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Posted 9/2/2015 8:29 AM (GMT 0)
Has anyone experienced neuropathy from any of the anti-TNFs? I acquired it in my feet a little over a year ago after the loading doses of humira. I see a pain mgmt doc and she is still adjusting my meds. I've had a few weeks of relief over the summer but I feel like it's getting worse and am really discouraged. I returned to remicade after 3 months of humira and am now concerned that remicade may be preventing good mgmt. I don't want to stop remicade because it has been such a great drug for me and I would most definitely flare. Any feedback is welcome.
Posted 9/2/2015 8:33 AM (GMT 0)
Haven't heard of that, but that doesn't make it illogical. Is your blood sugar stable? Neuropathy from the Pred? Don't give up the Remi without a fight!
Posted 9/2/2015 8:44 AM (GMT 0)
Yes, all of my lab work was normal last year when I was going through the differential dx and seeing different specialists. I had all the usual neuro testing and some not so usual testing such as small fiber neuropathy. I also had a glucose tolerance test because the neurologist explained that some people present with neuropathy before ever being dx with diabetes.
Posted 9/2/2015 6:21 PM (GMT 0)
Seems it could also be related to autoimmune...I know of 5 people (plus my father. Although, he had beriberi when in a Japanese Prison Camp during WWII...which could have set off most of his issues. He did have Ankylosing Spondylitis).

Have all your B vitamins checked regardless...as well as Vitamin D.

q
Posted 9/2/2015 8:36 PM (GMT 0)
I feel like i've seen it mentioned here. Di dyou try search? I also think Sherry aka Red34 might have mentioned something about this in the past but perhaps unrelated to TNF.
Posted 9/2/2015 11:19 PM (GMT 0)
I probably had it but my GI referred to it as "Serum Sickness" and it happened to me with all 3 anti-tnf drugs that I used, Remicade, Humira, and Simponi. It was the worst after the infusions and injections for a few weeks and it would gradually go away.

I had loss of motor functions like weakness, dropping things and tripping. Burning down my arms, spin and also had difficulty with cold and hot water.

It all went away after I stopped the meds and had surgery. But it took a few months.

I was on Remicade for almost 5 years before this happened. I did not take 6mp or imuran with it so maybe that's why I developed it(only speculating).
Posted 9/3/2015 5:20 PM (GMT 0)
Yes, I got it after 6 months on Remicade. Treated it briefly with medication (initially Pred, then gabapentin). Then decided no drugs. Did PT instead. Now I use my judgment - rest or exercises, depending on how I feel.

It's interesting that it can be painful sometimes and not others (worse in cold weather), and it can move around, but it's mostly peripheral. Yours too?
Posted 9/4/2015 5:46 PM (GMT 0)
Content, the neuropathy I have is called allodynia which means a normal stimulus feels painful. Mine is burning and intense pressure in my heels. The way I described it to my pain doc, the only doc to validate my symptoms, was that I felt like I had no padding on my feet, like walking on bones. It's a lot better but sometimes one foot will burn and the other won't or they will both have pressure as soon as I wake up or it won't feel that way for hours. So yeah, there is a lot of variation. I'm an advanced practice nurse and sometimes work 12 hour shifts. Those are the days I'm ready to book myself on the OR schedule, have them amputated and wear peg feet.
Posted 9/5/2015 5:52 AM (GMT 0)
My instinct is telling me that Remicade is making it worse, & those 4 meds aren't enough to counter that kind of neouropathy pain. You are on your feet for such a long work day. You must be so uncomfortable... So sorry you are suffering.

That said, increasing the gabapentin dosage may help - if you can still function. At one point, I was told it's acceptable to go quite high in the dose and take it at night - around 8 pm - and you'd sleep through the most groggy part yet still have the great benefit of pain relief through the next day.

The only other thing I can think of is to add a short burst of Pred to see if there's an inflammatory component with the neuropathy. My neurologist suggested it when it was the worst for me.

More cases are coming forward as they see the adverse effects of the anti-TNFs. You aren't alone in this struggle.... if that's any comfort.
Posted 9/5/2015 11:38 PM (GMT 0)
I'm not ready to give up remicade but I don't know if that's being foolish. When I initially researched the anti-TNF neuropathy, I found that most symptoms went away about 6 months after stopping the drug. Since I had never had issues with remicade and it was only after the initial loading dose of humira that my feet became unbearable, I felt completely comfortable resuming my old infusion friend. Clearly, my body relished mouse protein over human. September 29th will mark 12 months since my last humira injection.

I take all of my meds in the evening for the very reason you mention. I'm not sure why my pain doc hasn't increased the neurontin since I know the max is much higher than the 1500 mg I'm on. I'll have to ask her. Earlier in the year from Jan-March, I was on prednisone for a flare and it made no noticeable difference with the neuropathy. I was at 40 mg to start. What dose did your neurologist prescribe?

I am uncomfortable but at least I can work. When this peaked, I remember the very day, the date, the details, trying to hold back tears at work, calling my pcp explaining that something was wrong and that I could barely walk on my feet. I ended up taking a medical leave that turned into 6 months because of my UC. I probably spent easily $1000 on shoes for work because I thought maybe I had plantar fasciitis or something along those lines. I now live in Birkenstocks.

Thanks for responding. It helps to know I'm not alone.
Posted 9/6/2015 5:42 PM (GMT 0)
Remicade saved me big time, so I certainly understand not wanting to give it up! I felt that I had to stop. The two-foot stack of articles i read on possible adverse effects and their resolution reported that most adverse effects resolved within a year. That said, some effects didn't resolve (by time of publication), and cases continue to be tracked, including as more UC'ers are trying humira. (Others here have reported pains of various sorts that resolved within months of stopping remicade, as you noted, under six months, if you look at past threads.)

As for gabapentin, I think the daily dose for neuropathy pain may go as high as 3600/day. (i have one friend on that amount, divided into 3 doses, but not able to work, as you can imagine....). I couldn't find any studies that definitively showed a comparable marginal gain over 1800/day. You are taking four drugs that together may be the best relief you'll get for your neuropathy. Perhaps you could do a little bump up to 1800. Seems to me that's worth a try, especially since you can tolerate close to that already.

I was skeptical about prednisone helping my neuropathy. I think they don't know when/if there's an inflammatory component. I had to take prednisone anyway to address the lupus symptoms. (I was at 40 mg for a while and then tapered very gradually.) Can't say for sure whether it helped at all. If you look at our long thread (Severe joint pain, stopped remicade...), you'll see that Thoreau took 40 mg pred for a while, and it helped him briefly (but his symptoms were pains not diagnosed neuropathy). I wouldn't advocate taking pred unless it's really warranted, given the cumulative negative impact on our bodies.

You are trooper. Hang in there!
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