I have now been diagnosed with PV JAK2+, previously diagnosed as ET. I am taking Hydra 11 x 500 mg tablets a week, plus daily 75mg Clopidogrel with a monthly venesection. My blood numbers are slowly coming down. However over the last few days I have developed what I can only call a large-ish light red blotch on the top of one of my feet, below the toes. It is almost dark red at the edges. It is not painful but does itch now and again.
I intend to try and speak to a clinical nurse at the hospital centre I attend but wondered if anyone else has had this symptom and is it a normal PV symptom, or a reaction to the drugs, or something different and not related to the MPN.
Any advice or comments would be appreciated.
David
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DavidBates
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Hi David, I wonder how long you have been taking HU? You don't take an excessive amount but we are all different so speaking to your consultant or specialist nurse is best. I don't recall having such a rash when I was taking up to 21x500 per week but again we are all different. Do you happen to have pets?
I was diagnosed originally with ET April this year and have been taking HU since then. I was started on a smaller dose.
I have spoken to the specialist nurse who thinks any rash as I described would have shown up before now and may not be PV or drug related. She suggested I see my GP to eliminate any causes, so I have booked an appointment with the usual wait. I have outlined the blotch with a pen to see if it gets any larger.
We do not have any pets but my wife has a pony. He does not have access to my foot but does occasionally stand on it. However I cannot blame him this time!
After waiting for over a week to see my GP, the rash had almost gone, but there was enough left for him to see and he thought it was a fungal rash and gave me some cream. It has almost gone now. Nothing at all to do with PV.
Interestingly, he was not one of the usual surgery doctors, but someone drafted in to help. He had semi-retired to West Somerset and been seconded to cover holidays. He was actually knowledgeable about MPN's. He came from a surgery in Bristol with over 11,000 patients and had 4 PV cases on his books, albeit they were all over 80 years of age.
I'm JAK2+ve and take 10x500mg hydroxycarbamide (hydroxyurea) each week and 75mg Clopiogrel daily, have the occasional venesection and various blood pressure and cholesterol-related medicines.
I occasionally suffer three skin problems but with different symptoms to yours: acne rosacea, mainly on the face, athletes' foot between and behind the toes, and reddening of the skin above my ankles after a long walk.
The acne is, I'm told, a side-effect of the hydroxycarbamide. It's treated with Lymecycline capsules and topical metronidazole. The athletes' foot is no longer effectively suppressed by "off the shelf" creams which, I understand, relates to slowing of the natural rate of skin cell replacement because of hydroxycarbamide, so I now use prescription Daktacort, which includes cortisone. The reddening ankles appear like a rash after walking, say, 5 miles or more. They relate to a circulatory problem that might be medicinal or age-related. At a recent visit to a nurse practitioner, he said that bruising of the feet is symptomatic of hydroxycarbamide use, along with acne rosacea, although I don't have that problem.
So, your skin problems might or might not relate to hydroxycarbamide but, in my experience, I didn't get any of mine before I started taking it three years ago. As far as I know, Clopidogrel's side effects are rare but usually gastric, like nausea, but I don't suffer from that.
The main thing is not to worry. All these skin problems are irritating but relatively minor, and all have been dealt with in a straightforward way. You've done the right thing: by talking to your specialist you're sharing your concerns with people who know what to do.
I spoke to my specialist who thinks the rash I decribed may not be PV or drug related and referred me to my GP to check it is not something serious. Please see my previous post.
I lost a toe to a blood clot which was when I was diagnosed so I get a bit nervous about foot problems. I cannot afford to lose any more toes!
I was diagnosed with ET April 2016 and put on hydroxycarbamide and clopidogrel, and had a good reduction in platelets, but had sudden extreme fatigue in December. The haematologist did not believe it was related to the medication, but it continued and he change me on to Anagrelide and aspirin, however the fatigue still continued, but my doctor was concerned, checked my pulse and did an ECG, finding that I had an abnormal heart rhythm, so went into hospital immediately. My cardiologist raised his eyebrows when I told him that my haemo't had never done pulse and blood pressure checks on each visit. After a week in hospital, two cardioversions and medication changes, I have now got a steady rhythm, with maintenance medication, no more fatigue episodes.
During this period this year I had another marrow biopsy, and the ET has now changed to myelofybrosis , so I am now on ruxolitinib and aspirin. In August I developed shingles, the side effects of rash on back and lower chest , I am still experiencing, but generally feeling much better.
I would advise that if you and on hydroxy' , anagrelide, that you ask for regular ECGs, particularly having fatigue episodes.
I find pure aloe vera gel good for easing rashes, and teatree soap and ointment good for controlling athletes foot infection. Teatree oil can be a bit too effective if the skin is soft.
My cardio't told me that I may get bad side effects from the drugs in 10 year's time, if my myelofibrosis doesn't get me first !!!!!
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A more general question: What is the source of ET/PV? Does people with PV/ET had it before birth, from childhood, or it appeared later? How?
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