This is my first time to post. 44 yr. old Texan with PsA for last three years. I was on Humira for about 6 months. It was helping my arthritis but by the fourth month, I started to get burning sensations in my hands and feet. It was more noticeable as I was going to sleep. My feet became very tender and it became hard to walk. My rheumy told me to go see a neurologist. The neurologist could not explain it. At month six, I decided to switch to Cosentyx. After being off of Humira for about two months, I could tell the burning had stopped. Now I have been on Cosentyx for a little over four months and I feel like I am starting to flare again. My whole back is killing me and my joints are starting to flare as well.
I am trying to work out what to do next and I guess I have another month to decide because I just took my Cosintex shot 6 days ago and it’s half life is like 45 days. The way I see it, I have two other options, I am thinking about going back to a TNF inhibitor since I know it has worked in the past and if I still have the same burning sensation, at least I will have my arthritis back in remission and I can then try something else. Or I could gamble on a new med and hope it works. I have been barely getting by at work but it’s a good job and it has great insurance.
Question, has anyone had this burning sensation in their hands and feet while on Humira? It felt like neuropathy. It is gone now that I am off of it. Would I have any better luck on a different TNF inhibitor like Enbrel?
Any insight would be much appreciated.
I used to have the burning sensation in my feet very regularly - for years. Actually not since quitting Humira for Imraldi … but I think it’s possible it had become less frequent while on Humira.
It would be worse when I went to bed. However it also helped me to get hooked on Tai Chi … I found that it would worsen during the first 20 minutes of the set, so much so that I felt a bit sort of tearful at times. Then, miraculously, without fail, the burning sensation would cease and stay gone for 24 hours. Done properly, Tai Chi massages the feet, I think it’s the constant flowing transfer of weight from one part of the foot to another. Highly recommended!
To be honest, I think there are worse things than this burning feeling, I certainly feel that it’s worth enduring if the disease is well-controlled overall. Though maybe yours is worse than I’ve experienced. And I do have erosions in my feet now. Despite the possible connection with Humira, it has always seemed to me to be a symptom of inflammation … i.e. inflamed = hot. Yet I have had it when my disease was otherwise very well-controlled.
I had a generalised neuropathy with Humira, which came on slowly after I’d been on Humira successfully for over 3 years. It was different to what you describe, but in my experience, I tried another, similar TNF blocker, Cimzia after I stopped the Humira, and it has worked well for the last year or so, with no side effects.
I too had the burning sensation of hands and feet when initially put on Humira. It seemed to flare up 2-3 days post injection and last for 3 to 5 days. I tried OTC pain meds like NSAIDs and Tylenol, but there was little to no relief.
One of my patients introduced me to an herbal specialist and I tried Kratom (Mitragyna speciosa). It’s a very bitter tasting ground powder of an Indonesian plant in the coffee family. We played around with dosing and found that 4-6g of kratom along with 1000mg of Turmeric completely took the sensation away. The onset is around 20 to 30 min. and the relief for me is more than 10hrs.
I highly recommend trying after you do some research. Would not be surprised to hear that it helped. Good luck, hope this helps. DG
The burning I had in my feet was unbearable. I described it as walking on a bed of burning coals and nails. Icing helped and eventually my doctor prescribed Nortriptyline, which finally “cured” it. That was all about 6 years ago—before I started Enbrel. Now I get occasional burning, but nothing near what it used to be. My feet are not good, and I think the terrible burning years ago was inflammation that caused damage to the many joints in my arches (even though the burning was in my soles)…my arches started hurting about a half year after I started Enbrel, which was about a year after the Nortriptyline cured the burning. I don’t enjoy a lot of walking, but it’s not just my feet. My lumbar area of my back is so damaged (from PsA of course ) my legs get weak when I walk…now I have something wrong with my left hip or SI joint…I’m thinking about asking for an x-ray or MRI to find out WTH that is!!! So sick and tired of this disease!
@rsahadi, I’ve not had a burning sensation in my hands. Mine was more of a tingling, tightness, throbbing fingers, etc.—Enbrel helped that, too.
Here is an update.
Cosentyx completely failed. I went into full flare mode. My doctor switched me to Cimzia. First two weeks were great. I could walk around some. However, in week three, the burning in my feet and hands came back along with some numbness and tingling. Also experienced burning and tingling up through legs, buttocks, and lower back. I am now in the 5th week and things are getting a little worse. I can tell that this is affecting my peripheral and central nervous system in a bad way and this is not something that I will be able to tolerate. My feet are in such pain from this that I can barely walk. I called the nurse support line and they warned me that this is a rare but serious side-effect that will not just get better with time. At this point, I am afraid to try another TNF-blocker because this is so similar to what I experienced with Humira. My doctor wanted to know what I wanted to try next. He suggested Xeljanz or Orencia. I do not know much about either one. I asked him about Stelera and he said that it mainly helps with the tendon part of arthritis and skin part but not the joint part. I would love to hear some thoughts on all of this.
Burning, numbness, tingling points as you say points to your peripheral and central nervous system, not to what I experience as more classic PsA issues. I can get an internal sort of ‘chinese burn’ thing in whichever affected joints and I can get hot feet but not walking on coals hot feet as I have no real joint damage on my feet and I certainly have no neurological damage in my feet as a consequence. And I certainly too don’t get burning and tingling up and down nerve pathways in my legs.
You have had nerve conduction tests done haven’t you? You have been referred to a neurologist? Your spine has been MRI-ed to check for disc damage etc? You have considered a diagnosis of possible fibromylagia too? Just my thoughts and possibly all of these things have been done and dismissed.
I know very little about Orencia other than you can’t take it with anti-TFNa inhibitors like Humira or Enbrel. It seems to try and block the T-cells over reacting. Whereas anti-TFNa’s work further down the chain of the inflammatory process. Xeljanz is one of the newer meds beyond the newness of IL inhibitors like Cosentynx or Stelera, it’s JAK Kinase inhibitor.
In my brain I sort of crudely identify and classify our choice of meds like this.
DMARDs are likely throwing a huge log into a little hole and hoping it helps. It so often does they keep using them. And they help to make biologics work better.
Anti-TFNa meds are like throwing a spear into the the little hole, which works a little better. - they’re humira, enbrel, cimzia and simponi. Lots of people find their spear fits really well.
IL inhibitors are using different sized needles to sew up that hole but there’s several that might fit or not fit. For instance Cosentyx inhibits IL17 but your IL17 might be just fine. However other IL inhibitors inhibit different numbered interleukins, so possibly there’s another to try. Stelera is also an IL inhibitor. I’m about to start Cosentyx and my rheumy said if I don’t get on with it she’ll swap me to Talz another IL inhibitor instead.
JAK Kinase inhibitor - I haven’t quite got the understanding to descibe yet!
I’ve no idea if any of this helps you, but to me at any rate your symptoms and issues are like you say pointing to your central nervous system and if I was in your shoes, I’d be wanting a long discussion with a neurologist, before trying yet another PsA med.
@rsahadi from what I understand, peripheral neuropathy isn’t all that uncommon. I have it. And for me it’s been better and it’s been worse depending on the DMARD or biologic I’m taking. I have a Rx for a neuropahty medication (gabapentin) which helps me when it’s a worse not better time. I take it at night as it causes a little drowsiness and because, like you, the neuropathy for me starts when I take pressure off my legs while seated or lying down. It’s like the most painful restless legs/feet feeling and walking while it’s going on is like stepping on shards of glass. I don’t know that I get the same burning sensation that you describe, for me it’s more like an annoying and ongoing feet fell asleep pins and needles type sensation.
Anyway I think there are plausible medication solutions (other than switching biologics) that can be used to help you. Let us now how you’re doing.
Thanks for the reply. I have been on gabapentin, 300mg three times a day for about a year now for this pain. IT also helps with pain in general for me. I was taking it four times a day for about a month and got super depressed. It was a struggle to get back down to 3 times per day. What I am currently experiencing is very similar to your pain but not at while taking pressure off of legs. It is while putting pressure on them when I feel it the most. It seems to be brought on by the Humira or Cimzia. Both meds produce very similar effects but not quite the same areas. It wasn’t like this when I was off TNF inhibitors and I was on Cosentyx. Cosentyx did nothing for my arthritis pain. I did have a EMG test by a neurologist several months ago when I was on Humira to rule out neuropathy and he said that I had no large nerve damage. He could not determine if there was any small nerve damage.
Just came across your post, I have had burn pain in my hands and feet for over 30 years. I have tried every medication and treatment. It alternates from burning in the summer to freezing in the winter.
I was diagnosed with small fiber neuropathy, they do a punch biopsy on the lower leg to count the small fiber nerves.
Are you still on Gabapentin? Or have they graduated you to Lyrica? Both I found were not tolerated, I would have bad blurred vision and brain fog.