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Foot tingling and numbness: is it the RA or Enbrel?

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Posted 9/1/2008 12:55 PM (GMT 0)
Hi,

I'm new to this board. I've tried to search through old threads and still have some questions.

I was diagnosed with RA 6 years ago and have felt great on Plaquenil, MTX, and Enbrel since getting the combination of meds together during the first year. I started having some tingling, burning, and slight numbness in my feet a couple of months ago. The numbness is mild and is mostly on the tops of my feet. I went off Enbrel (last dose was 4 weeks ago) and the joint pain is really kicking in this weekend. I have done a ton of searching online and don't understand all the possible causes. I saw an orthopedist who saw nothing on the foot xrays. I'm working on getting an appt with a neurologist. Here are my questions:

If the cause is the Ebrel, has the tingling/numbness gone away after going off Enbrel? (I haven't noticed a significant change yet) Could that be a side effect without it having anything to do with possible MS? Does a link of this symptom with Enbrel mean that all biologics are out for me? I have not had any other symptoms associated with MS.

Could the tingling/numbess just be part of the RA (peripheral neuropathy)? I did notice that the morning soreness in my feet was worse than it had been in a long time around the time I noticed the tingling. But maybe that's what the orthopedist has pretty much ruled out by examining my feet and looking at the xrays.

Thanks!
Posted 9/2/2008 12:07 AM (GMT 0)
Hi YO!!

Hey we are on so much stuff, who knows what does what. tongue

And with so much congestion around our bones shocked

due to swelling

and the fact that our bones aren't exactly in right alightment

I am surprised we don't get more numbness with nerves getting trapped than we do.

You indicate the problem of tingling was there with and without the Enbrel

So I would say the Enbrel is safe. wink

You also said that the soreness in your feet was worse now that the tingling is there.

My guess is the soreness is due to swelling, and the swelling is blocking the nerves,  so you get tingling.

But I'm no doctor, just had tons of experience with this disease (11 yrs. of severe RA )

As to how you would react to other Biologics, they are all different,

so no need to worry here.

I've experimented with the Enbrel, humira and now on MabtThera,

To me MabThera is the gold of the pack. yeah Ra Ra go MabThera!!!

Sweety, I know RA is a dreadful disease.

Alot of symptoms associated with other horrible diseases (like MS)

are what RA victims suffer

I would be going to a RA specialist and posing my concerns to him.

A good one can diagnose many complaints.

It was my RA doctor that diagnosed a gynological problem (Endometreosis ) years before my gynocologist did at my Rheumys suggestion!!!

I would be seeing  a good Rheumatologit and discussing all you concerns with him.

I do recall my Rhemy pin pricking my feet and lower legs to see if I had sensation. I think he was testing for diabeties or enough circulation.

I told him that my toes were numb but he did nothing , and nothing bad has happened to my toes in the last 6 years. i think it is just a nerve issue that causes no problem, nothing to worry about

Good luck with your foot  Yo

I really don't think it is MS, just more of the RA

Let me know how you get on

Debbie 

 

Posted 9/2/2008 12:26 AM (GMT 0)
Thanks, Debbie. I am working with a great rheumatologist who I really trust. He says he doesn't think it's MS and maybe not the Enbrel, but he wants me to stay off Enbrel until we get some sense of what is going on. He's at a research university and is trying to get me in with a neurologist he knows. This is just me being anxious and wanting a better sense of what the possibilities are. It's reassuring to hear that you have had some numbness due to RA with no long-term effects. I have no problem living with these sensations in my feet--I'm just anxious about what it could mean and where it could be heading.

I read threads about people being anxious about going on MTX and/or Enbrel and personally I can't wait to find out that's it's okay to be back on Enbrel. I felt fantastic for 5 1/2 years.

Thanks for listening!
Ellen
Posted 9/2/2008 7:52 AM (GMT 0)
Hi Ellen

Yes I can agree that these medicines are frightening before we take them.

But after we have tried them, we love them and don't want to give them up. tongue

And if you get the news that your rheumy wants you to try the next bio, well that's good news also.

I hope this can all be done quickly Ellen, so that you can get back onto treatment.

Are you on any pregnosone?? have you been advised to increase this to lessen your grief while waiting for the decision as to the drug you are to go on???

I am on 10mg. per day, and have had it at differing strengths over the 11 years depending on my need. The decision is left to me how much i need and i do up the dose and them wean slowly down if ever i get under 10mg, which hasn't happened for years.

Catch you later

Debbie

 

Posted 9/2/2008 1:30 PM (GMT 0)
I have similar problems with my feet but it's coming from my SI joints and sciatic nerve being pinched or irritated. I can feel it down the back of my legs sometimes too. Does it get better when you get up and walk around or change positions? If so, then I bet it's a nerve in your hip or lower back.
Posted 9/2/2008 3:14 PM (GMT 0)
Debbie--I've never taken prednisone. I have a message in with my Dr. today and hope he can prescribe something to get me through this period. I think I would prefer an NSAID or starting a different disease modifying drug before going with prednisone. I've heard it can be tough to get off of.

Jeannie--thanks for the additional input. The orthopedist raised that possibility too, but couldn't pinpoint anything. I guess that's why I'm moving onto seeing a neurologist. I don't have the tingling in my legs, but activity does seem to help. It helps to hear what others have experienced so I know what to pay attention to and what questions to ask the docs.

Feeling a bit calmer,

Ellen
Posted 9/6/2008 9:57 PM (GMT 0)
Hey Ellen.. are you on any other meds? For stuff other than RA? I'm just wondering if it's not a side effect from something else.. please let us know how you are doing..
Posted 9/7/2008 8:49 PM (GMT 0)
Hi Ducky,

No, I'm not taking anything else. Symptoms haven't really changed and it's been 5 weeks since my last dose of Enbrel. I'm feeling pretty sore some days, so I'm anxious to get this figured out and get back on Enbrel or start something new. My rheumatologist is trying to get me in with a neurologist at his hospital, so I'm trying to be patient.

Thanks for checking in.

Ellen
Posted 9/7/2008 10:52 PM (GMT 0)
Hopefully they will get you in and soon.. I know I'm just miserable if I'm without my meds for too long... This tingling has me intrigued though.. I know some meds (like Topamax) have a side effect of fingers/toes tingling.. that's why I asked if you were on anything else.. I hope you are doing ok, please keep us posted!
Posted 9/25/2008 11:33 AM (GMT 0)
Hi,

Well, it's been 7 1/2 weeks since my last dose of Enbrel and really think I am seeing a decrease in the burning and tingling in my feet (although, of course, the RA is worse). I also had a small numb area on the top of just one foot and I think that is lessening. Despite the lessening of symptoms, my rheumatologist would still like me to see a neurologist and I have an appointment on October 8th. They're going to get me in for a nerve conduction study and EMG (needles, fun!) before then. My understanding is they hope to figure out what nerves are involved and pin down better whether the Enbrel is responsible. The promising news is that he has not ruled out retrying the Enbrel and, if we decide against that, we would look at the other biologics.

Feeling much, much better and calmer. Thanks for for those who held my hand while I was freaking out a few weeks ago. I'll report back when I know more.

Ellen
Posted 9/26/2008 2:57 AM (GMT 0)
 

Hi Ellen

Good to hear things are on the up and up.

I'm glad you are feeling calmer now. I know I feel alot safer when my rhemy is on the ball. It's good the worrying symptoms are disappearing. It makes you think it is the enbrel. Maybe this goes hand in hand for you with the enbrel and is nothing more than a strange sensation and nothing to worry about.

As you are probably aware it is all trial and error with each of us and so we slowly move through what's available

Thanks for keeping us posted

God Bless

Debbie

Posted 6/19/2011 5:52 AM (GMT 0)
If you are having MS symptoms and you need to come off the enbrel, the other TNF blockers will not be able to be used.
Posted 6/23/2011 12:13 AM (GMT 0)
Hi all,

I was having a lot of tingling and numbness in my feet at night and at first just thought it was from the arthritis swelling or something, then I read that lipitor (which I was taking) can cause peripheal neuropathy.   I took myself off the lipitor and haven't had the problem since.    Lots of times it's easy to ignore "other" causes of our symptoms because the arthritis can cause so many of them.    I do a lot of research on medications and their side effects.     I'm supposed to start Remicade infusions soon and stop my Humira.   I'm very scared to try yet another scary medication but I sure don't want to go back to the constant pain and debilatation that had before.   It's awful that we are all guinea pigs for these new medications but I guess we don't have much choice if we want to have some kind of quality life.

Hang in there everyone, who knows, maybe someday they'll be able to give us all new immune systems!   Probably won't happen in my lifetime but some day it'll happen.

 

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