Recent Posts

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Living With Sjogren's / Re: Cervical Stenosis surgery
« Last post by SjoGirl on Today at 01:16:41 PM »
Not yet, but I'm having a consult with a neurosurgeon in early November to discuss. So far docs -- pain doc, nuerologist, and rhuematologist -- have said that surgery won't help.

My niece had surgery several years ago and it relieved her pain immediately. She has not had a recurrence, though has many other issues with arthritis.
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Living With Sjogren's / Re: Going off of Gabapentin
« Last post by SjoGirl on Today at 10:36:00 AM »
Hello Elaine,

Leave it to you to provide helpful information and support. I am not on much Gabapentin, but like you am on it for nerve pain. I am concerned about what might happen after I fully titrate off and it's out of my system. The neuropathic pain had become unbearable and often kept me awake at night making me VERY cranky the next day and not able to function well.

I had an updated C-spine MRI last week and have a neurosurgeon checking the results to see whether surgery might help. My neurologist says the neuropathy (which is all up and down my left side) is partly C-spine partly Sjs, my rheumy says not so, it's all from your spine (now that my rheumy also has the new MRI I'm asking if he's sticking with that diagnosis). I have been know to say that I wonder if I had a stroke at some point (though I've had brain MRIs which show nothing to suggest that I did).

I am sad to have to experiment with meds again because I had been doing so well. This all seems to have cropped up the longer that I"ve been taking Imuran, which is helping enormously with arthritis pain and swelling. I wonder if the two drugs don't care for each other.

FYI my neurologist added Cymbalta to my med list, I only took it for a few days and hated it so stopped (making him I think pretty unhappy, but so be it).

So sorry to hear about your ongoing struggles, but will say that you are an inspiration, if you can keep going I can keep going!

Thanks,

SjoGirl
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Living With Sjogren's / Re: Going off of Gabapentin
« Last post by Carolina on Today at 07:50:52 AM »
Dear SjoGirl,

I tritrated down and off Gabapentin in October 2016 thinking it might be the cause of my myoclonus and syncope, which started in April of 2016.

When I was completely off Gabapentin, my life was unbearable because I take it for the nerve pain of small fiber neuropathy.  Without Gabapentin my skin felt like it was on fire.  I had no relief at all from the sensation that all of the skin on my upper body was on fire.

I spent 6 weeks without Gabapentin and my myoclonus and syncope (falling to the ground suddenly) did NOT STOP.  So I went back on Gabapentin and the fire was gone again (thank goodness).

It turned out that Cymbalta was causing the myoclonus and syncope.  I found that Cymbalta was the cause by accidentally forgetting to renew the RX in April 2017.  The myoclonus and syncope suddenly stopped and I thought it was a miracle (which I don't actually believe in, but hey, I embraced my change!).

Then after three months I started Cymbalta (August 2017) and the myoclonus suddenly reappeared. 

I am truly struggling without  Cymbalta since the pain of my arthritis is not controlled nearly as well by the antidepressant I am currently taking (Amitriptyline) in lieu of Cymbalta.

By the way, I took Cymbalta for 6 years before it began causing myoclonus and syncope. 

We are so very weird in how medications work and don't work for us. 

Gabapentin is so important to me, SjoGirl.  I take 3600 mg a day and still have very mild tingling and burning in my cheeks and lips.

It turns out that almost all of the anti-seizure drugs and anti-depressant drugs have a very low incidence of myoclonus and syncope in patients who are part of the large trials of those drugs.

I wish you all the best in your quest to find stability!

Regards,  Elaine

 


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Living With Sjogren's / Re: Rituxan
« Last post by Jasper on Today at 06:27:50 AM »
Susan, you have Rheumatoid Arthritis. Rituximab is FDA approved for Rheumatoid Arthritis. If I were you, I would ask my Rheumatologist about trying Rituximab infusions. It has been a miracle medication for me.
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Living With Sjogren's / Re: Hello Very Low and on verge of giving up.
« Last post by irish on October 16, 2017, 09:49:24 PM »
Regarding my previous post regarding the estrogen cream......I don't really know if the gynecologists use it themselves, but I know that they prescribe it to their patients.  I have off days a lot. Irish
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Living Life In Spite of Sjogren's / Re: For You Prayin Folk
« Last post by A Mom on Spin on October 16, 2017, 05:49:38 PM »
Prayers.  Always!
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Living With Sjogren's / Re: Confusion and auto accidents
« Last post by Deb 27 on October 16, 2017, 03:34:52 PM »
Memory loss or cognitive issues surely cause us concern. I didn't see any of your medications listed. Check them carefully. I was prescribed klonipin .5  for sleep and after about a year, I realized it was causing my problems to be worse. I also started taking a multi vitamin and some iron b/c my ferritin was low.  So far, it is helping me.  Also, if I quit taking my antidepressant, I have some focus issues.   Don't give up, keep looking for a solution. 
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Living With Sjogren's / Question about myasthenia gravis
« Last post by gurs on October 16, 2017, 01:01:25 PM »
can anyone tell me how Myasthenia gravis gets diagnosed? symptoms for those of you that have it?

thanks
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Living With Sjogren's / Re: cold and cortison
« Last post by bluegardenia on October 16, 2017, 11:42:20 AM »
after nine days situation worsened.on saturday i went to th doctor, he said ok to cortison for 4 days and then half dose, no areosol, but wash nose with saline solution and steam baths.he said to stop nac because it will cause more mucous. i felt better for one day and since this morning mucous augmented and is more and more thick. its not yellow, i dont have fever but i never had this in  my life. at this point im afraid its sinusitis, im afraid ill have to take antibiotics because of my allergies. ill go back to doctor tomorrow.
how did you have a diagnosis of sinusitis?n and what did you do? thanks
 it means that every cold ill have sinusitis?? i wash my nose all the time!!
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Living With Sjogren's / Going off of Gabapentin
« Last post by SjoGirl on October 16, 2017, 11:21:47 AM »
Hello all,

It's been quite a while, both because my sister is still living with end-stage cancer (my last living sibling) and I had been feeling better. I've also been on the Smart Patients group and following those posts.

For those of you taking Gabapentin for nerve pain if you had to stop taking it what might have been an alternative? My myoclonus is back so my neurologist said to stop taking it (I'm on a very low dose so can tirate off quickly and I hope without too many issues). Ironically, the Gabapentin was also to help control myoclonus (and help with migraines) so odd that it might be the cause. Maybe it's a result of taking Imuran, which has helped enormously with my arthritis pain.

I'm more comfortable asking this question here than Smart Patients, I look forward to hearing from any of you who can assist.



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