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 have tried hot showers, cold showers; 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 for this awful condition and it did not help!
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 cry and scream so much !! It’s not “itching”, it’s intense pinching and sometimes with a burning sensation 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... it’s always just sitting under the skin waiting to explode and eventually it does!!!!
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 ???
I’m really sorry to hear about the pain you find yourself in at the moment. Before I was first diagnosed, nearly 2 years ago now, I had a lot of pain, mostly in my feet and hands. It varied from tingling, itching and stabbing through to the most intense burning sensations. Shoes in particular, were excruciating, I really struggled to walk.
I never received any medication specifically for this, but tried a vitamin B12 supplement and found some relief. This surprised my GP though, as he said I wasn’t deficient in B12, so whether that actually helped or not I don’t know. Another thought is that I’ve been a lot better since being on blood thinners. At first I was on enoxaparin/clexane, 180mgs twice a day and then transitioned to 14mgs of warfarin a day. This was all prescribed for the massive blood clotting events that I was suffering, but I haven’t had so much pain since. It’s now more of an occasional intense stabbing pain that often comes a goes really quick, much easier to live with.
I’m not sure any of this will help you, it could have been largely coincidental with me anyway, but I certainly hope you find some relief from the pain very soon, I know how horrible it can be.
Hope you find something that works .... that much itching would drive me crazy! I take a low dosage....600mg Gabapentin works great on my legs tingling numbness and soreness. When I have flare ups of itching I use Gold bond eczema. Even thou I don't have eczema, it calms down the itching. Also their is " Gold bond itch lotion " at walmart online. Never tired it but Gold bond is a brand thats helps me.
Gold Bond Eczema Relief Cream, 2% Colloidal Oatmeal
Hi ChristieLea .... unfortunately the pinching/itching is literally head to toe underneath the skin.... using any kind of creams or lotions just exacerbates it. I have gold bond and every other ant-itch cream I could get my hands on ... I even tried selsun blue in the shower ... wont ever do that again!! I asked about gabapentin because someone on another MPN forum uses it for her pinching/itching but it doesn’t completely help and sometimes she takes so much of it , doesn’t sound like it might work but wanted to find out if anyone else had a good experience with it ...... different methods work differently on everybody. Would you say that gabapentin maybe works on your pinching/itching at some level????
Yes Gabapentin definitely helps. I would toss and turn all night, was so uncomfortable. For a year, I swore that something was biting me. Felt like pin and needles at times. Before the PV diagnoses, my husband thought I had a bug phobia and said nothing was biting his legs 😂😂 The symptoms feel 85% better when I take Gabapentin and I can sleep now🙂 Thou my PV is at the onset of the disease at 46yrs old. Also a low Jak2 gene mutation for now. So the hematologist just has me doing phlebotomies to keep levels correct, especially the HCT. That helps alot too. The main symptoms I have seen online with MPNs & other cancers, is burning, pins and severe itching can be unbearable. Alot of time, the doctors brush it off as something else. Other major cancers and tumors are often overlooked and misdiagnosed for yrs. I would highly suggest you have a specialist check for it all and have nerve testing done. Hopefully you can get better relief for your symptoms.
Thanks for this great response... I will definitely think about gabapentin... great to hear it works for you as well and I do have regular tests done on everything else (organs; abdominal; gastric) so I’m ok but nerve testing sounds like something I should look into. Thanks!!!!!! All the best!
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