I am 41, have ET that has progressed to PV as well now.
I was on aspirin alone for about 12 years, then when my platelets hit 1100 my hematologist advised to start additional treatments. I tried Pegasys first, which to my greatest disappointment I didn't tolerate at all. I have been on Hydrea for over a year now (500 mg per day), but struggle with shortness of breath and extreme fatigue. I saw my specialist last week, who suggested I start on Rux and aspirin instead.
He also prescribed anti shingles medication to be taken at the same time.
I am nervous, after my experience with interferon and Hydrea.
I think many people are taking Rux already. Does anybody have any advice about it ?
Thank you very much.
Mary
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JustKeepSw1mming
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Rux is usually easily tolerated, I would be optimistic you will have no problems. Pegasys can be a great drug for many but the drop out rate is quite high, I dropped out after 3 weeks, I am on Rux 7 years with great results and no sides. Getting the Shingrix vaccine is a good idea and keep an eye on your weight, weight gain is commonly reported but in my opinion it is controllable by eating better and fewer calories or more exercise and preferably both.
Thank you very much Ainslie! Very glad to hear that it is working for you. Gives me hope
My doctor prescribed anti shingles medication to be taken for the first 3 months of rux (wonder if that is a common thing to do). I will be asking for the vaccine as well. He said I should be OK getting vaccinated even after I start it.
I am keeping my fingers crossed this will be a good change for me
I think giving antivirals instead of Shingrix is a bit unusual, most haems suggest just getting Shingrix as far as I know, I would be inclined to ask your doc what the reasons are.
I've been on Rux/Jakafi for several years. I got on it because I still had severe itching with PV when I was on HU. I now no longer take hydroxyzine/Atarax for itching several times a day, and no longer have to get light treatment for the itching. It does lower my immunity some, though. It has made my life much easier. My skin used to be so reactive to any indoor space with a hint of mold.
Hi Mary. Rux/Jakafi was a game changer for me (no more PV itching!), highly recommend! Takes a little trial and error initially to get the dosage just right (in terms of blood levels: not too low or too high) but once you do, it is easy after that and my levels quickly stabilized. My mutant allele burden reduced considerably after 2 years from 60% to 25% on Rux. Hope to get that tested again next year to see if it has reduced further after another 2 years. I haven't ever taken an anti-shingles medication, but I did get a routine vaccine a little while back. Good luck! Helen
Rux has a nasty habit of causing rare sarcomatoid squamous cell skin cancers, especially if you are fair skinned with a history of sun exposure and a previous basal cell carcimoma , as I had. I’d lived in Australia. So do get any skin lesions checked out. Good to have a baseline skin check. But rux was great for keeping my MF in control. And, interestingly, unlike most meds that reduce cell counts, it increases, not decreases, hair growth. It did make me anaemic, however, so I've just now switched to momelotinib.
About to head into town for 3 week blood test to see how I’m doing.
I have ET Jak2 positive. I was on HU for almost 6 years. Severe stomach pain, constant diarrhea, and weight loss of 30# when I was already skinny. Mouth ulcers, fatigue, etc. Went to Peg, and couldn't tolerate it either after 3-4 months. Have been on Jakafi for 3 months now. It has the least side effects for me. I've gained some weight, which I needed, but will have to watch it that it doesn't get out of hand. Mouth ulcers are all but gone. No stomach pain. No itching or lack of energy like with Peg. My hair loss is slowing down as well. The only side effect other than weight gain for me is constipation, and gas. I do take a shingles prevention pill along with the Jakafi, and already had the shingles vaccines.
Hi, hope you don't mind me asking, how do they tell if your ET has developed into PV? I was told I have ET, but have been getting venesections for the last year and when I asked if that was normal for ET i was told that the ET Can sometimes vary from ET to PV?? I don't know if this is true or not as I haven't seen any information saying any of this but was told this from.a nurse , i am due for a haematology appointment in January so will ask them but as far as I can see venesection are usually only if people have Pv, my hemocritic levels are bit high but nothing too bad
I have a PV Dx with ET like features. So I consider mine vague to an extent and maybe it would fit your Dr's description.
Is your Dr saying it can continue to move both ways between the different conditions? That would be unusual vs being unclear or progressing to PV. In your case, if your Dr feels venesections are required that is very PV like. What have your PLT and HCT results been? My Dr has said HCT upper limit can be looser if the Dx is ET (for PV it's usually 43-45, below standard limits) .
A BMB can help determine which one, the type of "cellularity" found is one factor. Mine mostly indicated ET so for me the BMB was not the final word.
One advantage with PV Dx for now is access to more treatments.
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Unbearable itching! Any ideas to calm it down?
