New treatment

[Jody00]

Hi ,started My new treatment yesterday 90mg pegasys interferon alpha injection in my stomach still take 1 aspirin aday,my platelets count just below 900 at moment says will take a,few weeks for it to work got few symptoms nothing major so far,going see me once a week for now to take bloods and see Dr see how I get on a could need more or less or if this one doesn't work need to change but hopefully it will work and bring my platelets down in next few weeks when if starts to work on me.still waiting on appointment with neurologist for the paraesthesia in hands and feet to see if it's peripheral neuropathy or its my condition.

Thankyou

Best wishes

[Barbiebreath]

Hope it works and you tolerate it well!

[Jody00 in reply to Barbiebreath]

Thankyou kindly Xx

[Barbiebreath in reply to Jody00]

Let us know how it goes. 💕

[Jody00 in reply to Barbiebreath]

Do feeling tiredness at moment ,body aches, headaches ,shivering but this be probably has only started new treatment yesterday first dose at moment and yes I will do .thankyou. xx

[hunter5582]

Hope you find the PEG works well for you and is tolerable. If there is an issue with tolerance, many start on 45mcg and titrate up as their body adjusts.

Wishing you all the best on the next stage of your journey.

[Jody00]

Thankyou very much hunter.Xx

[ainslie in reply to Jody00]

yes starting at 90 is a bit unusual these days, most start at 45

[Jody00]

Yes started me om 90 for now but said I could need more or less but going see how I get on and check up once a week for bloods and to see how am going and to let them know any symptoms if get them like bad ,at moment think I just got quite threw, few hours after my first shot but started to feel bit better than what I did yesterday Xx

[Exeter21 in reply to Jody00]

peg is not quick & usually only monthly blood tests . Is your Dr being instructed by an MPN expert as 90 is not a starting dose for this usually .

[Cat1001954]

good luck x

[monarch5000]

Sorry to hear your doc is causing you to suffer tiredness, body aches, headaches and shivering with a large 90 mcg starting dose. I started at 45, then went to 67, then to 90 over a 2 month period.

[Jennytheb]

Hi, hope this works for you, at least you know you are being looked after and the medics will be able to track your numbers to your advantage.

[Notmyusername]

Hi Jody, hope you feel better soon and that it works well for you. I'm starting the same in the next couple of days.

[Mustang50]

Good luck! Hope it works really well for you, for me took a little while to settle but now it has platelets are settled and so are the symptoms, give it chance unless an extreme reaction.

[Exeter21]

usually start on 45 to get body used to it so if you have any bad reactions could be dose related. I have had mine reduced as had bad headaches after 2 weeks on it . Good luck 👍

[Mazcd Partner MPNVoice]

hi Jody, good luck with it, hope all goes well. Best wishes, Maz

[Hopetohelp]

Hope all goes well for you. Peg can be slow acting for some and fast for others so don’t be disappointed if there aren’t dramatic reductions in first few weeks

[Jody00]

Hi thankyou everyone for your reply, think those symptoms I had all in one started few hours after had new treatment, not has bad now still get a little on tired side few headaches feel sickly but nothing major just going take time to adjust to my body has its my first first new treatment but if I find its too much il let haematologist know so there can lower my dose has my next appointment is next Friday for bloods doing and see Dr to see how am getting on.

Thankyou again Xx

[azaelea]

Good luck Jody. Hope your reactions soon settle down and blood tests are satisfactory soon. Will be interested to hear how it goes.

[DiveGoddess]

Good Morning Jody00,

Congratulations! I just started Besremi on the 9th. My platelets have come down some prior to starting. Up in 800’s now low 700’s. Still baby aspirin. Curios to start this journey and will follow your posts. Best of Luck!

[Jody00]

Thanku u both il keep updatedXx

[Jody00]

Thanku u both il keep updatedXx

[MAP44]

Hi Jody00

I have been on Pegasys 9 months and all bloods have been in check for 5 months. Brain fog is all gone too. No Phlebotomy needed for last 6 months and hopefully ever again. ( I have PV). I am sure you will feel like a new person very soon. Goodluck to you. I had started at 90 with no issues so I moved up after a few months to 135 and then 180. Back down at 90 but pretty sure I will be reduced again in Feb at appointment.

Remember to take it in the evening before bed and drink lots of water throughout your day. 🍻. Best wishes on your new journey.

[Jody00]

Thankyou very much for your reply and yes I will be taking it before a go to bed ,it has been made me drink lots of water already more then what I normally drink, but soon will settle down and best wishes to u too Xx

[Plavers]

excellent hope it all goes well

[Steve_Essex]

hi Jody,

Do you mind me asking what triggered the new approach of treating with interferon.. I’ve been told I’ll continue on aspirin only until platelets go over 1500 or if my symptoms change significantly which warrants a review

Best of luck with your new treatment!

Steve

[Jody00]

Hi ,yes my symptoms I had few months started with paraesthesia in my feet and hands with lightheaded and headaches has my platelets count got to 800ish essential thromocythaemia jak-2 positive score ipset 2 (intermediate)My haematologist had a meeting with MDT to discuss me there after decide to start me on my new treatment.

Thanku

All the best xx