I’ve been on Hydroxycarbamide for 10 years now for ET JAK2+.
For a few years I’ve had tingling in my legs and feet. However , they don’t tingle anymore but feel numb now. Also had burning skin .
I’ve literally just read that peripheral neuropathy is a side effect of HU. These symptoms I’ve got are same as peripheral neuropathy.
Any advice please as to what I should do ?
It’s not always a side effect of the medication. You should definitely report it to your hematologist. Your blood work may have changed and you need to look into it.
This needs follow up with your MPN care team and likely a neurologist ASAP. You may wish to discontinue the HU in consultation with your MPN care team. There are alternatives, including Pegasys. This is a decision that needs to be made promptly in this situation.
my Gp has made urgent referral to neurologist but I phoned them as he referred me in June .
I was told 61 week wait so won’t hold my breath.
I’ve just seen my haematologist and not seeing them until October now. I’ve already had to complain to Professor Harrison as Haemo woukd accept that high ESR increased platelets . I told him he should be looking into the high esr instead of keep increasing the HU.
Had 3 increases last year and this numbness has come on since the increases. Before tgat it was ringing.
Anyway, Professor Harrison got back and saying d ESR of 83 definitely indicated an inflammatory condition going on and to reduce HU.
The very next day I got phone call from my Haemo saying he’d been thinking about it and dad to drop one of my tablets on a friday and he’d be doing referral to rheumatologist. …… 49 week wait so I got in touch with PALS and low and behold appointment came through for next Tuesday .
I’m convinced now it’s the Hydroxycarbamide. All makes sense.
It’s either that or Macrotosis . Which is B12 folate anemia
What you relate is ample cause to be suspicious of the HU. Note that macrocytosis is the normal effect of HU. Docs actually use it to monitor compliance since it is expected to occur.
The longer this goes on the less likely it may be to resolve if the HU is the cause. Suggest not being patient would be prudent. There are other treatment options that may work better and be more tolerable. I was unable to tolerate HU and was refractory to it. I did much better on Pegasys to control the PV with thrombocytosis. In my case, it only took 8 weeks at 45mcg to get the platelets reduced to the 400s.
What you are experiencing should be considered an emergent condition that requires immediate attention. I would seek a second opinion about changing medication ASAP.
Do you think I should email Professor Harrison again then? She’s not my haematologist but I’ve seen her twice for her advice on things .
I would contact whomever was in a position to help you sort out to do. You have a valid concern about a potentially very serious adverse reaction. It would be prudent to explore alternatives urgently that may be safer given the circumstances.
I emailed professor Harrison st Guys Hospital this morning but she’s in annual leave until tomorrow.
Hopefully she’ll pick it up and reply .
Macrocytosis is a concern too as relates to peripheral neuropathy due to B12 folate
Hi,What is the connection with B12 please? My mums B12 is really high (x4 normal)
I don’t know anything about high B12. Does she take supplements?
Stopped taking all supplements
How long ago and was her bloods tested after stopping them?
What was she taking?
Mum is 82, and stopped taking about 3 weeks ago daily Well woman, and B12 after blood work showed B12 and Potassium were sky high. A repeat test was performed last week pending results
If she had a blood test after only stopping the supplements for 3 weeks then they won’t be accurate. You need to be off anything that contains B12 for 4 months before testing B12.
Having high potassium is worrying as can cause heart attack or stroke. Her Dr should be dealing with this as of great concern
I saw your previous comment suggesting a B12 relation with peripheral neuropathy
Yes low active B12 and low folate can indeed cause peripheral neuropathy.
Does she have it? Is she taking HU?
I read on this forum that B12 is a must when taking HU as the medication depletes it. She has been taking HU everyday last 10days and no supplements as B12 was so high
Mind you, mum is abit partial to fresh beetroot juice... which is probs why b12 was high. All stopped now
You cannot overdose on B12 as it’s water soluble.
Serum B12 is pretty useless as it doesn’t tell you what is getting into the cells.
Active B12 is what needs testing.
So she’s only been on HU for 10 days?
Where did you read on the forum that B12 should be taken when on HU ?
It was a reply from someone on an old thread on this forum..
Mazcd can you take a look at my post please. I’m really worried now this tingling has turned to numbness over last 8-9 months.
Been more obvious since wearing loose summer trousers than when wearing skinny tight jeans
Many thanks Rose
Hi Rose, I will reply to the private message you sent me. Maz
This is what happened to me after only 7m on HU. I experienced a horrible burning sensation in my lower legs, from knees down to soles of my feet.
After consultation with my GP and haematologist I stopped taking it.
I suffered with PN for months. I didn't think it would ever go away.
It did eventually but it was a long, hard road.
Please contact your haematologist asap.
Might be time for an alternative medication.
I hope your PN settles down quickly if you choose to stop HU.
Best of luck.
Hi,
Did you ever find out what was causing the numbness?
Is it primarily in your toes?
it’s in my feet lower legs lower arms and hands
Haematologist / outcome 
Hydroxycarbamide Dose 
Hydroxycarbamide side effects.
Hydroxycarbamide
Starting hydroxycarbamide and scared!
