Sjogren's Syndrome Support Group
Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.
Hi everyone.
I saw my rheumy yesterday. He said my lymph nodes and glands in my neck are extremely inflammed and the joints of my knees, ankles, feet, elbows, wrists and hands are also extremely inflammed. He said that my eyes and mouth are so dry that I am playing with disaster. He also noticed I had a black streak on the left side of my face and one down my left shin. He said they resembles bruises but that it was actually my body's reaction to Plaquenil. Has anyone else had skin color changes due to Plaquenil?
He told me that I need to get off the Plaquenil immediately and started me back on methotrexate and folic acid. I don't know how I feel about this because last time I took methotrexate, for three to four days after my weekly dose I was violently ill. He also put me on Savella. At one point I was taking Cymbalta to help block nerve pathways, but my insurance did not cover it so I stopped taking it. I don't know much about Savella, but he gave me enough samples to carry me to my next visit with him in November. He ordered an MRI/MRA of my brain, too.
All these medication changes are making me dizzy. I know this is all about finding the right med combo that works for me, but really, I feel like a human pharmacy and I am only 39. Plus, I have to wonder what all these meds are doing to my body. So, now I take synthroid, lisinopril, vitamin d, folic acid, methotrexate, savella, and lasix.
Sorry, just needed to vent. I have been feeling increasingly hopeless and like there is never going to be a day where I am not in constant pain. I have refused pain meds, but am starting to wonder if maybe I should reconsider. A friend offered me some marijuana a few nights ago, and it really helped with the pain but resulted in severly violent dreams. No good for me!
Thanks for letting me vent.
I saw my rheumy yesterday. He said my lymph nodes and glands in my neck are extremely inflammed and the joints of my knees, ankles, feet, elbows, wrists and hands are also extremely inflammed. He said that my eyes and mouth are so dry that I am playing with disaster. He also noticed I had a black streak on the left side of my face and one down my left shin. He said they resembles bruises but that it was actually my body's reaction to Plaquenil. Has anyone else had skin color changes due to Plaquenil?
He told me that I need to get off the Plaquenil immediately and started me back on methotrexate and folic acid. I don't know how I feel about this because last time I took methotrexate, for three to four days after my weekly dose I was violently ill. He also put me on Savella. At one point I was taking Cymbalta to help block nerve pathways, but my insurance did not cover it so I stopped taking it. I don't know much about Savella, but he gave me enough samples to carry me to my next visit with him in November. He ordered an MRI/MRA of my brain, too.
All these medication changes are making me dizzy. I know this is all about finding the right med combo that works for me, but really, I feel like a human pharmacy and I am only 39. Plus, I have to wonder what all these meds are doing to my body. So, now I take synthroid, lisinopril, vitamin d, folic acid, methotrexate, savella, and lasix.
Sorry, just needed to vent. I have been feeling increasingly hopeless and like there is never going to be a day where I am not in constant pain. I have refused pain meds, but am starting to wonder if maybe I should reconsider. A friend offered me some marijuana a few nights ago, and it really helped with the pain but resulted in severly violent dreams. No good for me!
Thanks for letting me vent.
You didn't mention if you use any products for your eyes or mouth but I hope you do and sip water continuously which helps you gain some moisture.
It's funny I was going to ask this morning what are the other options if you cannot take Plaquenil and what are they about. I am so sorry I cannot take it as it is one of the milder ones out there and does seem to help many people.
take care
As for the dry eyes and mouth, I use GenTeal gel for my eyes when I can (since you can't be wearking contacts when you use it, I tend to use it only at bed time) and Renu liquid gel when I have my contacts in. I chew sugarless gum to keep my mouth moist and when at work, I eat ice chips whenever I can. I work in a very busy pediatric ER so sometimes I go 12 hours with no break or time to keep drinking. Vaginal dryness has become a huge issue, but no worries there. I am too tired and sore to have sex with my husband :) Also, my skin has become severly dry, so I use a hydrating lotion after every shower and my hair is fallin out at alarming rates and has become very dry.
When I saw my rheumy, he said that he does not feel that the Lupus is the cause of any of this and that based on my lab tests, the Lupus has gone into full remission. He also said that Sjogren's rarely has remission/relapse phases like lupus and that once you start exhibiting symptoms, you generally have them for the rest of your life. It is just a matter of getting them under control (more like slightly tolerable).
I started the Savella yesterday and noticed no ill side effects. I will start the methotrexate tomorrow and know that I will nauseated for about 3 days following. I will take nausea and vomiting if it means even a slight reduction in the pain!!
My rheumy noted that the glands and lymph nodes along with the joints in my knees, ankles, feet, elbows, wrists, and hands are severely swollen. The way I walk has become much worse in the last couple months and I fear I might be headed for a wheel chair.
Venting is half the battle and a great benefit from support groups since we all have been there too.
My rheumy started me slowly on Methotrexate to allow my body to adjust. I only took 2.5 mg orally once a week, then 5 mg and now 7.5 once a week which isn't knocking me for a loop. It has improved my overall pain level without making me sick all the time. On higher doses of Plaquenil (when I weighed more than I do now) my white count went so low that I got infections all the time. Then I developed a rare toxic reaction in my leg muscles and had to make the switch to Mtx. We are trying to avoid that with this 7.5 mg dose of Mtx now.
I also take 1 gram (1000mg) of Folic acid, since Mtx wipes out Folic acid from your diet. I wasn't on it to start with, but read about it and asked my doctor. He ran the blood test and my levels were pathetic, so he added this once a day dose to my program. That really helped me out a lot with energy.
When I was first diagnosed, years after pain symptoms had begun when I was 8 or 9, it was overwhelming. I ended up on an antidepressant for nearly 10 months to get me through the adjustment period. If you are having that much pain, then you need to treat it too.
Cymbalta gave me horrible nightmares so I was never able to manage it, but other neuropathy drugs are available that might work better. I used Gabitril for a long time to dull the pain from Fibromyalgia and improve my numbness and pain from peripheral neuropathy. It doesn't have a generic yet, but was less than the newer designer PN/Fibro drugs. My mother-in-law had a big improvement with her neuropathy pain on Gabitril too, although she took a smaller dose three times a day, while I had a larger dose twice a day. I'd still be taking it, but I'm allergic to some of the components and can't risk an anaphylactic reaction to stay on it. Surprisingly I'm still in less pain so we assume that I had some nerve repair while taking it. Most of my Fibro pressure points are still asymptomatic too which is great!
Ask your doctor to include your thyroid panel at least twice a year. When your thyroid levels are off, it makes the rest of you go wacky too.
If it's any help, I'm in way better shape now than I was 20 years ago. Medications have improved my quality of life significantly and I would encourage you to continue trying to find the right mix that will do that for you too.
Good luck and keep on venting anytime you need to!
I know how you feel when you say you "feel like a human pharmacy". I feel the say way. I'm am plaquenil, vit d, vit. c, vit b-12, fish oil, folic acid, metformin, muti-vit., xanax-prn, topamax, couple of other mirgraine meds that I take prn, and know I have this pain in my head that will not go away. I thought it was from the methotrexate, because it started about the sametime I started on that so i had my rheum. take me off the methotrexate, but the pain has not went away. I just went off of the Restasis for my eyes, I can no longer afford to take that, so I am also using the Gentel gel. and my dentist has a on a prescription toothpaste. It seems like everytime I go to the dr. it more meds and more test. I have a neuro. appt. on wed. I'm sure it will be more test and more meds. it's so frustrating!!
I wish my rheumy had started me on the methotrexate slowly because these side effects are aweful. I took my first dose of meth (10mg total) on Sunday evening and spent all day Monday vomiting and nauseated. Today I am still nauseated, but have not vomited yet. I am exhausted and still hurt just as bad and I have to say that I don't know why amedication that is supposed to make us feel better makes u s feel so rotten! I also took the first dose of Savella Sunday and decided to hold off of that medication until my body gets used to the methotrexate.
--dryRDH, I have a question for you regarding your low WBC and infections. I do not have low WBC's at this point, but when I saw my rheumy last week, he noted that I have a black streak running down my left cheek and a new larger one running down my left lower leg. He said this could be a toxic reaction to the Plaquenil and told me to get off of it immediately. Has anyone heard of this reaction? He said it happened because I have been on it for so long.
Thanks for the info and advice!