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Can Enbril cause central nervous system damage or bring on the onset of MS?

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Rheumatoid Arthritis
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Posted 10/2/2006 3:19 AM (GMT 0)
Welcome Mouneera,

I'm on Humira and have been for some time I was on 40 every other week but started having one flare after another so know I take 40 every other week and and the two other weeks I take 80.It has help I am not flaring as bad as I was.

I to have had different places go numb the first time this happen it scared the you know out of so I was taken to the ER and was told that i hade BELL'S PALSEY SYNDROM and that the feeling would come back with in twenty four hours that was nine moths ago and I have to this day have not gott the feeling back.

I about teo months after that i finlly got in to see a Nurorolagist and he did a MRI and it came back that I did have a few small whit flexs and that he was not overley concerned but he did tell that I have enver had Beels Paylsey that he did not care that ER doc had to say.

I have had nerve test and and i have what they call inflamation in the linning of nerves and that causing a great deal of pain.I was put on Lyrica and I was on it for about five months and was pulled off of this med because it was causing my kiddneys not to function.

The info that every one has given you is right,but we have to weigh the good verses the bad.You will be all right and just remember that you have your HW buddies we are here to listen vent post we do alittle of every thing.
Posted 10/2/2006 2:44 PM (GMT 0)
I have been on Embrel for about 3 years.

I have stopped Embrel about 9 days ago.

Have you hear how long it takes for symptoms to reverse themselves?

p
Posted 2/4/2007 1:33 AM (GMT 0)
Hi!  I've been using Enbrel for about 4 months now and started having some tingling sensations and has progressed to electric shock sensations all over my body in different places throughout the day.  For some reason, it is worse as the day progresses.  Some of the electric shock sensations actually hurt a little.  It's really strange.  I've had RA for 20+ years, have been on every anti-inflammatory available, oral gold, gold injections, methotrexate and now Enbrel and methotrexate.  I knew about the risk of MS, and was concerned about it before starting therapy, but my doctor felt I had no choice and neither did I.  I have bony erosions in my ankles and wrists, and the ankle pain was so severe, I was not able to stand for a few minutes without severe pain.  Also, my ankle is deformed from the erosions now.  However, the Enbrel has helped improve the ankle pain dramatically, but now these weird sensations.  I contacted my Rheumatologist and have an appointment next Thursday to see him.  He said it could be many things and would need to examine me.  Needless to say, I'm very worried.  I do have a family history of MS, as my Uncle (father's brother) had it, and two cousins (a sister and brother, but only 2nd cousins), on my mother's side.  I've never experienced anything like this before, never.

Posted 2/4/2007 3:43 AM (GMT 0)
wow, sounds like some scary stuff. I'm starting Enbrel next week... and I'm having second thoughts. Would all of you who are, or have, experienced these adverse side-effects which may show signs of MS, recommend that I begin Enbrel? I mean I definitely can handle my current "quality of life," but improving it would be heaven-sent. My rehumy seems to thinkg I NEED to start enbrel because of my progressive AS. Hmm. I'm only 22 I don't want MS!!!! =(
Posted 2/4/2007 8:58 PM (GMT 0)
angelscry,

I Started up on Embrel again and still have the numbness.  I had stopped for 20 day and the symptioms did not go away. We are not clear if it's MS or anytings else at thsi point.  I have had a couple of MRI's and there are no signs on MS and the test are continuing to determine what I have.  I do have some nerves affected. The neurologist fist thought it was carpe tunnel syndrome, until it amnifested in my toes and face as well.  Numbness in the fingers, toes, lips, tongue and the eye lids.  I can function without pain and that's great.  One has to weigh the benefits ofliving without pain against the very very low chances of developing MS or some other problems while on Embrel and other TNf inhibitiors.  I am chosing to take the chance and my neurological problems appear not to progress to the point where they are impacting my ability to function.  They are mostly annoying at this point. 

One has to make the decision on one's  level of pain, and if one can with the pain.

Don't let a few  neurological problems here and there weigh too much in your decision.

Pierre

Posted 2/4/2007 9:07 PM (GMT 0)
amiloo,

Can you tell me where the tingling is taking place?

You said "all over my body" ?

Is it intermittent of constant?

My problems also seem to increase during the day and get worst towards the end of the day.

Here is what I have:  

Feet and hands - tingling and numbness - kind of like the when the numbness from the dentist wears off but it's not completely gone away.

Lips and tongue- tingling and numbness - kind of like the when the numbness from the dentist wears off but it's not completely gone away.  Getting quite nervous about that one because it was affecting my speech a coule times and my ability to work depends  very much on my ability to communicate clearly not like I am drunk and slurring words.

Eye lids - tingling and numbness - makes them feel very heavy and much slower to move.

All of these symptoms are more in the relm of annoying and not impacting my ability to live,   Unless they progress a little more.

That's why I am a little nervous. They are progressing but very very slowly and are also intermittent.  They sometimes reduce in intensity and once in the last month have almost gone away completely.

I will start journaling them daily to try to determine any links to my day.  It may be that they increase with my stress level.  Althought I  do not have enough data yet to detemine that.

Let me know about your symptoms.

Pierre

 

Posted 2/4/2007 11:51 PM (GMT 0)

Pierre,

The tingling sensations are mainly in both hands, a little in the arms below the elbow, in left leg, below the knee,

some in the right leg and foot.  The tingling is fairly constant and has been for about 2 weeks now. 

After about a week to 10 days, I started to get the electric shock sensations.  They feel like little shocks, and

they can be anywhere, literally.  I've felt those in my fingers, hands, feet, toes, legs, arms, back, eyelid, ear,

shoulders, etc.  The tingling is better in the morning and the electric shocks are definitely worse as the day

progresses.  Sometimes trying to go to sleep is a challenge with all the little shocks going on everywhere.

I'm sorry to hear you've experienced similar symptoms.  I see my Rheumatologist Thursday, and hopefully, will

know more after seeing him.

Amy

Posted 2/4/2007 11:57 PM (GMT 0)

Angelscry,

Please don't make any decisions based on what you read in this forum or any others.  It's completely a

personal decision as to whether or not to start any medication.  You should read everything you can

about any new medication, discuss the risks and benefits completely with your doctor, and then decide

for yourself whether you feel the risk outweighs the benefit.  Believe me, I did this before beginning

Enbrel, and even though I'm experiencing strange symptoms, I would not have changed my decision.

It was a good decision at the time, and I have complete faith in my doctor's expert advice.  I'll post when

I know what my doctor thinks after seeing him on Thursday.  I have also heard of so many people having

really good results from these medications, without any bad side effects.  I'm probably just one of the

unlucky ones.  Best of luck with your decision and feel better.

Amy


Post Edited (amiloo) : 2/4/2007 5:00:25 PM (GMT-7)

Posted 2/5/2007 3:18 AM (GMT 0)
amiloo,

Thank you for your prompt response and good luck to you.

From reading your symptoms, it sounds like you and I have very similar symptoms except I do not have the shocks.

My rummy has not been able to figure out what this is. I have had it for over six months and thank god it's not progressing very quickly, and does partially go away and comes back.

The first neurologist I went to see thought I had carpe tunnel syndrome because that's how it manifested in the nerve study. I am going to see a second neurologist next week and hoping for a diagnosis.

I will also go see Dr Davis at the UCSF, he is the leading researcher on Embrel, and the main guy who conducted most of the Embrel studies. I am hoping to find out more from him.

let me know what you find out and I will do the same.

Good Luck.

Pierre
Posted 2/5/2007 8:13 AM (GMT 0)
Pierre,

I hope that you have been checked for Lyme disease with a Western Blot test. www.igenex.com is the best tick reference lab.

Classic signs of Lyme disease are arthritis, numbness and tingling, headaches, neuro problems, vision, memory or cognitive issues, weakness, fatigue, twitching, neuritis, etc etc etc.

I was told I had early onset Alzheimers because the bacteiral infection was so bad in my brain. Now I was finally tested and diagnosed properly. I am now getting treated with antibiotics. If you have had it a long time you might have brain problems and nerve damage causing your symptoms. The lyme bacteria prefers the central nervous system and heart. Not everyone gets the arthritis with it but many do. It causes increased inflammation all over the body.

I don't know what Enbrel is but if you had an underlying bacterial infecton like lyme and were suppressing the immune system, it is possible this or taking steroids could make the infecteion worse or harder to treat.

I am just beginning my lyme treatment journey after being misdiagnosed for ytears. I hope that you will try to find a do who knows about lyme (not all do) by checking a lyme disease support group in your state. Then if the test comes back with no lyme you have not lost anything. If you do have lyme and you can get started on treatment it might save your life. People die from tick borne diseases.
Posted 2/5/2007 4:37 PM (GMT 0)
Pierre,

No problem.  Good luck seeing the Neurologist.  Let me know what you find out from Dr. Davis as well. 

Thanks!

Amy

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