Hi everyone…. Not having a good day and just wondering if anyone else feels the way I do. I call this PV an ugly disease because it has taken away all the things that human beings take for granted. I am extremely symptomatic in that I feel and suffer all the symptoms PV has to offer!! Can’t take a 60 second quick little shower without suffering afterwards with the severe pinching that lasts about an hour to a full day … it sends me into oblivion with the screaming and crying and rocking back and forth. I get the same result just getting dressed or trying to exercise so I try to avoid those things as much as possible. The severe sweating is so intense several times a day and night which puts me in a position where I need a shower but can’t ! I was diagnosed 3 years ago and have aged 10 years since. I’m not the person I used to be and I’ve had to push so many people away because I can’t just get up and go or because they just don’t understand which includes people in my own family.
I’m still able to do my office job more or less on my schedule thank God because I need the distraction and the sense of worth it gives me. I’ve put on 25 Ibs and there was a time when if I gained a few pounds I was able to get it off easily but now with all those intense obstacles I haven’t been able to.
Believe when I say I have tried absolutely EVERYTHING for the pinching/itching/burning…. Really everything you may think of I tried it and spent so much money trying including $2000.00 on a phototherapy panel. I’ve tried medications and a naturopath and OTC’s so really I’m not looking for someone that will help at this point. So this is not about whether anyone has any ideas this is just about venting and just wondering if I’m alone in this hell with this disease. It’s truly an ugly disease if your symptomatic in this sense and has put limits on my life.
I am so sorry that you are suffering so much with PV. I suffered with horrendous itching just as my ET was progressing to MF and I scratched myself so hard, day after day, that I drew blood and still have many little scars.I am wondering if Ruxolitinib would help you. As far as I know, it's more often prescribed for MF but the symptoms it really helped me with were itching and night sweats. It must be worth asking your haematologist as nobody should have to suffer as much as you are.
Sorry to hear that you continue to have such a rough go of it. If nothing else, know that you are not alone. We can at least be here to listen to you and offer what support we can.
I recall discussing the struggle to access Jakafi where you live in Canada. I would think that you have ample grounds to try to appeal for compassionate relief. I hope you will be able to push for that.
I just recently found this from some lovely people in Canada. Listening to it just makes me feel good.
Hi Hunter … the link is not working 🥺 are you able to send me the YouTube title or a better link?
ALSO I had my appointment with my hem today and we need to try one more thing … gabapentin… (he doesn’t really like it but trying it for the sake of trying) if it doesn’t work then he’ll be looking into getting the Rux for me….. it wouldn’t be something I would be on indefinitely if it does work but unfortunately we have to build a strong case to get rux on compassionate grounds. My list of trying different things is long so the future is already starting to looking better…. 🤞🏼🤞🏼🤞🏼Not there yet but a step closer for sure !!!
Gabapentin can help with neuropathic pain. Maybe it will help. It may just be another thing you have to tick off the list to access the med most likely to help. Regardless, at least it is another step.
I don’t have not much to offer in the way of understanding of what you’re going through - but I’m glad you came to vent rather than being alone in your suffering, especially on the roughest of days like today. You’re such a strong and resilient person with an incredible capacity to endure, and you deserve so much better than the hand you’ve been dealt. Wishing the very best for you Keiks, I hope you can get access to Jakafi soon and that it gives you the relief you need 💚
I can relate to everything you have described about PV. I too am very symptomatic , prickling , itching after a shower. I also, dread getting dressed because it starts all the symptoms again you are not alone . I find taking a warm bath is better for me the symptoms are not so severe.
Thanks Kiki64 …. Nice to hear from a fellow sufferer … you know what I’m going through and as beautiful as it sounds there is no way I can take a warm bath. 🥲🥲. I want a warm shower or bath so badly!!! 🥺🥺
Hi keiks- I really feel for you and understand exactly what you are going through. I suffered for about six years until I was lucky enough to be prescribed jakafi As you say nothing helps. Nobody can possibly understand what it’s like unless they have been through it.Hope you get relief soon - for the few people with PV and itching, cost should not be the important factor and ruxolitinib prescribed.
Hi Anna .. Thankyou for your response. Nice to hear from someone who knows exactly what I’m saying. My doctor and I are working toward getting jakafi on compassionate grounds because here in ontario Canada it comes at a cost of $8,500.00 to $10,000.00 per month and last time I checked the medical insurance companies cover about 20% if at all ..it’s extremely complicated, it’s a drug that would have to be approved all round but again not an easy and possibly not an affordable process. So jakafi is almost impossible to access here. Where are you located and what are your costs if you don’t mind me asking?
I am in Scotland and it costs me nothing - I feel for everyone who cannot obtain it and know I am lucky, My haematologist said it was all about quality of life and mine is so much better now.Good luck and best wishes
Ok yes … it is offered out there. My hem is now going to try one more thing to add to my long list and then he will be able to fight to get it for me on compassionate grounds. 🤞🏼🤞🏼 thanks Anna !
I sympathise so much but unable to offer to much advice other than repeat what others have said about ruxoltinib, when i was diagnosed i suffered itching, not as horrendous as what you and others have, but when i went on rux it disappeared and has never returned (So far).
My sister who also has an MPN suffers awful itching and cannot shower, she is the same if she did would be screaming and crying, anyone who has any solutions I would be so keen to pass them on to her.
I did read a warm bath with a teaspoon of bicarbonate soda but no idea, if that helps, i had suggested to my sister but i think she is at the stage she just darent.
I would have said excercise but fully understand the obstacles for this and why its not possible.
Hi Paul thanks for your understanding and as I mentioned on this forum before , Rux is not easily available here in Canada … out of pocket cost starts at about $8,000.00 per month for 5mg, insurance company covers a percentage only if “authorized” and it would take the group premiums up to an unaffordable expense also. I do have an MPN specialist but again in Canada its extremely hard to get the drug. If the province were to give it on compassionate grounds there would have to be an extremely strong case and even then there is absolutely no guarantee. It’s awful here in Canada as far as getting that drug… we have a good health program but this is not part of that “good” program.
And I have gotten to where your sister is .. I would not dare try a warm bath in any way shape or form .. just the thought has me freaked out.
I just don’t understand how the large Pharmas don’t see this drug as necessary in the treatment of PV and it’s symptoms.
So sorry Keiks to hear of your distress with PV symptoms - especially the terrible itching. I progressed from PV to MF and was put on Jakavi and the itching disappeared within a few weeks. It also helped to reduce the size of my spleen and so my appetite improved again.I hope you can access this medication. My experience with it seems to be general. Perhaps if you are not being treated by an MPN specialist you might consider finding one. I know of other PV patients who are on Jakavi . Good luck. I hope you get help and relief soon.
Hi Keiks, I 100% understand what you are saying and you have described it so well, I sometimes struggle to explain the itch which is so dominating I don't even get started on the night sweats, insomnia, etc. I have just finished a course of photo therapy which works for me but 2 weeks having finished it's starting up again. But for 3 months itch free. There have been times when the thought of having this for the rest of my life fills me with despair. Like you I want to do normal things and I don't want to live my life in pyjamas.I am really feeling for you, and I don't know about you but it's like only other MPNers understand.
Venting out frustration from the disease like this ( when no-one else around can understand) is the first medicine to feel better ... Good that we have a MPN family here .. lightheadness, sweating and itching are common symptoms of PV , I got rid off them soon I started hydroxy. Wish you find the treatment you need soon.
Glad your able to vent can't offer any pearls of wisdom, I am in the UK so I couldn't imagine how frustrating your battle for meds must be, hopefully you will successful soon and find relief... Take care .
Hi Keiks and everybody,I am in the UK and have been denied rux on the same grounds as Keiks in that it is too expensive and I haven't got MF or am of child bearing age, am 69. It is really upsetting that there is a drug that would probably help us but it's unobtainable. The MPN specialist I saw wrote in his report to my haemo that I was coping by using strategies, think he means not washing, changing my clothes under a blanket and taking up to 4 fexofenadine a day when recommended dose is 1. But he did suggest the Mithridate trial and I have put myself forward for it in which I shall have a 50% chance of being put on rux. I have received the patient information sheet (PIS) and seeing the doc who's running the trial at my local hospital on 09 September.
Whether I decide to participate or not, I just hope this trial proves to the powers that be that if rux alleviates PV symptoms it should be offered to all.
Washing: Don't shower! I have same problem with extreme itching. Minimise water contact by having classic "sponge wash" of the key bits! Can go for months like this if not in a hot climate.It made a big difference to me....Nothing else will work I can tell you.
Hi Innessant .. that’s exactly what I do …. Sponge key bits! ☹️Can’t do the sponge wash on arms legs torso because you probably know that rubbing the skin even with cream sets off the hellfire!!! Oh I wish you relief !!!
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Mild small vessel disease and ET
started Besremi but worried about autoimmune diseases.
Pegylated Interferon...starting soon
