areas of vision), muscle weakness.
How are your Kidney #'s? I saw that the M.E.C. can cause Kidney issues. The Sjogren's has caused Kidney disease in me, and you have to watch for damage to the Kidneys with all of the drugs... so I was just going to suggest making sure that your doc/doc's are keeping a close eye on them. I have not been allowed to take any NSAID's at all for years!! Nothing at all with Ibuprofin, Aspirin, Naproxen, etc.
OK...well my migraine is coming back... gotta go... what I wouldn't give for some Ibuprofin, Aspirin, and Naproxen :-)
One last thing Delicia... those Vit E gel caps opened up onto your tongue really do help!!!

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Hi guys! I was diagnosed with Sjogrens in may 2012. After 8 months of hellish pain and fatigue I found a NP that listened to me and tested me. I felt like I was dying and found crazy all at once. I was started on plaquinil on may 15 and have just recently been able to return to shopping and some of my previous household activities. I'm a registered nurse and my nursing duties have suffered. I had to drop out of school and realize its more important to live than try to push myself. I have my masters and am now looking for a teaching position that will be a little less strenuous, physically. The tops you have given are wonderful. Everyday I wake up I have some type of pain, but its one hundred percent better than how I felt previously. In the quest to get a diagnosis one of the drs gave me a rx for baclofen for the severe muscle spasms I was having in my leg. I have continued this twice s day and I truly believe this has added to my increase in rom. I love this site and love that I'm not going crazy with the symptoms I have. I love to quilt and until recently, would just go into sewing room and touch the fabric because I was too weak and in such a fog that I couldn't begin to try to see. I'm so relieved to finally be able to pick back up.

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Sorry about my spelling. I'm using my iPhone. Lol. I'm going out today to buy a humidifier as you mentioned. Until reading these posts I thought the severe stabbing pain in my eyes was just me, but now I realize its part of the Sjogrens. I have found that the eye ointment at night keeps my eyes from having that sensation as often. Does anyone have the tight, burning, twisting feeing in their elbows, shoulder, ankles, or hands? It's a weird sensation that comes and goes. I also have intermittent bowel issues with severe diarrhea. It seems that if I stay away from spicy foods its less intense. Food doesn't taste the same anymore either, although I have not dropped any weight. Any thoughts?

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The meds only quell the symptoms, they do not irradicate the disease and like any drug the long term side effects are questionable.

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