Dupuytren's contracture & Hydroxycarbamide - MPN Voice

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Dupuytren's contracture & Hydroxycarbamide

dabs121 profile image
21 Replies

Hi all,

I have had Dupuytren's contracture developing very slowly over the last 8 to 10 years, but since starting on HU a year ago it seems to have progressed much more, especially in the last 6 months and I'm wondering if there is a link here. It's not serious, I have a finger on each hand that is stuck each morning when I wake up and eases off during the day but the finger on my left hand aches most of the time which is becoming irritating and from what I have read will only get worse.

My question is, has anyone found any link in its progression with either having an mpn, in my case ET, or from using HU?

Many thanks for any replies in advance.

David

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21 Replies
Mirror368 profile image
Mirror368

I am also on HU and no problem with this. However, I feel my fingers are arthritic so I do flexing exercises every day to keep them flexible. I flex my fingers open and closed…also, the thumb separately forward and slightly sideways up and down. Ask your doctor if okay to exercise.

Good luck, Eileen

dabs121 profile image
dabs121 in reply to Mirror368

Thank you Eileen. I have just started some hand exercises, so fingers crossed (not one of the exercises 😊), I hope that helps.

David

WRLM profile image
WRLM

ooooh! This is interesting. I had trigger finger in my left index finger for about 6 years before I finally caved and got a cortisone injection. That helped with the triggers, but it’s remains stiff and sore, particularly in the morning. About 2 years ago my right index finger started being stiff in the morning as well (no triggering yet.)

I was just diagnosed with Jak2+ ET less than a month ago, but my platelets have been high for about 8 years. My previous dr kept telling me they weren’t that high and not to worry. When I got a new dr and she saw my labwork she asked follow up questions (fatigue, headaches, night sweats etc) and referred me to a hematologist, where I was finally diagnosed (after a year long wait for my initial consult)

Super curious now if this could be related to an MPN. 🤔

ETA: I’m only on one baby aspirin a day right now. No HU or other MPN related meds.

dabs121 profile image
dabs121 in reply to WRLM

Trigger finger is a great description for it and it is good to know that a cortisone injection helped. It is good that you finally got a diagnosis after such a long period of high platelets then another years wait.

So far I haven't come across anything to confirm a link with Dupytrens and MPN's or HU so probably jerryfleet's response below is the most likely scenario and it is just the way Dupytrens progresses.

If I do come across anything confirming a link, I will let you know.

Cheers, David

jerryfleet profile image
jerryfleet

Hi. I've had Dupytrens for many years and I also take Hydroxicarbimide for last two years. Not noticed any correlation between the two. But Dupytrens does have periods of rapid expansion and also periods when it seems to have stopped or slowed down. So you are probably seeing coincidental Dupytrens period of growth.

dabs121 profile image
dabs121 in reply to jerryfleet

Thank you for your note. I was not aware Dupuytren's may have periods of rapid expansion, so maybe this is what is happening now.

Peter18 profile image
Peter18

Your post immediately caught my attention.

I was diagnosed with Dupuytren's contracture (DC) around twenty years ago and its progress was very slow, initially affecting one finger in one hand only. In view of this, I decided against surgery or taking any form of medication.

I was diagnosed with PV in 2018 and began taking daily hydroxy. The DC has been getting significantly worse for both hands in the last 6-12 months - but I have not (so far) associated it with the hydroxy. I'd be fascinated to discover if it's possible to move from evidence of correlation to a causal link.

Best wishes,

Peter

dabs121 profile image
dabs121 in reply to Peter18

Hi Peter, Your Dupuytren's progress sounds very similar to mine and like you I would be very interested to learn if there is any association with hydroxy. If I do find any confirmation, I will let you know.

Regards, David

Aldebaran25 profile image
Aldebaran25

That's interesting. I had a trigger finger (especially during the night) whilst on HU (I am now on Pegasys). It improved a lot with some massaging of the joint and now I don't have it anymore (also, I stopped the HU about six weeks ago). Incidentally, my mother, who is 90 , had a really bad trigger finger and had a cortisone injection which initially improved it , but then it came back . Her doc said he could not repeat the cortisone injection and proposed surgery; she resorted to a lot of massaging of the joint and exercising the hand and it went away!

dabs121 profile image
dabs121 in reply to Aldebaran25

My trigger fingers (I have 2, one on each hand, one middle the other pinky) are at their worst when I wake up. It is interesting that massage helped a lot, thank you, I will try that. I had heard that a cortisone injection may only give temporary relief and that you can't repeat it. That's great that your mother's had improved with massaging and is very encouraging. I'm definitively going to try a set a new regime to do that.

Thank you for your note.

David

gjh8733 profile image
gjh8733

Hi,

I have had DC for many years and had surgery about 8 years ago in one hand and enzymatic treatment in the second hand about 6 years ago - both were moderately successful however movement of my digits are still significantly impacted

In 2020 I was diagnosed with PV and took Hydrea at doses up to 2.5 gm a day for 18 months. I was switched to Besremi due to lack of efficacy

There was no change in my DC during the period on Hydrea

dabs121 profile image
dabs121 in reply to gjh8733

It does appear that the amount of success with both injections and surgery can vary to quite a degree. I'm sorry to hear your movement is still so reduced but thank you for sharing with us that being on HU doesn't appear to have caused any change.

Regards, David

Margaret2022 profile image
Margaret2022

Hi I have been on Hydroxycarbamide since last October and I have got a hard lump on the palm of my hand at the bottom of my index finger, I wonder if this has anything to do with it ? I get fed up with all these things going on with my body since starting it :-(

dabs121 profile image
dabs121 in reply to Margaret2022

Hi Margaret, It is difficult to say. Dupuytren's contracture usually develops over a long period of time, so it is unlikely, but worth asking about next time you see your Dr. I hope that it isn't. Regards, David

Dan73 profile image
Dan73

I got a lump in my palm about 20 years ago. I saw a hand specialist who diagnosed it as Dupuytren’s Contracture. He told me to come back when I could no longer put my hand flat on a table. That hasn’t happened and the lump is still about the same. I have PV and have been taking HU for about 2 years.

dabs121 profile image
dabs121 in reply to Dan73

Hi Dan, Like you I gained a couple of hard lumps about 10 to 15 years ago and saw a specialist around 8 years ago who told me it was Dupuytren's contracture. It's good to hear yours hasn't progressed while taking HU. Thank you for that. I'm beginning to conclude it is just the conditions progression that I am experiencing and it hasn't been due to the HU I am taking too.

Cheers, David

Innessant profile image
Innessant

,

I am 66 year old male with PV since 2013.Largely asymptomatic but have been on HU for 9 months now. Two years ago I had similar symptoms to your .I was unable to forma fist and had the early morning finger lock as well. One specialist suspected Dupuytrens.In my case I developed joint stiffness in wrists and knees as well. On blood and MRI testing I was found to have early stage Rheumatoid Arthritis.For one year I have been taking hydroxychloroquine sulfate . It is like a miracle and after 6-10 weeks it has virtually cured all joint stiffness. Not necessarily connected to PV but I wanted to share this anyhow.Good luck.

dabs121 profile image
dabs121

Many thanks for your note. I will make a note of hydroxychloroquine sulfate for future reference. My hands are not quite as severe as yours - yet, and touch wood, my knees and wrists are free from arthritis but it is good to hear of a successful treatment. Thank you for mentioning this at it may help others.

Regards, David

redumbrella profile image
redumbrella

I am currently on Hydroxy and have been for about 5 years, the year before I had an operation for

redumbrella profile image
redumbrella

Hi David, I am on Hydroxy for about 6 years for P.V. Two years I had an operation for D.C. this condition preceded my Hydroxy by many years so in my case would not have had anything to do with the medication.Garry

dabs121 profile image
dabs121 in reply to redumbrella

Hi Garry, Thank you for sharing that. I hope your D.C. operation worked well.

David

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