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Joined: Jul 2012
Posts: 160
First_Degree_AS_Kicker
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OP
First_Degree_AS_Kicker
Joined: Jul 2012
Posts: 160 |
Hi all I wanted to know if any one could give me advice. I am thinking of trying biologics. My mom had ms, and i understand that a connection exists between ms and biologics. I read that one should not take them if some body in the family had ms. I also read that the drug kineret does not have ms as a side effect. Another question i have is if one gets ms from biologics,does it go away when one stops the medicine? Would be happy to hear your opinion. Thanks alot! Bman
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Joined: Oct 2008
Posts: 895
Master_AS_Kicker
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Master_AS_Kicker
Joined: Oct 2008
Posts: 895 |
Hey,
I got MS from Enbrel almost three years ago, and it has not gone away. There was no history of any MS in my family.
Getting MS or any other dangerous side effect from a biologic is rare, but it is something to consider. In the early stages of my nerve damage, if I had known that the biologic could have been the culprit, I would have quit it sooner, possibly averting some of the damage.
If you decide to take a biologic, just be sure you remain alert to any early signs, such as tingling in your hands or feet and numbness.
--Greg
AS symptoms started 1991. Official dx in 2006 with HLA-B27+, fused SIJ, bone spurs in back, extreme rib/hip pain, and other family with SpA. Started Enbrel in 2006 with good results, but stopped in 2010 due to nerve damage (MS) from it. Getting good results with no-starch diet since 2011.
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Joined: Sep 2001
Posts: 2,192
Major_AS_Kicker
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Major_AS_Kicker
Joined: Sep 2001
Posts: 2,192 |
I also got MS from Enbrel, and I also have no family history of MS. The Enbrel worked great for the AS, but I started feeling dizzy all the time, and then I fell a couple of times for no reason. I still have some problems from the MS. I was on Avonex for several years. I think the decision should be between you and your doctor. If you do go on it keep a close eye out for signs of MS. I had about 6 months before I started feeling dizzy.
Steve Orchard, Running from AS & MS
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Joined: Dec 2003
Posts: 1,368
Bronze_AS_Kicker
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Bronze_AS_Kicker
Joined: Dec 2003
Posts: 1,368 |
Hi
My cousin also developed MS on Enbrel after taking it for 6 months. There was no history in the family with MS. She is off the Enbrel and on a med for the MS and continues to have problems with her balance and her vision.
Janet
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Joined: Oct 2012
Posts: 190
First_Degree_AS_Kicker
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First_Degree_AS_Kicker
Joined: Oct 2012
Posts: 190 |
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Joined: Jan 2010
Posts: 225 Likes: 1
Second_Degree_AS_Kicker
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Second_Degree_AS_Kicker
Joined: Jan 2010
Posts: 225 Likes: 1 |
This is well scary indeed, especially as I've been on Enbrel for the past 3 and a half years. I'm in the process of cutting down to -hopefully- stop eventually. But in the meantime, could you detail a bit the symptoms we need to watch out for and their intensity ? I mean for example when you say tingling in the hands, can it be just a tiny tingle or does it have to be quite intense ? Thanks a lot !!
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Joined: Dec 2003
Posts: 1,368
Bronze_AS_Kicker
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Bronze_AS_Kicker
Joined: Dec 2003
Posts: 1,368 |
Hi My cousin started to fall a lot and she developed double vision. She also woke , with a numb leg one morning. It was very obvious symptoms of MS. Some patients also developed Lupus and increased joint pain.
Janet
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Joined: Jul 2010
Posts: 1,191
Steel_AS_Kicker
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Steel_AS_Kicker
Joined: Jul 2010
Posts: 1,191 |
I was rushed to the ER during one of my first Remicade infusions. It made my heart rate increase from a resting pulse of 65 to 140 beats per minute just sitting there . I had a previous 6 months of infusions of iron and another set of infusions of a RA med and never had that happen with those other meds. If you are going to take a med, maybe go for one that does not have MS as a side effect, since your mom has it.
Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year. www.fatsickandnearlydead.com excess fat/oils = pain for me recipes for raw food on Youtube "raw food romance" and "healing josephine" Josephine is in remission from RA after two years by change diet/exercise
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Joined: Dec 2003
Posts: 1,368
Bronze_AS_Kicker
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Bronze_AS_Kicker
Joined: Dec 2003
Posts: 1,368 |
Hello
I think all the biologics have the side effect of M>S.
Janet
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Joined: Oct 2008
Posts: 895
Master_AS_Kicker
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Master_AS_Kicker
Joined: Oct 2008
Posts: 895 |
Marion,
For me, my MS started as some tingling (pins & needles) in one foot at the end of a 5K run. The tingling would last about 15 minutes...until I cooled down. The tingling got more pronounced (and painful) during the next few days and then started in my other foot also. Each day, the tingling lasted longer and progressed up my legs until all my left leg would tingle and go numb for an hour or more during and after running. Then it progressed all through my right leg. At that time, my left arm started going numb, with tingling in my hand. Then my right arm started having problems. It then spread to my face, neck, back, and abdomen (about 90% of my body).
So, I went from no problems to painful tingling and numbness within three weeks. After that, I started to lose strength in the left half of my body. I also became overly sensitive to light and noise, which would cause me to have migraines.
AS symptoms started 1991. Official dx in 2006 with HLA-B27+, fused SIJ, bone spurs in back, extreme rib/hip pain, and other family with SpA. Started Enbrel in 2006 with good results, but stopped in 2010 due to nerve damage (MS) from it. Getting good results with no-starch diet since 2011.
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