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Sjogren's Syndrome
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Posted 4/16/2013 9:03 PM (GMT 0)

I was dx'd with Sjogren's 1 year ago along with Scleritis (arthritis of the eyes) Been on Methotrexate since May. SED rate is still around 100 even after being on the max dose of Prednisone. Started Plaquinel for the Sjogrens last month. Last month was also dx'd with Glacoma. Taking drops for this. RA sent me to an Onogolists for more blood work. This week was told Thyroid is all "jacked up". I'm only 51 and actually feel pretty good except for everytime I go to the doctor something else is wrong. CTscan from last Friday showed that my Pituitory glands have basically shut down and all the lynph nodes in neck are messed up as well. BUT benign......Upside, mouth is so dry that it take so long to eat that I have lost 30 lbs in the last year.

Was wondering is anyone out there can relate to all this. turn

Posted 4/17/2013 12:11 AM (GMT 0)
I can relate to the dry mouth. I drink lots of fluids and take evoxac. Biotene mouth wash is also helpful, don't use one with alcohol it makes you even drier. I also have dry eyes, restasis. I use nasal saline for my dry nose as well as steroid nose spray and another nose spray. L ear is constantly stopped up, pollen and dryness is not helping with that. Gerd has been worse, I take aciphex twice a day for that. I am about to decide sjorgrens may be worse than lupus.

Oh and I see the dentist Thursday having dental problems due to the sjorgrens, and I am tired and achy and just feel lousy. Other than that I guess I am okay.
Posted 4/17/2013 11:32 PM (GMT 0)
Yes, seems like every time I get a tests done something gets found. Get into your eye doctor and see if you need to stop the plaqernil as that could be the cause of your glacoma and talk to your RA doctor and see if the methotrexate could've cause the arthritis in your eyes, I was just taken off of thhe methotrexate possibly due to it causing macular degeneration, but it could be the RA causing it as well, but for now I'm off the methotrexate and its a wait game and I'm only 47 yrs old. Methotrexate can add to your mouth dryness and its so important that you drink a ton of water the day of, before and after your mtx day! Watermelon can help, so try watermelon, but just a slice a day. And Bluejeans is correct on trying biotene as well. I have an enlarge pituatary gland caused by prolatin its a small benign tumor and I take a medication for that for over 8 yrs now. Many well wishes and keep us posted as we do care and give the watermelon slice a try and its good your benign as well, so woo hoo on that, keep us posted as we do care...check out www.drugs.com for your medications and to find reactions and such info.
Posted 4/18/2013 4:56 PM (GMT 0)
Hi Vandi. I can fully relate to the frustration of the docs always finding something else wrong. I have lots of problems from Sjogren's, but unlike bluejeans my lupus is much worse. I've taken many different lupus drugs since I was diagnosed, but the only thing not OTC for my Sjogren's is having plugs placed in my tear ducts by my ophthalmologist (an MD who specializes in the eye). I agree with Chartreux that you should pay your ophthalmologist as visit regarding plaquenil and all your eye problems. For all I know there may be ophthalmologists who sub-specialize in autoimmune diseases of the eye. I've not noticed watermelon improving my saliva so thanks Chartreux, I'll see if it helps. Like the others I use Biotene toothpaste and oral balance gel at night. I use ACT mouthwash that helps re-build the enamel that loss of saliva destroys. I use Rx Nasonex and mucinex for my sinuses. Mucus thickens due to moisture loss. I also use Rx vagifem suppository and Replens so my hubby and I can still have sex every blue moon. I'm really sorry to hear of your complications. They all sound pretty rotten. I hope you find some relief soon. I'm sending you lots of hugs! Love, Butterflake
Posted 4/18/2013 7:40 PM (GMT 0)
You guys are all amazing. I was dx'd with the scleritis and Sjogrens at the same time then after a month is when they started me on the Meth. So I don't think one is causing the other. And at that time they said I was borderline with the Glacoma so I don't think the Plaquinel that I just started last month caused it. I do the all the mouth washesm eye and ear drops mentioned. On top of it all I got braces in Jan last year for my 50th bday. Had I know I was going to have all this stuff I wouldn't have messed with them. Makes eating alot worse with braces and dry mouth. LOL They clean every 3 months to help prevent cavities. God is great and my faith is in Him . Big hugs to ya'll..
Posted 4/18/2013 8:18 PM (GMT 0)
Oh wow, I had braces with headgear way back when and they sure do make it hard to eat, I still cannot bite into an apple or open my mouth really wide...on the days of the methotrexate try the watermelon slice. and get plenty of water as mtx can dry you out, are you taking pills of mtx or injections I was doing the injections, and are you on a prescription folic acid you need to ask your doctor about the folic acid prescription 1mgs, I was taking 2mgs folic acid along with 1,000mgs vit C and taking B-12 daily, always took all this in the a.m. 4 hours before I did the mtx. do not take amoxicillin at all with mtx it makes the mtx up to toxic levels... all the things our docs don't tell us eh...But go and ask your eye doc if he thinks the plaqenil helped your eye's get worse, it can do that and they need to check and take pictures of your retina's as well....keep us posted and you do need yearly pictures of your eye while on the plaquenil...
Posted 4/19/2013 9:31 PM (GMT 0)
Yes I am taking 2 2mgs of folic acid daily. I drink tons of water daily. My eye doctor is fully aware of the Plaq and doing all of the exams for it. Because of the Scleritis I am in there every 6 weeks. Thank goodness I have a very understanding boss that lets me go to at least one doctor appt weekly. lol I will try watermelon slices also. I also have a great pharmacisist that keep track of my meds before I get something filled to make it is all good
Posted 4/20/2013 1:12 AM (GMT 0)
Also, a good vitamin is omega~3, and vitamin C will help the folic acid along... I get to have pictures of my eyes every 4 months now and insurance is making me pay the full deductible first, which is not right...I also take a vitamin called "right for the macula" and hopefully my eyes wont deteroiate to fast...Many well wishes.
and my pain mangement doc wants low back mri's, but putting those off for now, as it can just be so overwhelming at times, so I totally understand you on that...hope the mtx helps you, I could tell it helped me because my joint swelling was so much better, I'm actually hopeing to get put back on those injections...
Posted 4/22/2013 6:23 PM (GMT 0)
Everything is so expensive. And they doctors want to see you all the time. They don't understand that sometimes you just can't afford to go. Then they say they will work with you. But who wants all these bills. Hoping the best for you Chartreux :)
Posted 4/23/2013 12:42 AM (GMT 0)
Yep they work with you until they get the co-pay, $50. for specialists and I see 5 different specialist and then my pcp..
Thank you for those well wishes, sure do need them. Many well wishes to you as well :)
Posted 4/23/2013 12:33 PM (GMT 0)
Keep me posted Chartreux :)
Posted 4/27/2013 6:38 PM (GMT 0)
I can relate to you... I have sjorgrens and lupus. They diagnoses me with both and since I have been taking the supplements, I am testing negative. I still have the symptoms of both, but my pain level went from a 6-8 to a 2-4. I take 3grams of omega 3 fish oil, 3 grams of evening in primrose, 2 hyaluronic joint complex,
40mg. of Lutein and 5mg Astaxanthin a day. I also take Jarrows Neuro optimizer to help with the brain fog. This keep my pain down to a rumble and my eyes are getting better all the time. Before you do something like this you need to check with you doctor or pharmacist to be sure they won't interfere with your prescription meds. Just because this works for me...doesn't mean it will work for you. It took me a year to get to where I am today. The doctors are amazed and say that my vitamins are doing the same as the meds would without the side effects. Check each one of the supplements on the web in conjunction with lupus and sjorgrens...you will be amazed! Remember even if you have to take the prescription meds...nutrition, nutrition, nutrition. You will feel better and have more energy, with less pain. Life is amazing...so get out there and live it. yeah
Posted 5/27/2013 7:35 PM (GMT 0)
Hi, new here today but wanted to respond.  Being fairly newly diagnosed, it's going to take awhile to settle things down with your autoimmune issues and any others that are hormonal in nature-pituitary and thyroid count. If you eye guy finds no connection with Plaquenil and glaucoma-I have not heard that, only retinal build up, so I am filing that info away too-remember that plaquenil takes awhile to build up in your system enough to do it's job. As for the dryness-my purse is a mini mart! I carry water drops, gel drops, and oil drops. I have a 1.5L water bottle and a 32oz bottle of gator aide at all times.  I also carry a few packets of salt-like from a fast food place-at all times due to my low blood pressure and dehydration issues from Sjogren's. It's a one step at a time process from discovery to treatment options to finding your personal cocktail that works. Just keep giving your body the rest, food, and hydration it needs. Supplements like ensure or even pediasure are great ways to get nutrition in a pinch. Zellies are also a sugar free mint that aids in protecting your teeth. Most sugar free hard candies are just as bad for your teeth as the sugared ones. I hope any of this helps...
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