pain and numbness in finger tips

[Sanga]

hi

I wrote a couple of weeks ago re starting interferon. Thank you everyone for your helpful words.

Will be starting end of October.

I have another question.

Over the last year I’ve been getting an intense pain and heat in my thumb , index and middle fingers preceded by numbness and/or tingling.

It lasts for 3/4 days and is as if I’ve hit them with a hammer

Does anyone else with PV and rising wbc and haemoglobin experience this. My rbc is 0.43

Is it a symptom of my bloods changing ?

Sanga

[Hidden]

Hi Sanga l also have PV and struggling with intense pain in my hands and peripheral neuropathy in my thumb. These symptoms appeared after the sesonal flu jab 2 weeks ago now. My blood count appears normal although unpleasant side effects of Hydroxy (intence burning in body,insomnia and gruelling bone and muscle pain ) led my consultant to suggest a change to Interferon. Im reading up on this med and think it might be worth a try.

Adiewon

[Orangeboykitty in reply to Hidden]

I forgot to say my fingertips also hurt. I complained about it to my hematologist, but his only idea was to increase my aspirin, figuring that it had to be my circulation. Why the whole thing went away gradually when I started Besremi I don't know, but I'm thankful!

[Hidden in reply to Orangeboykitty]

Morning Orangeboy you have given me hope this morning,thanks.

Adiewon

[Orangeboykitty in reply to Hidden]

You're very welcome, Adiewon2.

[Orangeboykitty]

I had intense numbness (no burning though) in most of my fingertips. They also turned all sorts of colors....white, blue, purple, red. The more I used my fingers the more intense the numbness. Since switching to Besremi that has gone away. I was on Pegasys for 2.5 years previously. I switched because of the many side effects of Peg. Although the two meds are similar, Besremi gives fewer side effects and it's only every two weeks. I feel like I'm on vacation!

[Hidden in reply to Orangeboykitty]

Hi Orangeboy,yeh my hands also appear bruised,on the pads of my fingers .I will read about Besremi its good to have more choices,you sound relieved so glad its working out for you.

Adiewon

[hunter5582]

This kind of symptom can be one of two things typically. Erythromelalgia (microvascular) and paresthesia (neurological). The burning pain is typical with erythromelalgia. Note that people with MPNs can experience the burning pain without it presenting with full-blown redness typically seen with erythromelalgia.

I experienced the same thing, but in my feet. it happened when I was off aspirin for a while. Going back on aspirin solved the problem for me. Some people do find they need a higher dose of aspirin, taking low-dose aspirin 2x/day.

Pain is a warning that something is wrong. There are other things it could be, including peripheral neuropathy as Adiewon2 experienced. This is an important issue to review with a MPN Specialist. You may also need to consult with a neurologist.

Hope you find relief soon.

[Sanga in reply to hunter5582]

thanks for all your comments. I’m seeing my consultant on 20th to start peg so will speak to her about the pain in my fingers as well.

Sanga

[Hidden in reply to hunter5582]

Thank you Hunter you have given me a gentle push, lm booked for face to face in another 4 weeks time. But my thumb hurts alot and this problem of 🔥 burning in arms,legs,hands and upper stomach and mid back is a real pain ugggggg. Gp gave me promethazine hydrochloride on the 27th for sleep and maybe to help with inflammation. I will see her again on Thursday,these tabs intialey reduced burning and gave me a peacful nights sleep. However lm doubling the dose as suggested from 10mg to 20mg till l see her in 4 days time. My instinct is to call hematologhy to try to bring my appoinment to discuss a move from Hydroxy to Peg Interferon. Im stuck again 😪 and need another little shove.

🙏

[hunter5582]

I hope you find the promethazine helps. 10mg sounds like a rather low dose but it is a med worth being careful with. Here is a bit of information on dosing and other factors to be aware of. online.epocrates.com/drugs/...

While possible unrelated, I would be highly suspicious that the symptoms you are experiencing are directly MPN-related. Consultation with a MPN Specialist may help in dealing with the root cause rather than the symptoms. I would suggest doing that as soon as possible. While hydroxyurea does work for some for symptom control, Pegasys works better for others. It is certainly worth exploring sooner rather than later.

All the best.