Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Flareup in SI Joints return with a vengeance!

Yep no more TNF's because of the neuropathy...needs to be checked to see what is causing it...some people have ended up with MS...including people on this site...Plus sometimes you are stuck with neuropathy...not fun...I was up in the night again last nite...It wakes me up my hand up to my elbow goes to sleep and vibrates getting hot and feeling like a tight sock is binding it.:(...my feet hurt to walk, and sometimes driving is painful...just to hold the steering wheel.

I think as far as less invasive meds it would be DMARDS and then like John is telling you antibiotics and diet...Important to note not all people respond to diet...you have do as Carol's book suggests and experiment....The diet forum is very helpful with tips.
I hope things get better:)

This is scary stuff. I have been noticing the tingling in my hands and feet. I have noticed the occasional numbness in my feet. The other day I woke up and my whole right leg was frozen for about a minute. I couldn't walk on it or anything. I thought this was just because I was sleeping on it funny, but then I realized that I have actually never experienced anything like this before. I'm praying for my life that I don't have MS now, seriously scared.

I think I will come off enbrel, whether I am advised to by my doctor or not.

I really really hope your symptoms are temporary too.

So sorry Seb, hope it goes away quickly.

Hi Seb,

Wow that doesn't sound too good, but it is hard to tell if it's the Enbrel or not, unfortunately there is only so much experimentation you can do with these drugs because it is best to be consistent with them. I saw my rheumy the other day and he said it really is a mystery why I have the tingling in my hands, it could possibly be carpal tunnel? But I know for a fact that when I start Humira again, I got a lot more tingling pain happening.

Have you seen a neurologist at all? If not I would be as diligent as possible in getting an appointment with one, that is my plan right now, but supposedly they are hard to get appointments with. Keep track of your symptoms and write them down, you might notice an increase or hopefully a decrease as time goes by without Enbrel if you decided to go off it. From personal experience don't be surprised if you start flaring up again, I know for me when I went off Humira I was shocked that I could have pain like that again. I don't mean to scare you, but just be mentally prepared for situations like that, sometimes we forget what we are dealing with because we've had so much success with western medicine. All the best!

BigCrunch: I would definitely try Enbrel since that is what the Rheumy is suggesting. For my severe SI pain, the only thing that helps is biologics to put it into remission. I tried SI shots, NSAIDs, Methotrexate, stetoids, physical therapy, diet, etc... Hopefully, you won't get the sharp needle pain in your hands on Enbrel. Have you tried a steroid dose pack? The dose packs sometimes help bring me out of flare.

I agree!....I had the leg weakness myself the other day...I was actually sitting (going to the bathroom) and when I went to get up...my left leg...didn't get up my ankle rolled over...came came within seconds but sure scared me!...I have an MRI on July 2nd...hoping it is clear!...

Seb, have you told your doctor?
Laurel

Hi Winter,

Thank you for your suggestion, my rheumy filled out an application the other day for my Enbrel prescription so I am hoping to get started on it within the next few weeks!

Hi BigCrunch- glad to hear you will be able to start Enbrel in the next few weeks. Hope all goes well and you get pain relief after the first shot.

Keep us posted.

Shari

BigCrunch,

Good luck mate! Hope you see some good results.. let us know how you get on!

My GP just told me that I don't have MS, which is a huge relief. He also said that nerve damage is unlikely which I found interesting.. just hope he didn't miss diagnose me, otherwise I'm really happy about that. Now I have to make the decision on whether to continue Enbrel or not.. tough choice.

Seb, you might want to go on the site www.enbrel.com....has info there re side affects.
And I would still talk to your Rheumi...about whether or not you should stay on Enbrel...The way mine explained it to me is that Enbrel doesn't cause MS just unmasks it. I am happy for you too..But can I ask how the GP was able to say that?...Based on your symptoms or an MRI?...

Hope the symptoms go away and your are able to stay on Enbrel.
Laurel