Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Embrel.. Need some help here

First time to log on and looking for help. My husband was dx with AS in 1990 and has been through a gamet of NSAIDS and has been taking Voltaren for the past few years. For the first time Sed Rate is up and he is not sleeping due to pain everywhere esp under shoulder blade. Now Rummy is saying he needs Embrel, but this is very scary. Heard bad side effects. Can anyone help with their experience???

I had one of the the bad side effects that you are afraid of. After about 10 months on enbrel I was diagnosed with MS. They took me off of enbrel and the MS symtoms have mostly gone away. That said I would still recomend that your husband try it. Just keep in close contact with your doctor, and watch for dizzyness, tingling arms or legs, and lose of strength. Enbrel put my AS into remission (no pain). The side effects are rare. Just make sure you have a long discussion with your doctor on what to look for.

Steve, thank you for your reply. Do you just have MS symtoms or does the doc say the MS is something you have to deal with always? That is a pretty scary side effect. I'm sorry to hear that has happened to you. For one day of pain free, he may say it is worth the risk. My husband's Rummy says that we do not need to get a second opinion about treatment, but that leads me to be a little hesitant too. We're looking at a spine/pain clinic, but trying to stay off all the pain meds.

Hi this is from another Steve sbcook2, I also went into MS or cerebralpalsy type of tremors after 4 months of self injecting Enbrel. It cleared up after a few months, but I had one whole day of shaking like crazy and jerking after an injection. I had hopes it would help but my rheumatologist made a formal complaint to the Enbrel people although he has other patients who it works for. It is a tricky drug, some deaths but also some people with relief, be careful and watch it closely, you are looking for redness after a shot and , make sure no colds or infections or it will make you twice as sick and as for my like the Steve from Atlanta I had MS symptoms, I have some now but the neuro people say is just neuropathy from AS making things press on nerves and nerve messages not getting out right. Hope this helps and peace and love to you and all. steve sbcook

Excuse the mistake Steve about Atlanta, you know how it is with AS sometimes the mind slips Ha, I too went through the tremors and shakes and MS symptoms from enbrel they stick that part on the end of the advertisement on tv and say it quietly may cause neuro problems. take care, peace and love to all, steve sbcook

Hi Grace,

Have you checked out the 'Anti-TNF and Biologic Medication' Forum ? You'll find several discussions on Enbrel there that might be of interest to you.

Cat

The neurologist said they didn't know if I really have MS, or it is just something that Enbrel makes look like MS. The neurologist talked with the company that makes enbrel, and asked them if it would go away when the enbrel is stops doing its thing, and they said they don't have enough data. My Rheumatologist has many patients on enbrel, and said he has only had two patients that have had problems. I don't know what the other patients problems were. I am doing much better now, I can run again, but the AS is back.

Just got back from Rummy and discussed concerns re Enbrel. I told him I had heard from some people that were having signs of MS with the med. He said "It could just be coincidence, who knows." Then proceeded to encourage the medication. I think we've decided to go back to a high dose of Indomethicin for a few weeks to see if sed rate drops. Who knows. It's worth a try right! Hope it is not too hard on his stomach. Maybe later try Enbrel? Hope you guys get relief from the MS symptoms. It is my first time to talk to anyone else with AS. You seem to have a great support system! Thanks for the help!

Thanks Dorothea we will check it out.

No problems here. I've been on Enbrel for over 3 years.