Nomad,
I had to reply to your questions/observations about Topamax. I’ve been on that, and am finally off of it. Before I went on it, my neurologist gave me a neuro-psych test as a baseline, and another after I’d been on it for a while. It is well known for the memory issues. I noticed that and balance issues too.
Good luck with it. It is primarily an anti-seizure drug and that is why I was on it. Is there any way to get drugs without side affects? 
Hi Mamabear I have the same issue, I turn 30 next week. Sjogrens has taken everything from me including my career and day to day sanity. I feel so alone and helpless at times, If you ever need someone to talk to I am always here! I know quite a bit about medical as well. Hope you have a blessed day! Allison
Has taking you off all meds stopped the tremors as this is a side effect of some meds. I would get a second opinion be both a rheumy ànd neuro. I explained some of my symptoms to my new neuro, ones the old one sàid were seizures, and he is repeating all tests. He said he thinks some of my symptoms are not seizures but likely a disease in my ears. My rheumy hasnt given up on me yet, but he does seem about to. Doctors are human and are frustrated by us. Just move to another one. I am truly sorry you have this to contend to along with SS. Hugs
I was just thinking of this site, and out of the blue got an email today re this topic of Topamax. I can’t recall the last time I was here, perhaps one year. I still take Topamax for migraine prevention…only 50 mgs, some docs think I should take more to really stop my migraines completely. It is effective. But, particularly when I am nervous or anxious, I can barely remember anything at all and look mentally challenged. It is a horrible thing. No way would I take more. I am grateful for its help, but recognize the side effects are powerful and potentially costly.
I did move on to a different rheumatologist, and that has made all of the difference. She has me on three different prescriptions that help me so much more.
In regards to the topamax, I was on that for years to help control seizures, but requested to be taken off, side effect reason.
I know how you are feeling. Frustration seems to be my biggest issue! Everything frustrates me right now. Was just in the diet section and was getting angry that we have to deal with our every growing list of daily battles (dry eyes, mouth, fatigue), but now if we don't eat anything we love it will help. I can't spend quality time with my family cause I'm always tired. I can't work all day cause I need to close my eyes at lunch. Told my teeth will get worse (there already bad), now food. What can we have? What can we do? Everything we do do takes 2 to 3 times longer cause we don't have the energy to finish it. Just so damn fed up with it all!!!
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I am so sick of it all too. I am trying not to get too upset with people. They still expect me to keep up with all of their requests. I can barely shower and have energy to make a meal. The meds don't help and give you other side effects to worry about. No one but those of us that have this very complicated and all encompassing disease even has a clue. That includes the doctors. I am sick of being a guinea pig. It is a guessing game. Until research gives us some more options, I think I am going to go off the stupid meds and see what happens then. Can't get much worse I don't suppose. Sorry for ranting, but I know all of you on here feel it too. May they soon find a cure or a medicine that actually works!
I’m finding my new normal, but the hardest part is saying “no”. I’m learning to do that. I’m also doing about the same amount each day. Starting to exercise again. I miss things like pop, but am feeling a bit better than last year at this time. A year to make slow progress, and learn to rest when needed.
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A good friend told me to just answer, "sorry that's not going to work for me!" If they think they are frustrated, try being me. I am used to work on a farm, using the log splitter by myself for hours. Now making a meal plays me out. Sometimes I feel like I want to scream that I am still in this tired body and want to go and do and be who I really am. I understand finding your new normal. I guess I haven't accepted that yet. I keep hoping the meds will take me a little bit closer to what my old normal was.
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The fatigue you all mention is one of many of my problems.it is overwhelming and effects my relationships with everyone,because they can’t count on me . Making plans is a real problem.As you must know I don’t know how I will be when the time comes.
Anyone on her had any issues with Methotrexate and Folic Acid while taking Plaquenil? I have been taking Plaquenil since August of last year and it wasn’t doing anything so they added Methotrexate and Folic Acid to combat the negative side effects of the Methotrexate and I’ve been taking a corticosteriod for almost a year now which I’m sure is not good for me in the slightest. Just seeing if anyone has any advice on how to deal with the stomach issues this is causing and the serious brain fog sometimes.
I took that exact combo minus the steroids for a while. My belly did not well with methotrexate, and it did little for symptoms. If it’s helping your symptoms, you can ask inject it instead of taking pills. It’ll bypass your stomach that way.
Personally, I wound up switching to leflunomide. Much better for my symptoms, including fatigue. Much better for my belly.
I am interested in the book you are discussing
I am currently taking the same combo minus the steroids. I have been on it for about 5 months now. The nose ulcers and joint pain are improving but not the fatigue or the skin rash. I also suffer from severe GERD and acid reflux so, I take pantoprisol 2 pills twice daily and ranitidine 2 pills daily to help with nausea. I take Amitriptyline daily for migraines.
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I’m so sorry.
Feeling desperateness because the doctors are they looking at you as if they don’t believe you or is it because they simply don’t know what to do for me in my case I have discovered that what I eat has more of an impact on me than the medications they give me for instance protein foods such as legumes nightshade’s of us but I actually have a better opportunity at Better Days as you can tell by now I am using the microphone to type because my fingers are too stiff good luck on your Sjogren’s Journey and hugs from California
I’m so sorry for your pain I am using my microphone to type because my fingers hurt I have discovered the Tremors for me or really a bad bad case of the chills when I am going down I get the chills and they can last for days and days and days the important thing is to not give up to believe to fight back and find out what things impact you food noise lights oh my God sjogren but I actually feel well enough to you to water my garden clean my house again and play with the grandchildren thank you Father in heaven