Hi everyone... just need to put this out to people who would understand.... i was diagnosed with PV 3 years ago and had some kind of uneventful itching for years before that but I’m now at a point where I am just so tired of the intense pinching/itching which started a year ago....... I can’t take a shower, washing my hair over the sink sets off the pinching in my arms; I can’t get dressed, changing clothing is hell; I can’t exercise.... there’s a lot I can’t do anymore because of it ! It’s just so bad!
I have tried EVERYTHING.... EVERYTHING!!!! I’m just weaning off antidepressants now cause I tried that with not even a dent in the symptoms.
I have tried OTC and prescription antihistamines;
Beta alanine; Zyrtec & Zantac; photo therapy (even bought my own panel); tanning sessions (before hydroxyurea) ; I’m on 500 mg hydroxyurea every second day. I drink a lot of water; I’ve cut out foods that can cause histamine flare ups ...I have tried really hot showers or really cold showers; putting on moisturizer causes flare ups, tried spray on moisturizer and that causes flare ups......but my skin is not dry anyway just trying anything!!! I cry and scream so much !! It’s not “itching”, it’s intense pinching everywhere but worst from waist down but it’s all over and it’s there everyday and I spend my day trying not to do anything or move in such a way that sets off the pinching!! I do have breaks throughout the day but as long as I don’t do any of those things to cause a flare up .....it’s always just sitting under the skin waiting for a pinching/stinging explosion!!!
I’ve been working from home for most of the pandemic and have been able to wear my pyjamas everyday (sadly) but as soon as I get dressed when I have to go out, the pinching is in high gear! Really I have tried e v e r y t h i n g !!!!
I’m in Ontario Canada and the only way I may be able to get jakafi without having to pay $8,000.00 a month (which is out of the question) is if absolutely every possible medical and non-medical thing has been tried to reduce the itching which could take forever to go through. And is there any guarantee that jakafi would even work. Pegasys is no longer available in Canada and would that have even worked! I don’t know what else there is ... going to call my hematologist on Monday to see what else I can try but I don’t think the doctors or anyone really get how bad it is... .... how about gabapentin?? Anyone try gabapentin for this ???
Keiks, my heart is breaking for you. I have been where you are and I understand how horrible it is. I itch when I brush my teeth! What you have described,I know, but at the moment things are better and I am managing. Like you I can't get ruxolitnib due to the cost but I am hoping to get on interferon soon. Fingers crossed for that.I am in the UK and unfortunately I don't know what gabapentin is.
Last year I had a course of photo therapy which lasted 3 months and was supplied by the National Health. For the first 2 weeks the itching intensified as I was warned and then slowly the itch disappeared completely. Unfortunately, it did start again about 2 weeks after the course finished but for about 3 months I felt normal. I am just saying this in case you need to give it longer and by medical professionals, I don't know what you can get in Canada .
Apart from that I use an oil based moisturizer but not very often. The water based ones made things so much worse. I take fexofenadine (antihistamine). Like you I practically live in soft cotton pyjamas.
I think you should definitely call your haematologist, can you see an MPN specialist?
Oh thank you for your empathetic and understanding response.... I’ve been through it all to get some relief. I’m sure you know that if not for this debilitating problem I could live my life normally and actively with PV. This is mind blowing to me! Fingers crossed something has to happen!! Thanks again!! XO
I didn’t mean to offend anyone Keiks. I am sorry if you received it that way. I have Myelofibrosis and have my own pain and journey. I was simply sharing what I personally know, think and feel as everyone else appears to be aloud to do. I too have had my life turned upside down. In constant pain throughout my skeleton and joints. Your harsh words are very hurtful even though I’m sure that was not intended x
Don’t believe you ... you specifically mentioned a particular organization/location....you assume I don’t have a spiritual connection.. you don’t know. But if you do suffer with myelofribrosis then I wish you as well as possible under the circumstance.
I’m not sick in the head, just my body. Who would ever make that stuff up! You just mentioned you’d tried everything and I actually was envious as that’s where I would personally go. Like I say, I’m sorry if you took it the wrong way. I have been through hell for ten years and I thought we were aloud to love on each other not send hate messages. I do understand pain drives us crazy but really you don’t know me and have jumped to a lot of conclusions. I hope you are mightily blessed and that you will be totally healed, and yes I really DO mean this x
When I said I don’t believe you I was talking about your intent on that first response not your illness... I believe your illness but you should be clear when you respond like that .... you implied that I should try going to church, specifically Toronto airport church .... why would you be specific. Anyway I feel I’m being gaslighted ... don’t worry about it ... I really do wish you well as I would everyone else here on this forum. Maybe we started on the wrong foot..... be well.
I fully understand how you feel, I’m going through the same symptoms.It makes one feel utterly miserable . I’m due to start hydroxy on Friday although , I’m anxious I’m hoping to get relief from the awful prickling and itching . Like you, tried everything and nothing works .! Hope you get relief somehow.
Don’t be anxious about the hydroxyurea... I had my pills on the counter for 3 weeks before I finally took them. No problems but I’m only on 500mg every second day so it’s doing nothing for this awful pinching/itching/burning... my God I hope something comes along and works!!! All the best to you!!!!
I agree with Keiks in that hydrea makes no difference to the itch (I'm calling it the itch but that encompasses the burning, prickly, inflamed etc). I have been suffering since 2015, but diagnosed and started hydrea in 2019, and am now up to 1g daily. I manage it because my whole life revolves around it. The only relief I have had in this time is the photo therapy which I am due to have another course in the near future, and I shall continue my medication as I did last time. I feel for anybody who is struggling with this. Like Keiks I can tolerate the fatigue, night sweats and abdominal discomfort but the itch is cruel.
JP1952 you worded it perfectly....”I manage it because my whole life revolves around it”. People around us think we’re doing alright BUT I’m alright because I’m not taking a shower like everyone else can.... I’m alright because I’m not dressing the way I want to or avoiding getting dressed , I’m alright because I’m doing everything I can to avoid a pinching/itching/burning/screaming/crying episode ....etc etc !!!! And your symptoms are exactly as mine are as far as the fatigue, night and sometimes day sweats and abdominal (including splenomegaly) discomfort... we need a miracle for this pinching/itching/burning!!!!
I just noted the original post you had disappeared. Hoping you saw the responses from that original post.
Toe recap - It is ironic (and ridiculous) that a medication manufactured in Canada is so difficult to access these. Particularly when Jakavi is approved for use for PV in Canada for the purpose you need it for.
Hi hunter... your absolutely right ... it is ridiculous, it just doesn’t make sense to me ..... I have been with a new hematologist since January... he is part of the oncologist hospital in Toronto and on our last phone appointment a month ago he did mention that if the few things we’re trying don’t work then he will look into getting the jakafi for me but in order for them to deem it and the assistance “necessary” I would have to try everything else first which I guess would make sense if I’m to prove I need the medication. I have done some research on it and thanks for the links you pass on but since you do a lot of research what is your opinion on jakafi overall for PV ???
I definitely think it is one of the most promising of all of the PV medications specifically for symptoms driven by deregulation of the JAK-STAT pathway. That is why it works so well for pruritis. There are other JAK inhibitors in development but for now Jakavi is the one that is available.
While I think that PEGylated interferon is likely superior in terms of actually being disease modifying, there is no question that Jakavi is very effective at symptom control. The combination of the two has proven very effective for some people with PV.
You have exhausted all other reasonable options. Now is the time for Jakavi if that is the treatment you want to pursue. I think you have been though enough. Time to get what you need. I would pull out all the stops and make this happen. It may be that the patient assistance program at Novartis can advise/assist you with the process of getting Jakavi authorized. I would do whatever is necessary to access the care you need.
From the wisdom of Yoda "Do or do not. There is no try." Sounds like it is time for "Do" get Jakavi. There is no "Try".
Thinking outside of the box, and truly have no idea if it would help, but have you tried epsom salt bath?
Though I am no where near the distress you are in, it has helps me with itching and muscle ache and pain. there was some evidence that itching is caused by minimal firing of pain neurons, I don't know what the current state of that study is though.
Hi not sure if this would help you or not but I suffered the same horrible itch/sting a few years ago and I used to put wine sleeves that you put on your wine to keep cool on my arms. The ones with the Velcro on so I could really put them at the top of my arms as that was were the worst sensations were. I also used to put my arms under running cold water before I put the sleeves on it was especially beneficial before going to bed. You would need to put a towel under the sleeves as they start to melt after a while but this did give me some relief and was able to have a couple of hours sleep. Hope this helps mine did eventually ease. Good luck x
Dear Keiks, my heart goes out to you as I have experienced the same as you with the truely awful pruritis. I was diagnosed with PV in 2006 and the itching didn't start until 2009 but it was horendous. I tried everything to try to find a way to take a bath or shower but in the end gave up competely. I washed my face and hair in the basin and used my bidet for my undercarriage, and for everthing else I used a wet wipe. And I spread these tasks over several days as the distress and pain was too intense to do otherwise. What you are experiencing is a severe form of aquagenic pruritis and some of us with PV do get this severe symptom. It seems it's caused by a release of cytokine proteins into the blood stream. I have been taking ruxolitinib since 2015 and it gave me my life back! I receive it because I have been participating in a research study. That is finished now but Novartis continue to supply it free of charge on compassionate grounds. Because your symptoms are so severe, you should qualify on compassionate grounds too. You need to get access to an MPN haematological specialist who has the right contacts. Please don't despair and believe me when I say "It is not in your head"! People don't understand just how bad this condition can be but the group here are very supportive and that does help.
By the way I live in the UK now but I lived in southern Ontario for 14 years and knew the area around Toronto and Waterloo quite well.
Hang in there. Ruxolitinib does work and if you can have access to that treatment, it should really help. In the meantime you might think about trying some UV-B phototherapy has I found that helpful before I started receiving Rux. You'll need to approach a dermatology dept for the UV-B light treatment. You start at a very low exposure ...... Maybe 15 seconds per treatment and build up to 5 minutes and once at that level twice weekly doses do reduce the severity of the pruritis . Also you could try some sunbathing but be careful not to overdo it. The phototherapy only works while you're receiving the treatment, the effect wears off very quickly when treatment stops. But you can get some relief.
Another thought is that you should avoid using most creams and moisturisers as they are nearly all water based. I have found using oil based products much better. Even oil shower gel might be a help to you. I didn't know about this type of product previously but I use it in the shower now 'cos it's very soothing and better for my skin which tends to be dry. I do hope that you get the help that you need as soon as possible. Reading your post reminded me so vividly of how life was for me before Rux. Wearing clothes made of soft natural fibres like cotton or mixes of cotton and tencel are the best. Take care, best wishes, Lyn
Oh nice ... I grew up in Toronto! Everything you described is EXACTLY what I go through especially when you mentioned so called “showering” over days .. that’s me ! I describe it as showering in bits and pieces over 3 days!!! OMG your response has made me feel like there may be some hope!! When you say that ruxolitinib has given you your life back.. do you mean you can now have a normal shower?????? You can get dressed without having a 2 to 5 hour screaming episode, etc??????
Thanks for your suggestions too but I have tried all those too, I actually bought 2 phototherapy panels ... just doesn’t give me relief anymore... a couple of tanning bed sessions used to give me a week or 2 of relief but not anymore. I definitely believe I qualify to get ruxolitinib on a compassionate level because I’m just constantly in a state of the pinching/stinging/itching/burning sitting under my skin waiting for an explosive episode which always comes. So can you answer my questions about how it changed your life please please????
Hi Keiks, My experience with Rux was starting out on a minimum dose of 5mgs twice per day and then gradually increasing over several months to get stability in my blood test results. I used to go to Oxford every 2 weeks for tests, meet with the consultant and then may be slight increase in dose. What blew me away was that even in the first week at the lowest dose I began to feel better in every way including the dreaded itch. And as the dose was increased little by little the itch went away completely. So since on Rux I can shower and dress normally without any hassles. It's been a complete joy and I appreciate it every day. Steve .... my husband and I were just so happy 6 years ago 'cos I'd really been suffering pre Rux. There are a couple of downsides with Rux ..... weight gain, wind as in burping and farting for an army and constipation. I take one Movicol per day to manage the constipation and a probiotic with lots of lovely friendly bacteria to try to keep the b and f under control. Weight gain is an issue but I usually manage to lose a bit of weight over the summer and do eat a so called Mediterranean diet so as to be as healthy as possible. I have become quite breathless in the last couple of years since having flu very badly but for a 70 year old I'm OK. It's not perfect but I am so grateful to feel fairly well and to be able to get on with life. So I Do wish you the best of luck and showers of blessings. I do hope you get what you need to feel a lot better. Lyn
Ohhh I will put up with the b and f and some weight gain if I can get rid of this dreaded itch anytime!!! I would love to just be able to take a shower again and get dressed without screaming!!! Unfortunately it’ll take some time before I may see the rux prescription... my doc would have to build a file by having me try whatever I can to prove that I might qualify for the med on compassionate grounds without paying the big price... I just don’t understand why it costs thousands and thousands per month for that medication!! How much weight are we looking at and obviously you can lose it because you lose weight in the summers. Is it a lot of weight?
I have been on Rux for 3 years, there is a tendency to put on weight for some people, if you let it go, I stopt sugar and and refined carbs and my weight is the same as pre Rux, you just have to be more careful re food and exercise but not excessively, UVB can take a while to work for some, maybe try daily sessions for a few weeks slowly increasing the length of time every day but dont burn,if you do it in the morning your skin can be bit pink in the evening but should go back to normal within 24-48 hours, I would be surprised if it doesnt work, if doing UVB is probably best to keep in touch with a dermatologist , I get my skin checked every 9 months and even after 8 years of daily low dose UVB narrowband its fine if not a bit dry but cancers, nothing frozen, its doible if your careful, my machine is a a medical one by Waldmann, it used my medics, not the cheapest but very good
Hi Keiks, typically people put on somewhere between 5 and 10% of their pre treatment weight. And then I've found that I put a bit more on over the winter/lockdown and then do my best to take that extra weight off over the Summer. Salads and stirfries rather than roast dinners and christmas pudding! But I don't seem to be able to lose the weight that went on very quickly in first 3 months of treatment. That is very subbornly attached to me and I maybe don't have enough will power for semi-starvation. I used to have a tall stender build ..... all my life until about 50 and then I put a little weight on but I am now over weight for my height and I really hate it, but I'd much rather be taking the Rux than coping with the mess that I was in pre-Rux 6 years ago.
Hiyou have some good replies already, my sympathies re the the itch, I have PV and have had the itch since 2007 although diag in 2010. I now have a system that has sorted if not cured it. I had UVB at a clinic in 2011 three times a week, it reduced itch by about 80% , I also found fairly vigerous exercise such as jogging for 30+ minutes helped pre shower. I then bought a big UVB machine and have it in my bedroom and have daily short sessions, I have light skin so only takes about a minute. It helped so much that I also bought a smaller one I could take when travelling or holiday. I started Ruxolitinib/Jakavi in 2017 (due to becoming too iron deficient after 7 years of venisecting only) and that has also helped a lot especially at higher doses. I am in the UK and had to get it on compassionate grounds from Novartis. I failed on Pegasys in 2013 (made me itchier and depressed) and because I was having daily UVB and my mother died of skin cancer spreading I did not want to use HU (can cause skin cancers), I saw a expert Haem at MDA Texas and he wrote my local haem saying I was not a good candidate for HU (which for most doesnt help itch anyway). My local Haem then did a good job in applying to Novartis and 3 months later I was on Rux. Not a easy journey but it can be done if you are determined and persistent. In the meantime for you the sun does the same job as UVB except sun is UVA and the full spectrum UVB hence more skin cancer risk , UBV phototherapy is usually UVB only and narrow band 310NM which is supposed to be the safest band. Wishing you luck , feel free to ask me more if you wish.
Hi ... yes I have done the phototherapy UVB... when it worked for a period of time I actually bought 2 panels which were expensive but cheaper and much more convenient then having to go to the dermatologist BUT then it stopped working for me.!!! Eventually my hematologist will have to look into getting Rux in way of compassionate grounds.... don’t know when that might happen. Did you have weight gain on it? ???
Really I don’t care if it gets rid of this hell but curious as to how much you can possibly gain on rux.
Just caught up with this thread, and it's very interesting that your symptoms Keiks and Lyn's sound so similar to mine, and also we all do the same strategies to avoid a flare up. Isn't it the worse when it's been going on a while and you don't know which bit of your body is giving you most grief, pacing up and down trying to smooth your arms, then your legs, while your torso is scratchy and prickly, so you curse and cry in turn. Anyway,I am hopefully starting interferon soon and I was hoping that might help, I'm sure I have read previously that it has helped some people but obviously not Ainslie, so I'll have to wait and see. The MPN specialist I saw told me ruxolitnib was out of the question because of the cost, think he mentioned £40,000. He did say it was sometimes given compassionately but obviously he thought I didn't qualify. I am quite jealous in a nice way that Lyn and others get it. It would be wonderful to live normally.
Oh my lord ... I don’t remember “normal” but I want it back badly !!!! Itching has not eased up for me ... I’m still trying different things and some with my hematologist’s help. But I’ve tried so many many many many things and it’s really wearing me down and I’m feeling hopeless!! It has taken over my life. If it’s not making me scream it’s sitting just under the skin waiting to explode. I really don’t know if I may get the Rux on compassionate grounds at some point because it’s really really hard to be eligible... here in Canada it’s about $10,000.00 to $14,000.00 for a months worth (who is actually paying for it?) ... my 34 year old nephew who also has PV and unfortunately suffered 3 strokes and 2 heart attacks in one night a few years ago (he had just been diagnosed at the time) was refused Rux on compassionate grounds... it’s ridiculous!! Just so much wrong with that!!! I’m jealous too, in a nice way of those who can get it ... I think, I’m not sure but I think the cost is like any other medication in the U.K. ...and I ask why is it not affordable to us !!!!! What country are you in ???
I'm in Wales in UK. The National Health is wonderful but expensive drugs not easily available. This is true for other diseases and drugs, not just MPNs. Ruxolitnib is available for younger patients of child bearing age , patients with MF, and other patients who cannot tolerate any of the cheaper alternatives.Ruxolitnib has recently been trialed here as a drug to treat covid so I guess it's even more previous now
I am shocked that your nephew didn't qualify given his age and the severity of the thrombotic events.
I have accepted that my life must revolve around the itch from the time I get up until I get to sleep at night. Starts with taking a fexofenadine half an hour before I get out of bed. When I do get up my arms will pinch as if the school bully has been at them, above my knees will feel inflamed and burning, and my calves as if the hairs are sticking into me like pins. Dressing really quickly to get out for a run or a walk, the itch eases after about 20 minutes brisk exercise, as if my blood has warmed up. Quick hot shower with ridiculous strategies of immediately wrapping and patting with warm towels, sometimes an oil based moisturizer, the itching will then last about half an hour while I pace about talking to myself. So it goes on, eating anti inflammatory meals, wearing soft cotton pyjama bottoms and husband's old baggy t shirts. It's relentless and exhausting.
Good thing I am retired, no way could I work with this. I am starting another course of photo therapy next week but worried about some moles on my body, unfortunately, can't get a face to face with the dermatologist. Beginning to feel everything is a fight at the moment.
OK so really sorry, I wanted to sympathize with you and I've turned it into a long moan. However, you do sound at the end of your tether so maybe be persistent, I used to work in a customer service department and unfortunately it was very much the case of "he who shouts loudest gets heard".
Keiks, try 10 ml of liposomal vitamin C 3 times a day for your itching. You can also benefit using it along with 10 ml of liposomal curcumin as it is a STAT2 inhibitor and can also calm the itch. My wife kept night sweats and itching at bay using it for MF until she started Jakafi.
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