Enbrel- Read the small print warnings!

Enbrel may seem great, but it has its dangers. After years of suffering with Ankylosing Spondylitis (AS), I was placed on Enbrel, which made my symptoms disappear. I was able to do all the activities the AS had kept from me. However, after a few years, I started having a lot of numbness and strange sensations in my legs and arms. It turned out that I was suffering from demyelization of the central nervous system, which is one of the "rare" side effects of biologics such as Enbrel and Humira (it's rare until it hits you!). I was pulled off Enbrel immediately. The nerve problems got worse, and then, after MRIs and a spinal tap, I was diagnosed with MS.

Read the warning labels that come with Enbrel! It states that some users have suffered from demyelization of the central nervous system. The chance seems rare until it happens to you! I'm worse off now than before starting Enbrel.

When I was first considering Enbrel, my rheumy told me that the chance of getting MS was too remote to even consider, and that those who got it during the testing phase probably would have gotten MS anyways. I was also told that if I were to have any nerve problems, it would just be temporary and would clear up after a while when off Enbrel. I have no history of MS or any neurological problems in my family, looking back many generations. The odds of getting MS from Enbrel are low, but any chance of getting MS should not be dismissed so easily. I have since discovered that the odds are probably not as low as Immunex Corporation and Amgen would like all to believe, as I have come across quite a few others who ended up with nerve problems.

Gbash, that's both terrible and extremely scary! The worst thing is that ceasing usage of Enbrel generally won't rectify the problem (but can stop it worsening). What have you been told about your prognosis?

It's concerning that I will probably be taking Enbrel for the next 10 years :/

The sooner LX2931 (http://www.medicalnewstoday.com/articles/159805.php) becomes available, the better. From what I've read, this drug is substantially safer than MTX and could be as effective, and much cheaper, than biologic injections. (Phase 2 trials, the proof of concept, are half way there, following this is phase 3 trials then approval - hopefully).

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Symptoms (from Wikipedia, for anyone interested/concerned)
Demyelination results in diverse symptoms determined by the functions of the affected neurons. It disrupts signals between the brain and other parts of the body; symptoms differ from patient to patient, and have different presentations upon clinical observation and in laboratory studies.
Typical symptoms include:
blurriness in the central visual field that affects only one eye; may be accompanied by pain upon eye movement;
double vision;
odd sensation in legs, arms, chest, or face, such as tingling or numbness (neuropathy);
weakness of arms or legs;
cognitive disruption including speech impairment and memory loss;
heat sensitivity (symptoms worsen, reappear upon exposure to heat such as a hot shower);
loss of dexterity;
difficulty coordinating movement or balance disorder;
difficulty controlling bowel movements or urination;
fatigue.

I used enbrel for 10 years and developed MS symptoms after 9 years but I was not aware they they were MS symptoms at first. Neurologist did a brain MRI which was neg.
Saw my rheumatoid Dr. who took me off the enbrel. 0.2% of people on enbrel can develop these symptoms. It is unclear if it is from the enbrel or if these people were going to develop MS no matter what. It seems that the people that it is enbrel related do get better once off the enbrel This also means that no other TNF blocker can be used, ever again. I ended upwith the spinal tap which was a simple procedure. The aftermath of the spinal tap is a whole other story. I had debilitating headaches for 2 days while taking caffeine, naproxin, Tylenol, tramadol. Ended up in the hospital for a procedure called a blood patch where the anesthesiologist injected 30cc of my own blood into the subdural space where the spinal tap was done. Add 500mg caffeine to thr IV and I was sent home. Felt great for a few hours then the headache was back. Lay flat and it was gone. Set up and it was back. Another trip to the hospital fir IV caffeine,IV analgesic and another 2 liters of fluid. Went home and as of4 hours later, no headache at all. I believe that the high dose caffeine is what worked best. Best to all who are on TNF blockers. There are millions using these drugs but like me, if you happen to develop MS then it doesn't matter if the odds are only .2%

My next door neighbor has been on numerous arthritis and fibro meds for years...she
is now diagnosed with MS. She's only in her early 40's with a 10 year old daughter.