enbrel neuropathy

[Guest guest]

Hello,

I was diagnosed with PSA about 1.5 years ago. It started as sacroiliitis and

spread into my hands and feet and lately all joints are painful.

I was on Humira for several months, but it became less effective and I started

to have some strange twitching issues.

My rheumatologist changed me to Enbrel which has been soo much better for me.The

last few months have been quite difficult for me, my pain has gotten worse..and

he finally check my vit d level..which was low. after the first supplement of

50,000 units, I felt tons better.

Now, however, I have had a strange burning pain on top of my right big toe just

before my toe nail. It is very painful at times. I think about chopping off my

toe cuz the pain couldn't be worse that way. Fortunately, it comes and

goes..but when it comes..watch out. My GP sent me for a MRI which according to

the nurse had " arthritic changes, but no real explanation for the neuropathy " .

They referred me to the neurologist, but they can't see me until the middle of

September. I am very frustrated.

She gave me a prescription for Neurotin, which I haven't picked up from the

pharmacy yet. I am just concerned about the side effects- i am a vet I can't

afford to be drowsy and confused.

Has anyone else had burning pain? I am worried it is from the Enbrel. I am

running out of options. I know there is Remicaide and Simponi I haven't tried.

The only other option I am aware of is methotrexate but I REALLY am not crazy

about that, as I am trying to get pregnant...and methrotrexate and unborn babies

do not mix.

I would appreciate any advice.

Becca

[Guest guest]

It wouldn't be gout would it? I only ask as my sister, who is only 27 has been

diagnosed with it and has the similar pain in her toe that you have. She doesn't

drink so its rather strange. Just thought I'd mention it. I hope you feel

better, it sounds incredibly painful.

All the best to you.

[Guest guest]

Hi Becca,

Don't know if I can't be much help with your Enbrel question but are you ar have

you been on a Statin? I have terrible neuropathy in my feet and hands after 6

months on a Statin drug. It cleared up about 50% after stopping the Statin, but

it will never go away. Enbrel only worked for me about 1 1/2 years.

 

I switched to Humira which has been wonderful for 4 years now. Would you please

expand on your " strange twitching issues " with Humira? I started strange

twitches and shakes in Jan. of this year and have 3 Drs. (PCP, Rheumy, Neuro)

scratching their heads with no real clues or answers. It never really goes away,

if I sit quiet I can feel them. Some days they get so bad they can (and have)

knocked me off my feet! Plus everything in between. I would love to hear your

thoughts and what made you and your Dr think it was the Humira. Mine ruled out

the Humira.

Thanks, Job in CT.

_\

[Guest guest]

Hi Becca: Just wanted to say that I am not on Biologic drugs but I do get the

burning pain you refer too. Usually it is in the toes of my left foot and

sometimes I get a burning pain in this one spot on the back of my lower leg. As

you described it is intense and comes and goes. I am seeing my Rheumy on the

3rd and intend to ask about this, so I will let you know what he has to say

about it.

As for being hesitant to fill the script for Neurotin, I don't blame you. All

the Med's are scary. I think I can safely say that most of us take multiple

Med's each day and adding another is always a cause for anxiety. I know that

you are a Vet so are very familiar with all the side effects and interactions of

these drugs so it gives you even more pause for thought than the average PsA

patient. Good luck and I hope you get a bit of relief soon.

Deanna

[Guest guest]

Hi Becca,

I, too, was just recently dx with peripheral neuropathy. I had been taking

Enbrel for two years and stopped in October 2009 as I was terrified I wouldn't

be able to recover from H1N1 if I caught it. I did indeed catch it (even though

I had stopped Enbrel a month earlier AND got the vaccine) and obviously

recovered. Anyway, instead of starting back on Enbrel in January 2010, my

rheumy suggested I take Humira because she felt it would lessen my psoriasis

symptoms. I really have not been seeing any good results from the Humira, and

in late June was dx with peripheral neuropathy. Go figure.

I will be seeing my rheumy next week and will report back on her recommendations

to me. I'm shocked that it's ok to take Enbrel if you're trying to get

pregnant. As a side note, my sister was on methotrexate for over 10 years

before she tried to get pregnant. Stopped for six months, got pregnant, and

started back on MYX once she finished breastfeeding.

Good luck,

Jana

[Guest guest]

Becca: I wouldn't worry too much about the neurotin. My 93 year old mother

takes it with no ill effects. Doubt that the burning sensation is from Enbrel

but it can cause some neurological problems so I would read the supplementary

info carefully to see if that burning you're experiencing is one of the possible

side effects before you stop taking it if it's working for you. (I don't

remember it being mentioned and never experienced it.)

The mfg of Enbrel also have a very helpful assistance line where you can call in

and actually talk to a nurse who's very well-informed on issues relating to the

drug. You might want to check that out, too. I called them when I'd

accidentally left my Enbrel out all night and wondered if I could still use it.

After much questioning, she told me that they'd actually tested how long you

could leave it out without harming it and I seem to recall it was like 3-4

days. Don't try it though!!!!! You can access their number on line or in the

info that comes with your prescription. Good luck . . . . .

Joanna Hoelscher

[Guest guest]

I get this pain like blood cells are nibbling on my big toe, similar to what you

described. It comes and goes, even with Enbrel. That is called a flare-up. It

seems to have an emotional component. Controlled breathing, meditation, therapy

a written inventory of what's bothering me all seem to help reduce the emotional

distress and then the pain goes away. Avoid stress. Seek therapy.