Neuropathy -- Needing some guidance: Has anyone had... - NRAS

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Neuropathy -- Needing some guidance

kellymomcars profile image

Has anyone had much experience with Peripheral Neuropathy?

I have tingling in feet and areas of numbness all the time. The bottom of my feet feel like they are on fire in the evening, and that's when the "pins and needles" act up.

My neurologist has ruled out large fiber neuropathy, and has recommended the biopsy for small fiber neuropathy. When I asked her what we would do with the information (positive or negative), the answer I got was that we would treat the symptoms (gabapentin)

If I was a betting person, I would bet that they will find nothing wrong with the small fiber biopsy, so again will conclude PsA related.

As background, I have been on biologics since December 2020 and have been diagnosed with psoriatic arthritis. I'm primarily affected on the right side, but have both knees, hips, wrists, hands, and neck issues. And the list keeps growing...

So my question is -- has anyone had experience with this? I'm hesitant to have another test done..

Y'all are the best. Thank you.

48 Replies

I have intermittent bouts of tingling, it started getting very bad in my arms and my physio managed to help hugely by working on my neck. Has anyone checked that this is not coming from pinching in your lower back?

I also have had some neck work done this year. The arthritis had impinged nerves on both sides. I had a cervical c7t1 esi done (basically and epidural for the neck) followed by physical therapy. This got rid of the numbness in my first 3 fingers on my right hand, and helped me get some movement back. Also had carpel tunnel release on right hand. No back checking done though... something I may need to ask again about... Thanks so much!

I recognise your description, I have this, Apart from physio, what helps you or do we just add it to symptoms and put up with it?

The neck injection was a tremendous help. It relieved a lot of the pain in my neck and quieted down the imprinted nerves in my neck that were causing the numbness in my first three fingers on both hands. My MRI showed severe foraminal stenosis at C5-C6. The doctor injected a steroid at the base of my neck - he described it as an epidural for the neck. I'm hoping it will last for a while because it actually took one pain away. He said it will not fix the problem permanently and I can go back for another one when I need it. So far so good.

Don't you hate spellchecker sometimes? "impinged". Not " imprinted"

I had a steroid injection into my elbow on Monday….much more painful tues, weds and thurs, but today I am magically pain free! And no tingling fingers either….

Isn't it great when you finally get something fixed?! I almost didn't believe that the numbness in my fingers was gone. That's good news!

Hiya KMC. I had peripheral neuropathy when taking leflunomide but it resolved when LEF was halted, shown by repeat testing. Not taken it for a good few years now & have been symptomless ever since.I hope the cause of your problems are easily resolved.

rounder profile image
rounder in reply to nomoreheels

Likewise Leflunomide gave me peripheral neuropathy which faded away when I changed meds.

nomoreheels profile image
nomoreheels in reply to rounder

We happen on some things don't we? What bugged me was when I told my Rheumy of my symptoms she said it was very rare on LEF. Not so according to the Neuro who did the NCS & EMG. I chose not to inform my Rheumy she was giving incorrect info, wouldn't have gone down too well. I'm glad yours was also resolved when you stopped it.

Interesting because I presently have intermittent tingling in my feet and hands and a nerve in my right leg and I am on leflunimide. My rhuemotologist said it was not my medication. I don’t believe her.

I’m sorry to hear that you're experiencing such symptoms. Those I had were constant, very different from anything I’d experienced before caused by inflammation, carpal tunnel for example, another symptom which returned on LEF, both sides this time though. Do ask to discuss it again at your next appointment, something is going on, whatever the cause turns out to be.

Thank you for your reply. Maybe it is not the leflunimide after all!

It could be a trapped nerve troubling you with the tingling being intermittent. Does moving about ease it?

No, moving it doesn't do anything.

Perhaps ask if you can be referred for tests.

You know, the Neurologist mentioned yesterday that medicine can cause neuropathy. I've tried Cimzia, Humira, and now Cosentyx. I sure hope that biologics aren't causing this problem...

Did you have to stop taking and then start taking after a period of time to prove it was the medicine?

Were you able to find an alternative that did not cause peripheral neuropathy?

Thanks for all your help!

Yes, I had the first test whilst still taking it & then temporarily stopped it, though I would have insisted it was stopped had the repeat tests not proved it was LEF causing the symptoms. No, I didn’t find an alternative, I’d exhausted all DMARDs. It was another try at double therapy. Only MTX works for me so the dose was increased, then I went back to my previous dose when I reacted (as I have done twice before) so my prednisolone was increased & tapered down again. I didn’t know whether I was zigging or zagging! 🤬

Follow the bouncing ball... Thanks for the insight.

👍

Garnacha profile image
Garnacha in reply to nomoreheels

You said to me that it could well be LEF causing my pins & needles in my feet & legs, the gp said at the time my b12 was low so increased my dose to 3mg a day, at my blood test yesterday asked what my last b12 result was, 1500, 900 is the norm apparently, I'm glad I've seen this post this morning as expecting a phonecall from gp & will mention it, may need another appointment with private rheumatologist, he said if increasing LEF from 10 to 20mg didn't work will have to try sulfazine, guessing if LEF is causing the pins & needles I'll need to swap to sulfazine xkellymomcars sorry for jumping on your post x

Garnacha profile image
Garnacha in reply to Garnacha

kellymomcars sorry forgot to mention I'm currently on 1500mg gabapentin & have been since December last year, it doesn't help at all with pins & needles unless they would be 10 times worse if I wasn't taking it 🤔 x

J1707 noted that pregablin has worked. I'm going to ask Dr. about...

nomoreheels profile image
nomoreheels in reply to Garnacha

Well, one possible cause seems have been ruled out as your B12 has responded. If you're still having symptoms then as with anything else you'd then continue to look elsewhere for a possible cause. Definitely mention it to your GP though he may want to defer to your Rheumy it being a specialist med. Even though my Rheumy said it was very rare she had to agree that I was otherwise reasonably ok & I'd only had one med introduced & symptoms started after I started LEF. If the increase in dose doesn't bring better control & the pins & needles increase, or extend to your hands for example, then I’d certainly ask for a referral to Neurology. You’ve not run out of options if it is due to the LEF.

Garnacha profile image
Garnacha in reply to nomoreheels

This is the result from b12, I had asked about pernicious anaemia being a possible cause for the pins & needles, I don't think the result below totally rules it or b12 out completely x

Test results
Foggyme profile image
Foggyme in reply to Garnacha

Garnacha - just to let you know, your blood results contain your name, DOB and NHS number (personal identifiers - enough for identity theft). You may want to delete the image, redact the information, and re-post?

Ditto for GP and clinicians name x

nomoreheels profile image
nomoreheels in reply to Garnacha

Firstly, best to delete the pic & load again without your personal details. Just show from Observations, excluding Laboratory Report too.

Your GP may investigate pernicious anaemia next then, it is considered to be autoimmune & we know if you have one it's not unusual for another to join in. Do ask if it's not suggested, something is causing the pins & needles.

Garnacha profile image
Garnacha in reply to nomoreheels

Thank you & Foggyme , was in a bit of a rush as the gp was supposed to ring at 10am & I'm still waiting 🙄 x

nomoreheels profile image
nomoreheels in reply to Garnacha

It can be maddening when you don't receive the call on time. Could be that there was an an emergency, or patient overrun, we never know.

There's just your GP's contact details which need sorting now (tel no). Sorry!

Garnacha profile image
Garnacha in reply to nomoreheels

🙈🙈🙈🤣 x

nomoreheels profile image
nomoreheels in reply to Garnacha

👍😁✔️

I love so much that we learn from each other. Isn't it grand that you found out about something to talk to you doctor about! Jump on anytime

I also have always mentioned the tingling in my feet to everyone I've been to (Rheumatologist, Orthopedic Surgeon, Pain Specialist and Urologist), and finally made an appointment with the Neurologist hoping for some answers or at least a direction. She was the one that showed me that I am starting to lose some balance, and have some complete numbness on both feet. She has ruled out large fiber neuropathy, diabetic neuropathy and B6 toxicity. (My glucose is always between 105-125, but my A1C is 5.5). I also have disrupted sleep, but have not started falling down. I try to push myself to continue with my yoga practice, but have stopped doing a lot of the balance poses (too dangerous for me).

How does carpel tunnel affect your feet? Did they say? I was under the impression that the carpel tunnel squeezing the nerves between the carpel bones causes tingling/numbness in the hands -- not the feet. Any tingling in my hands has come from the cervical/neck stuff.

I mention the Urologist because I also have an overactive bladder. Those nerves are tied to the sacral level of the spine (the bottom of the spine) as I was understanding. I asked if an MRI of the lower back might be helpful to the Urologist -- didn't bite.

I'm getting to the point where I think this neuropathy might also be thrown into the "Arthritis Bucket" -- we don't know why it's happening, so probably just your arthritis.

Thanks for making me feel like I'm not crazy.

Yes burning tingling feet that are on fire especially at night. I had nerve tests which confirmed peripheral neuropathy. I wasn’t offered any other tests. I’m on pregablin and it really has made a difference. I have days when it flares but they are far less intense but mostly it’s under control.

kellymomcars profile image
kellymomcars in reply to J1707

Very helpful. Gabapentin is not doing anything for me. May ask her about pregablin. Thanks so much!

J1707 profile image
J1707 in reply to kellymomcars

Good luck 🤞

Not to mention how fast everything falls apart Each time something on me decides to take a dump, I feel like the doctor just sighs and thinks "what can she come up with next". I know I'm not over-reacting and never have been a complainer. I also have asked all of them "can there be a common thread" to all of this? The common thread just may be PsA and this is what I just have to live with. So much for early detection and treatment...

I had PN, it came on while I was taking Leflunomide and took a good few months to disappear after I stopped taking it. I also had severe mucosal lesions while taking it.

It hasn’t returned.

Hi I have polyneuropathy in my feet which is very painful at night. I was tested and the test came back negative but my rheumatologist explained that I had it in the small nerves and that did not show on the testing. Polyneuropathy due to RA. No treatment offered. Bed socks can help at night.

kellymomcars profile image
kellymomcars in reply to Shonkie

There is a small fiber neuropathy test. They take tissue samples from you legs. It looks like a little core sample of tissue taken under local anesthesia. They look at the small nerves in those samples to see if they are damaged. If positive, there's no cure -just monitor and treat symptoms. If negative - just treat symptoms. I'd push harder for treatment if you need relief.

Note I have Stills Disease which manifests as RA.Re over active bladder issues, I’ve had problems for years and finally was told it’s Interstitial Cystitis linked to RA.

Sadly no medication for it but lots of food and diet tips if you google.

I was rushed into hospital in August because I awoke with my left leg completely numb & I was unable to move it at all. A few hours later I couldn’t pass water properly so I was sent for an MRI scan which only showed up things as they usually are ie scoliosis, slipped discs etc. a scan of my bladder showed that I was retaining 70 percent of urine. I wore a catheter for 7weeks & am now getting used to being without it. I was in hospital for 5 weeks. I mentioned seeing a neurologist but wasn’t taken up on it. My feet are always tingling & cold & a bit numb now but didn’t used to be like that. I think I will mention seeing a neurologist again.

Absolutely see a Neurologist -- that sounds frightening what you went through

I was sent for nerve tests( can’t remember exactly what they were) when this was causing me problems. The radiographer said I was still within the normal range but recommended that I start taking Vitamin B complex. I’ve done that ever since and within a few months the symptoms vanished and have never returned. It’s worth a try. I don’t take them on mtx day just in case they have a similar effect to folic acid .

kellymomcars profile image
kellymomcars in reply to SueB

I did learn from my neurologist that too much B6 can cause tingling. Many multivitamins have way too much B6 and I had never had my level tested. Can back slightly high so have stopped multivitamin. Did up my B12 though.

Hi so sorry to hear you are suffering like this but all your symptoms very like mine. I have been through hoops to find what is wrong. I did have four intravenous bouts of Rituximab but it hasn’t really helped. I have had this condition for over five years and it has gotten worse. I don’t take any medication for this but I do have RA orRD and take methotrexate. I’m sorry I can’t help any more than that,but may I ask do your hand or hands shake now,mine are awful to the point where I have difficulty cutting up food etc and life is certainly a lot more trying. All my thoughts are with you.

My hands do not shake, but they are weak and drop things. I had am MRI on my right hand yesterday because of intense pain at the pisiform bone. I'm sure that my hands are also going to be thrown into the Arthritis Bucket too. My thoughts are also with you...

Many thanks to all that have participated in this conversation! I looked forward to checking every morning -- you all are the best.

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