Humira, Remicade Side Effects Linked To Increased Peripheral Neuropathy Risk: Study

• DAVIDSeptember 20, 2024 at 10:10 pm

  Diagnosed with Crohns in 1997, Humira initially for a short time. Changed over to Remicaid in 2015. Took it for 2 1/2 years courtesy of the VA. Developed peripheral neuropathy soon after and is progressing from right foot to left foot. Burning pain, pins and needles with sharp shooting pain out of the blue. Cold ice water soaks help tremendously. Only time I have no pain is while soaking or asleep[Show More]Diagnosed with Crohns in 1997, Humira initially for a short time. Changed over to Remicaid in 2015. Took it for 2 1/2 years courtesy of the VA. Developed peripheral neuropathy soon after and is progressing from right foot to left foot. Burning pain, pins and needles with sharp shooting pain out of the blue. Cold ice water soaks help tremendously. Only time I have no pain is while soaking or asleep. Pain re-emerges as soon as I wake up. Pain on level 7 of 10 sometimes and always at least 5-6. Would not wish this on anyone.

• TiffanyAugust 11, 2023 at 9:08 pm

  Started Humira 6mos ago. Noticed my left thumb was numb 4wks ago. Have seen 2 docs both stumped. Now thumb is a pulsing burn and my left index finger is hurting at joint. Right hand thumb also starting to nerve pulse. I have never had an RA symptoms in the 15yrs I've been treated for iritis. I am very concerned learning this and have made the choice to stop Humira to see if I can stop the a[Show More]Started Humira 6mos ago. Noticed my left thumb was numb 4wks ago. Have seen 2 docs both stumped. Now thumb is a pulsing burn and my left index finger is hurting at joint. Right hand thumb also starting to nerve pulse. I have never had an RA symptoms in the 15yrs I've been treated for iritis. I am very concerned learning this and have made the choice to stop Humira to see if I can stop the attack.

• RodAugust 2, 2023 at 6:09 pm

  I have been on humira since late 2000's, about 6 months after starting l began getting tingling in my feet. Now 10+ years latter l suffer extended peripheral neurophysiology in both legs. My neurologist suggested my smoking was the cause and never mentioned the possibility that humira might be the cause. L live in Australia so this information needs to be made public world wide.

• MaryJuly 24, 2023 at 8:53 pm

  I have had crohns for over 50 years, with 2 resections. A few years before the 2nd resection I was hospitalized with a blockage & convinced to do an IV infusion of Remicaid. I won't go into details, but that's the only dose I did. My hair started thinning, creating bald spots. Thankfully, they eventually filled back in, even though the hair remained a different texture. Fast forward to about 3 yea[Show More]I have had crohns for over 50 years, with 2 resections. A few years before the 2nd resection I was hospitalized with a blockage & convinced to do an IV infusion of Remicaid. I won't go into details, but that's the only dose I did. My hair started thinning, creating bald spots. Thankfully, they eventually filled back in, even though the hair remained a different texture. Fast forward to about 3 years ago. Started having crawlies in my feet, then increasing numbness. Last year a nerve study confirmed peripheral neuropathy, cause and treatment unknown. Remember those bald spots? They're back. Bloodwork doesn't show any irregularities. After seeing this article it all comes together. I'm now 67. Balding and tripping due to numb feet are not always due to aging!

• GiselaJune 4, 2023 at 3:34 pm

  I have been on Humira for two years since then I have nerve damage in my toes on my right foot first now it’s leaning to my left. I spoke to my RA doctor and didn’t get any answers. I decided on my own to get off Humira my pharmacist from Tricare did some research on it and he did say it is a side effect from Humira. I was diagnosed with RA three years ago, when I took methotrexate I had no proble[Show More]I have been on Humira for two years since then I have nerve damage in my toes on my right foot first now it’s leaning to my left. I spoke to my RA doctor and didn’t get any answers. I decided on my own to get off Humira my pharmacist from Tricare did some research on it and he did say it is a side effect from Humira. I was diagnosed with RA three years ago, when I took methotrexate I had no problems. I think I might just go back on methotrexate. It’s nice to know what other patients have, thank you for sharing your comment.

• KristiJanuary 13, 2023 at 7:20 pm

  I was on remicade for only a year and have peripheral neuropathy in my hands and feet. I have intense tingling, burning, and numbness in both.

• MaureenNovember 5, 2022 at 6:28 am

  I have been getting terrible pins and needles mainly in my feet and thighs since I restarted my Humira . I have been on Humira for 20 years for my Rheumatoid arthritis but had a 1 year break from 2021 until I restarted 2022 and have been having pins and needles since. I had no idea of this link. I'm shocked as no one has ever mentioned side effects .

• bruceAugust 6, 2022 at 2:09 am

  This is the first I've read about peripheral neuropathy!? I have been on remicade for almost 20 years now and it has been great for Crohns. BUT I've had peripheral neuropathy building in my hands for about 5 years. I thought it was from vibrating power tools. My GE never mentioned this side effect and I may not have mentioned it to him. My GP can only think of carpal tunnel as a possibility. [Show More]This is the first I've read about peripheral neuropathy!? I have been on remicade for almost 20 years now and it has been great for Crohns. BUT I've had peripheral neuropathy building in my hands for about 5 years. I thought it was from vibrating power tools. My GE never mentioned this side effect and I may not have mentioned it to him. My GP can only think of carpal tunnel as a possibility. Proven otherwise. It's Friday and I just had an infussion this after noon and will try to talk to my GE on Monday. Going off remicade and having a Crhons come back after 20 years isn't a very good option.

• TomJune 29, 2022 at 9:32 pm

  I have been on humira for more than 2 years now I have peripheral neuropathy in both legs doctors don't understand how I'm still able to walk but everyday it continues to get worse everyday I become more and more unstable on My feet I have become highly prone to falling and I'm only 48 years old. Knowing this is one of the conditions that I have 'the neuropathy' my rheumatologist has never suggest[Show More]I have been on humira for more than 2 years now I have peripheral neuropathy in both legs doctors don't understand how I'm still able to walk but everyday it continues to get worse everyday I become more and more unstable on My feet I have become highly prone to falling and I'm only 48 years old. Knowing this is one of the conditions that I have 'the neuropathy' my rheumatologist has never suggested the link to humira as if arthritis or RA hasn't been debilitating enough for me I now learned it the drug I've been taking to combat RA has potentially made my life worse.

• ClydeJune 18, 2022 at 8:20 am

  I was on Remicade for ten years for severe Crohn’s disease. The biggest problem was I never had the proper dose. The amount of Remicade is given by the weight of the patient. My dose never changed from 500 mg even though my weight fluctuations were from 165 to 230lbs. I went to the GI department MGH (Massachusetts general hospital) and they couldn’t find a single blood test in my past that showed[Show More]I was on Remicade for ten years for severe Crohn’s disease. The biggest problem was I never had the proper dose. The amount of Remicade is given by the weight of the patient. My dose never changed from 500 mg even though my weight fluctuations were from 165 to 230lbs. I went to the GI department MGH (Massachusetts general hospital) and they couldn’t find a single blood test in my past that showed even 1/5th the amount of Remicade in my blood to have any Benefit. They increased the dose by 60% (180lbs) for 3 infusion’s but it had no effect. They have since put me on Stelara evey 8 weeks. And the results have been really good. When back in California I asked my GI doctor why they never dosed me properly ( in 10 years they never weighed me or even asked me. ) his response was:: I THOUGHT YOU WERE CONCERNED ABOUT THE SIDE EFFECTS:: what the f##k ? Anyway I have severe small fiber neuropathy and it has completely disabled me the last 10 years. So much more to this story so I’ll leave with this. Always question your Doctors and hang in there for your family and friends.

• katherineJanuary 16, 2022 at 1:03 pm

  Have been on Remicade for nine years. Had a bad attack of pins and needles very early on in the treatment. Had tests at the hospital but was told the stinging, burning and tingling in my left thigh might go away on its own. No mention that Remicade was possibly to blame. No medication offered. The problem did resolve itself pretty quickly. Nine years later, the attacks started again in the same[Show More]Have been on Remicade for nine years. Had a bad attack of pins and needles very early on in the treatment. Had tests at the hospital but was told the stinging, burning and tingling in my left thigh might go away on its own. No mention that Remicade was possibly to blame. No medication offered. The problem did resolve itself pretty quickly. Nine years later, the attacks started again in the same place. Much worse now. Have hardly been able to walk unless I keep sitting down which seems to help for a time. Has been nearly 2 months since it started and have just written a letter to my GP. Should have been told the risks before I started it. Very angry and worried as I am nearly eighty and live alone. Katherine

• HeatherJanuary 10, 2022 at 9:34 am

  My husband was prescribed amgevita a bio similar to humira and has lost use of his left hand. no dexterity and a dropped wrist within months. He is left handed and no real change four months on. Currently having tests but as of yet no answers. Suspect demyelination side effect from Amgevita.

• AnnaDecember 18, 2021 at 5:08 pm

  I was prescribed Humira for psoriatic arthritis. After 5 months of being on it, loss use of my L hand, weakness, tingling, numbness. I also have peripheral neuropathy symptoms in both feet and down my L leg, and sometimes pulsing down both arms and pin & needles feeling i to hands. I can't physically do what I use to be able to because of this. I've asked all my doctors if this could be a s[Show More]I was prescribed Humira for psoriatic arthritis. After 5 months of being on it, loss use of my L hand, weakness, tingling, numbness. I also have peripheral neuropathy symptoms in both feet and down my L leg, and sometimes pulsing down both arms and pin & needles feeling i to hands. I can't physically do what I use to be able to because of this. I've asked all my doctors if this could be a side effect, but no answers. After lots of diagnostics, still no answers.

• BrianDecember 12, 2021 at 12:48 pm

  Last year my doctor said I had rheumatoid arthritis he gave me a shot of Humira without telling me the side effects or any other damages you can do to me he said would make me feel better after 2 and a half months I started getting numbness on the right side of my body from my shoulder to my toes and now I got very bad nerve problems with my back I think it's from Humira is there anything I can do[Show More]Last year my doctor said I had rheumatoid arthritis he gave me a shot of Humira without telling me the side effects or any other damages you can do to me he said would make me feel better after 2 and a half months I started getting numbness on the right side of my body from my shoulder to my toes and now I got very bad nerve problems with my back I think it's from Humira is there anything I can do medically or legally can somebody please get back to me

• WilliamOctober 27, 2021 at 3:22 pm

  Was on remicade for1 year To treat colitis Started getting cramps in my left calf, tingling arms during sleep, progressed to not being able to get up from a sitting position without help and not being able to stand up from a kneeling position. I stopped the treatment and was referred to the neurologist who did an EMG And confirmed a rare side effect, demiliating nerve damage, conducting block[Show More]Was on remicade for1 year To treat colitis Started getting cramps in my left calf, tingling arms during sleep, progressed to not being able to get up from a sitting position without help and not being able to stand up from a kneeling position. I stopped the treatment and was referred to the neurologist who did an EMG And confirmed a rare side effect, demiliating nerve damage, conducting blockage, I have a floppy left foot and weak right arm, hand, still getting calf cramps during sleep, I can not run normally anymore, have trouble with my balance.... nasty stuff they were made aware of these issues, in case studies decades ago, but they don’t tell you about it. Do your due diligence before contemplating the use of these TFN blockers At $5000 a dose they want as many as they can get on it.

• KathleenOctober 27, 2021 at 1:05 pm

  I was on Humira for Crohn's Disease for about 6m/1yr then I started getting sharp shooting pains and numbness in my feet and hands. After being reviewed by a Neurology Team in the ER I was diagnosed as having an adverse reaction to TNF (Humira) and taken off Humira. A f/u nerve biopsy confirmed small nerve neuropathy due to the adverse reaction of Humira. Now I have terrible neuropathy with no [Show More]I was on Humira for Crohn's Disease for about 6m/1yr then I started getting sharp shooting pains and numbness in my feet and hands. After being reviewed by a Neurology Team in the ER I was diagnosed as having an adverse reaction to TNF (Humira) and taken off Humira. A f/u nerve biopsy confirmed small nerve neuropathy due to the adverse reaction of Humira. Now I have terrible neuropathy with no medication that gives me relief. The pain is unbearable.

• MaureenSeptember 5, 2021 at 1:48 pm

  started Humira self injection last December . After only two doses experienced severe pain in thighs shooting down to knees. Went to A and E after several nights in severe pain, and was advised to not take any more Humira. Commenced on Pregabalin and having to take increasing doses to control pain. Then experienced panic attack and depressive feelings so now on weaning dose. Pain Is still b[Show More]started Humira self injection last December . After only two doses experienced severe pain in thighs shooting down to knees. Went to A and E after several nights in severe pain, and was advised to not take any more Humira. Commenced on Pregabalin and having to take increasing doses to control pain. Then experienced panic attack and depressive feelings so now on weaning dose. Pain Is still bad in left leg. Can't sleep for pain.

• LatoyaSeptember 4, 2021 at 4:20 am

  I was remicade in the early 2000’s to treat Crohn’s disease. It caused peripheral neuropathy in my legs in feet. I still have swelling in my left leg and ankle I also have numbs in my feet sometimes.

• DavidFebruary 10, 2021 at 10:20 pm

  Was treated with Remicade for 2-3 years via infusion at VA for Crohn's. Now suffer from pain, numbing, burning effects in bi-lateral feet. Tried all treatments available including light treatment, chiropractic care, acupuncture, gabapentin, Lyrica and cortisone shots. No help. possible Small Fiber Neuropathy according to Neurologist.

• ShellFebruary 2, 2020 at 12:09 pm

  My daughter was 13 when put on Remicade for Crohns disease. At 14 she started getting pains and went from dancing to a wheelchair. Docs could not figure out what was wrong and causing her so much pain and other symptoms even after tons of testing. At 15 she had a skin biopsy that showed severe widespread Polyneuropathy. GI, rhemo, and other docs swore it could not have came from Remicade. Now at a[Show More]My daughter was 13 when put on Remicade for Crohns disease. At 14 she started getting pains and went from dancing to a wheelchair. Docs could not figure out what was wrong and causing her so much pain and other symptoms even after tons of testing. At 15 she had a skin biopsy that showed severe widespread Polyneuropathy. GI, rhemo, and other docs swore it could not have came from Remicade. Now at age 17 we recently found out there is a connection. The inflammatory bowel disease clinic doc in Miami even told me several of her patients got it from Remicade and some got better when taking off. My daughter's childhood has been robbed because of Remicade!

• MarvinJanuary 20, 2020 at 9:11 pm

  I have been on Humira for several years and of course part of R.A. is Nueropathy so the fact that it advances is construed as simply inadequate control. My Rheumatologist is currently trying to move me from Humira to Cimzia or Remicade. There has been no discussion that it may be a side-effect. How am I to decide how to best preserve my remaining ability?