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Connection between Copaxone and Stiff Person Syndrome?
Posted: Sat May 31, 2014 6:00 pm
by Silverfox
As I understand it, Copaxone's shifts the balance of inflammatory Th1 cells to anti-inflammatory Th2 cells. One of the roles of the Th2 cells is to develop and/or express existing antibodies. After taking Copaxone for 2.5 years, I began experiencing muscle tightness that was very unusual - something I had never had before. My doctor was astute enough to recognize that the symptoms may not be MS related and ran several blood tests. The tests indicated significantly elevated Gad antibodies and I was diagnosed with Stiff Person Syndrome. I was advised that Stiff Person Syndrome occurs in "one-in-a million" people (literally). Has anybody else out there been tested for the Gad antibody or been diagnosed with Stiff Person Syndrome after taking Copaxone?
Re: Connection between Copaxone and Stiff Person Syndrome?
Posted: Sat May 31, 2014 11:01 pm
by NHE
Silverfox wrote:As I understand it, Copaxone's shifts the balance of inflammatory Th1 cells to anti-inflammatory Th2 cells. One of the roles of the Th2 cells is to develop and/or express existing antibodies. After taking Copaxone for 2.5 years, I began experiencing muscle tightness that was very unusual - something I had never had before. My doctor was astute enough to recognize that the symptoms may not be MS related and ran several blood tests. The tests indicated significantly elevated Gad antibodies and I was diagnosed with Stiff Person Syndrome. I was advised that Stiff Person Syndrome occurs in "one-in-a million" people (literally). Has anybody else out there been tested for the Gad antibody or been diagnosed with Stiff Person Syndrome after taking Copaxone?
Have you ever had your magnesium levels tested?
Re: Connection between Copaxone and Stiff Person Syndrome?
Posted: Sat May 31, 2014 11:05 pm
by NHE
Re: Connection between Copaxone and Stiff Person Syndrome?
Posted: Sun Jun 01, 2014 9:15 am
by lyndacarol
I am especially interested in this paragraph:
What is Stiff-Person Syndrome?
Stiff-person syndrome (SPS) is a rare neurological disorder with features of an autoimmune disease. SPS is characterized by fluctuating muscle rigidity in the trunk and limbs and a heightened sensitivity to stimuli such as noise, touch, and emotional distress, which can set off muscle spasms. Abnormal postures, often hunched over and stiffened, are characteristic of the disorder. People with SPS can be too disabled to walk or move, or they are afraid to leave the house because street noises, such as the sound of a horn, can trigger spasms and falls. SPS affects twice as many women as men. It is frequently associated with other autoimmune diseases such as diabetes, thyroiditis, vitiligo, and pernicious anemia. Scientists don’t yet understand what causes SPS, but research indicates that it is the result of an autoimmune response gone awry in the brain and spinal cord. The disorder is often misdiagnosed as Parkinson’s disease, multiple sclerosis, fibromyalgia, psychosomatic illness, or anxiety and phobia. A definitive diagnosis can be made with a blood test that measures the level of glutamic acid decarboxylase (GAD) antibodies in the blood. People with SPS have elevated levels of GAD, an antibody that works against an enzyme involved in the synthesis of an important neurotransmitter in the brain.
Pernicious anemia is the extreme form of vitamin B12 deficiency.
Re: Connection between Copaxone and Stiff Person Syndrome?
Posted: Mon Jun 02, 2014 4:34 am
by Silverfox
Yes, I have had both tested (I researched the same info you posted) and levels are normal. Thank you for your reply, though. I believe there is a hospital in Chicago (RUSH?) that specializes in this and I continue to search for answers (even though they may not be there). If you ever find anything on the issue, I will continue to check back. Thanks.
Re: Connection between Copaxone and Stiff Person Syndrome?
Posted: Sat Oct 18, 2014 2:03 pm
by bonsaigirl
I was diagnosed with MS 23+ yrs ago. 15yrs ago I started on Copaxone. For the 1st 6 months, I had steady improvement, which plateaued and only gradually declined over the next 15 years. Then it was determined that I
don't have MS at all. I have Still Persons Syndrome. At this point I was told to taper off of the Copaxone. It took about 2 wks, and my symptoms declined to the point that I could not walk unassisted. I think the Copaxone helped treat my SPS, not caused it. I think you should be re-tested to see if you even have MS, or if you had SPS to begin with. In 23 years, I never had an abnormal MRI. I took doctors that long to figure out Something was missing.
bonsaigirl