Hi all the saga continues another heam at my local hospital!Well here goes they had me on 45 mg of interferon 3 times a week everything fine until 3 weeks ago now we have burning with cold hands and feet.Started mainly evenings and late afternoon now after latest dose all day.,with pins and needles thrown in for good measure.
I wasn't sure if this was related to the other nerve issue in my spine but was told that would not be effecting my hands.So we are stopping the inteferon for 3 months and being referred to a neurologist.
The good news is all bloods are within normal range including the ones in the iron section which are now behaving.And I see Guys in June so all of this may change.
My question is any tips on living with the cold sensation , and are the neuropathic socks I've seen sold any good?
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Spanelmad
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Great to hear your blood levels are good 🙂 but sorry you're experiencing the cold hands & feet. I've not experienced anything like this. I hope your team at Guys can get to the bottom of it for you.
The local heam has said we're not ruling interfon out yet!! It's worked everything normal in the blood way but as it's been said on here before if You have an autoimmune problem be aware.I think the Guys appointment is going to be a long one.
I'm never sure if I'm experiencing side effects from the peginterferon or PV, as both read similar. 5 months in, now on 135 weekly. Bloods next week so hoping my platelets are continuing to drop. Haematologist was hoping they'd drop quicker, but I'm on the peg marathon, I think 🤔 at least they're going in the right direction.Great you've a Guys appointment to talk it all through. Please let me know how it goes.
I didn't see anywhere that you mentioned having cold sensations, just burning and paresthesias [the medical term for the pins & needles or "fell asleep" sensations].
When I 'Googled' "neuropathic socks", I was re-directed to 'did you mean neuropathy socks', which mainly listed compression hose- which to be honest could possibly help...
The caveat is though that whether any given remedy will help or not actually depends on what the root cause of the problem is.
E.g., I have venous insufficiency in my legs which at times causes paresthesias that are relieved [or better- prevented] by my wearing compression stockings regularly, but if I have them off and don't elevate my legs pretty well, the symptoms do eventually return.
Conversely, the paresthesia symptoms in my hands, which are from nerve impingements in my neck and/or carpal tunnel can often be worsened by using compression wraps on my hands/wrists, unless I take a lot of care to keep them relatively loose. Their main therapeutic value is in reminding me to avoid some uses and positionings of my hands.
Regardless, the temperature of my hands fluctuates wildly between being ice cold and quite warm, sometimes regardless of activity and/or environment, except that if it's cold out, they are almost always too cold. One may even be hot, while the other is ice-cold.
My M-I-L had both paresthesias and the persistent cold sensations from nerve damage [carpal tunnel and cervical arthritis-related] in her hands for years prior to her demise last year, and nothing.- not even heated gloves helped her very much.
She did get some temporary relief from a portal hand massage machine we bought her that provided heat, compression, and vibration all at once, but even that could worsen her discomfort if she used it for too long or too often.
If you are interested in more information about that, I'd be happy to forward it.
Thanks for your reply, all in all its an extremely weird experience burning cold pins and needles.It's only appeared in the last three weeks and is now constant.I'm using a heat pad,the dogs spiky plastic ball(rolling it up and down the sole) and elevating the feet.The other sciatic pain is also having a moment.So the dogs not getting such a long walk.
Hi, I too have chronic sacral nerve pain. My feet do tingle and burn and I thought there might be change injecting Peg every two weeks. As you’ve mentioned sciatic I’m thinking it might nerve related. It’s quite difficult to distinguish between the nerve pain and whether it’s Peg induced isn’t it.
I've had nerve blocks to try and control the L4/5 S1 issue and that seemed to stop it from traveling down the leg to lodging in my bum!! The Heam thinks it's probably the interferon buts not sure.I'm glad of the Neurologist reveral to try and get to the bottom of it.The existing nerve issue took years to diagnose so we're moving in the right direction
I have burning feet really bad and my fingers get tingly . Its interesting because my numbers are fine but my feet and fingers are not. I have PV and on Hydrea. My Hematologist can't answer for my feet or hands he really doesn't know. I don't know if its from the medicine or the PV
I've got ET which is maybe marsked PV due to RA. The Heam was very aware of the issue as it's effecting my balance.My numbers are great but the side effects are too bad in his eyes to ignore.Do you see a MPN specialist? It may be worth asking about changing meds.
the difference between peripheral neuropathy and nerve entrapment is largely the distribution of the symptoms on feet and hands Nerve entrapment has fairly clear distribution based on the spinal nerve distribution and peripheral neuropathy can start in tips of toes and fingers, then often progresses uniformly to include whole foot and then sock- like distribution, then upto knee and in worse cases, whole leg or arm bilaterally. I have treated this condition many times in my clinical practice
On this Then it sounds like peripheral neuropathy.Started in toes and has worked it's way down the foot, My hands it's just the finger tips.How do you treat it?
I've been looking up sciatic foot pain and that doesn't sound right since the nerve blocks it no longer travels down the leg stays trapped in my bum which does go numb on occasion
I have been practicing acupuncture for the last 35 years. I worked in a specialist oncology clinic during this time. It was effective in treating cancer treatment related peripheral neuropathy ( I believe there is some research in this usage) I have also treated it often in my own clinical years as there is nothing really available other than this. It was successfully treated at the oncology clinic and in my usual clinic where the etiology was mixed , there was mixed results.
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