Pegasus and hematocrit spike

[Cityreach]

Hi just wondering if anyone else has experienced this. I started peg 2 months ago 45mg every 2 weeks all seemed to go well HCT and platlets lowered, platlets were never majorly high were around 480 I have HCT target of 43 after 2 sets of bloods Guys seemed happy so far, 3 weeks ago HCT 41.9 platlets 385 had blood test yesterday and had spike of HCT to 46.5 in just 3 weeks it has not been this high in over a year hence had VS yesterday with consultant not really knowing why the increase and seemed as shocked as me, nothing has changed was well hydrated hoping its a blip if that is possible has anyone had this spike before platlets yesterday was 344 haemoglobin 141 white cell 7.4 red cell count 5.99 RDW is 22, should I be worried and is there anything I should be asking, it was decided nothing to change but another blood test on 2 weeks

[ainslie]

As a general rule most haems won’t assume anything from one blood count, they say follow the trend so best not to worry until next test at least.

[Cityreach in reply to ainslie]

Thanks Ainslie

[Manouche]

Very common . You shouldn’t worry. I had the same problem. Your haem will adjust the dose/frequency, if necessary in a couple of weeks. This is all about hematopoietic tuning. It frequently takes months to find the right tuning.

[Cityreach in reply to Manouche]

Thanks Manouche

[Hopetohelp]

Mine went from .48 to .51 in first 2 months of taking peg and then went back to .48. Maybe takes a little while to settle down

[Cityreach in reply to Hopetohelp]

Great thanks for that Hopetohelp

[monarch5000]

Relax. Pegasys is a slow, years to decades long journey. RBC, HGB, HCT, WBC & RDW may initially go up instead of down. You may need occassional phlebotomies for many more months, possibly even a few years. Symptoms of PV like itching after showers may take 1-3 years to fully resolve.

[Cityreach in reply to monarch5000]

Thanks Monarch5000 I was hoping it would help with itching but I still itch and now the weather is about to change too I find the itching more intense in the coming months for some strange reason the warmer months it is much milder

[Roxanne22 in reply to Cityreach]

Hi Cityreach - I hope that I may be able to help with the itch - assuming that like me it tends to strike after bathing/showers? so I have found that the following are of interest and help:

high levels of minerals/limescale areas hit me worse, it has crossed my mind about installing a water softener as I live in a medium high area, when visit family in hard water area, its more severe (?)

So, to help this I take before bathing a homeopathic pill of hystamine, 12C (which is the 'concentration' of the dose) I obtain this from my homeopath and as far as I am aware its a specialist item ie not readily avail at a chemist or health food shop - if you need my stockists details I can arrange for you, she posts it to me, about £12 per bottle, but well worth the relief. Dont even question how does it work, just trust me - I also use it for sea swimming

Another tip - apply organic body oil before bathing, or showering - I know, counter intuitive as we tend to do after - but apply before, and then bathe - dont have the water too hot either - more like slightly above body temp is best

Be careful obv not to slip, and its a bit messy but you will have lovely supple skin and no itch - or very very little.

I also add that do not use regular toiletries - use organic natural products only, still beautiful luxurious creams, oils, body washes, shampoos etc but not with the nasty chemical types (sulphates, parabens etc) There are a whole load of reasons not to use these anyhow beside itching but not to go on about that now; again if I slip on the protocol with a gifted product or travelling away - my word, I am going crazy at the itch - So..... I wish you well and enjoy your improved bathing experiences to pamper you as you truly deserve! Sarah x

[Cityreach in reply to Roxanne22]

Hi Sarah thankyou for the info. I do take fexofenadine daily already and although I guess it helps to some degree but it has never taken it fully away and then theres the dread each day are you going to itch how severe is the itch how long will you itch for etc. I do live in a hard water area therefore I am happy to try your suggestions and the homepathic pill if you don't mind could you send me the name of your stockist please and i will give them a try please, thanks so much, have lovely weekend Jill xx

[Roxanne22 in reply to Cityreach]

Of course Jill, interesting about the hard water - I feel that this is surely a factor too. Anyway Kirstin Bruges is my homeopath and her email is [e-mail] - mention me as a link to her specialism you may also find it helpful to browse her website on her alternative healing perspective - kirstinbrugeshomeopathy.com she speaks a lot of unresolved trauma caused inflammation in the body. Good luck Jill and be interested to hear your feedback in due course - Sarah x

[Cityreach in reply to Roxanne22]

Thanks so much Sarah xx

[Looolooo]

Pegasys is like a tanker ship turning. Have Venesections while it's getting ready to turn and wait for the straight line to normal counts. In fact it can overshoot. I'm down from weekly 90mcg to 10 day mcg. It's a slow but effective beast.

[Cityreach in reply to Looolooo]

Thanks for the reassurance

[Exeter21]

Don’t worry the MPN & Haemotology will sort it . It’s taken a year of different dosing for me on Peg to get it controlled but if my platelets are coming down slowly every other reading improves eventually in my case. Julia 👍

[Cityreach in reply to Exeter21]

Thanks Julia have good weekend

[Exeter21]

thnx & don’t worry 👍

[russkatt]

I am surprised no one has commented on your dosage. First I think you meant 45MCGS, not MGS. Taking such a low dose and doing it every 2 weeks (PEG is weekly) I would not expect it to have any effect on your counts. I started on 45MCGS weekly and it was not effective, but it gave me time to adjust my tolerance to the drug. I gradually increase over several months to now taking 90MCGS which seems to be working for me.

I really think you need to consider the fact that you are taking the lowest dose and cutting it in half by taking it only twice a month. Was there a specific reason you doctor prescribed that dosage?

[Cityreach in reply to russkatt]

Hi Russatt, I guess the low dose is to get your body used to the drug with as less side effects as possible, they always told me every 2 weeks to start and a low dose, I was quite reluctant to start as I was well and didn't want to feel worse with side effects from medication eventually they wanted me to start due to age, I came round to trying it and with the first 4 doses hospital was pleased with results said it seemed to be going well HCT and platlets lowered then this 5th dose is when HCT spiked

[russkatt in reply to Cityreach]

I am all for taking the lowest effective dose as possible. My doctor wanted to start me at 90mcgs a week and from reading here what others have done I told him I would like to start with 45 and work up 15mcgs a month to get to the 90 he wanted me to start with.

I had come off of HU and had several side effects. I am hoping that I will not have to go above 90mcgs, but so far I am still getting a monthly Phlebotomy.

I hope you can get some positive results from your current dosage, but if not I would recommend increasing very slowly. I think the only side effect I am experiencing now is afternoon fatigue, otherwise I seem to be tolerating Peg fairly well. BTW, I did not notice any increase in the side effects from 45mcgs to 90mcgs. Wish you the best!

[Cityreach in reply to russkatt]

Thankyou that is good to hear you suffered no increased side effects, a monthly VS still seems quite often I hope things settle for you soon, that is my plan if need be slowly slowly and add a VS for now if needed just let me body adjust, I wish you the best on your journey ahead too , have a good weekend

[russkatt in reply to Cityreach]

I will keep you posted on how things go at the higher dose. My overall goal is to take the lowest possible dose without the need for any VS. I was told that Peg can take months to really show a positive effect, so I am hopeful that my next blood work has stabilized. It is a slow process and requires patience.

[Cityreach in reply to russkatt]

Wishing you all the best