Experiences with

Polycythaemia vera

Hello, I appreciate there is probably not a definitive answer to my question but I was wondering if there could be a link between platelet donation and subsequent PV diagnosis. I gave platelets some years ago and on one occasion when I gave blood, I was told there was an anomaly and to get a blood

Hi, I was diagnosed out of the blue following a routine full blood count back in 2019 with MPN ET, which has since been amended to PV with ET. A complete shock as I had no symptoms! I’m on Hydroxycarbamide and low dose Aspirin which brought bloods back into a ‘normal’ range and recent blood test showed

Things progressed quite quickly following this & after numerous tests I was diagnosed with Polycythaemia Vera.

as a treatment option for certain patients with polycythaemia vera (A response to European KOLs by P-E's research team) https://onlinelibrary.wiley.com/doi/10.1111/bjh.19998 I think this new information is useful and that it would be a good idea to share them with our fellow members.

Hi everybody, I'm Ciaran & I have been very recently diagnosed Polycythaemia Vera.

They discuss this plot wherein CHR is being lost but VAF still goes down hence "decoupled" and the title "Molecular remission uncoupled with complete haematological response in polycythaemia vera treatment with ropeginterferon alfa‐2b" The pts were all HU intolerant.

My query is how can the iron deficiency be treated with a diagnosis of Vera when iron supplements are contra indicated.

I have read Kate Gilbert's PMR survival guide (2 edition) - easy to read and really useful. In it she talks about aloe vera juice. Has anyone on here tried it? I’m trying everything that’s been suggested may help, so have ordered two options, the one mentioned in the book and a cheaper version on Amazon

Hello everyong, I'm in the 5th month of treatment inj everyday with cofactor's but my stomach is still very weak. I have better days like yesterday but the day before wow bad. then bowels as well cramping so bad on Tuesday then yesterday was better. today it's trying to cramp up again. I've tried the

He has Polycythaemia Vera He has coped really well with Rux but has had to come off owing to large amount of skin cancers over past 12months. Pruritus has been a big issue but Rux really was the answer.

I'm new here but would like to know if anyone has similar symptoms... I have been diagnosed with probable IBS (D but sometimes C) by my GP (exclusion diagnosis after various tests). My main symptom is discomfort in the upper right abdomen which is just about always present. Occasionally it is more painful

Hi Guys, New to this forum but have 7 years tackling & experimenting with nutrition for Hashimotos. With a keen background in nutrition I was determined to address it with this and avoid any thyroid drug interaction if possible. My antibodies were as high as 3500 at worst and are now 528 and dropping

Thank you for the previous tips. I tried them but still had an angry (larger!) reaction this week, but it went down much rapidly and hasn’t itched or bruised much. Progress! Sorry for so many questions for a relatively trivial thing but please may I ask - do you put the needle in part way or right

I started getting these about 6 months ago and read something about them coming from cats and soil or dirt but anyway I figured I would try aloe Vera straight from the plant and it healed it in 3 days I hope this helps a lot of people going through these skin plugs that wont heal

Hi fellow suffers. I was diagnoised with IC 3 years ago and have chronic pelvic pain. I also have vulvodynia and IBS. I have tried numerous medications and bladder instillations which have not worked. I have recently started Elmiron but too early to say if it's helping yet. I follow a strict IC diet

While vacationing last winter, I developed an unbearable itch on my feet. They felt like they were on fire and I was itching so hard I was afraid I’d tear the skin off. I grabbed some aloe vera (for sunburn) and rubbed it on my feet. Instant relief. Certainly easier than jumping in the shower! Hope

Hi all way back in 1997 i suffered with severe IBS D i tried antispasmodics from my gp aloe vera juice but it was when i started eating bananas it vanished fast forward 2017 i developed diverticulitis and severe constipation and pain my abdomen was huge luckily it was uncomplicated i started eating wholemeal

It provides, on page 53: “Grouped application consisting of: Extension of indication to include treatment of Polycythaemia Vera (PV) and Essential thrombocytopenia (ET) for PEGASYS, based on published data of clinical studies conducted in support of the efficacy and safety of Pegasys for the treatment

someone forwarded me information on the above subject. Pegasys is mostly used off label for MPN, but it is prescribed and reimbursed for MPN in many countries. What would be the motivation for Pharma& to start this procedure in this stage? And has the application been accepted, or is there information

I did I applied two times coconut and aloe Vera gel In a day , but wrinkles are there but it did improve a bit but my concern is where it is not a serious problem , I had rough masturbation that time it was fully wrinkled and shinny white cracks and skin not so easy but I am not sure still what time