Update on appointment

[Jody00]

Hi all

Had my appointment yesterday with another different Dr has there on short on staff was waiting a couple of hours after my blood test to get seen has there was many waiting before me

This Dr said my platelets are well in the normal range now from 2 weeks 3 days ago there are now on 425 but said neutrophils wbc are quite low ,which I've been feeling really cold shivery at times am like okays he ask how was doing a said from last few days I've been getting like a blurry vision just on a morning in my eyes and fluttering in my stomach still getting tingling on off in my feet and hands and wozy and headaches on off which carnt be due to my platelets so the Dr said to me to put my treatment on hold for this week to see how I get on with my symptoms has he said could be a side effect ,then said may have to start me on new treatment if these symptoms doesn't go and with wbc quite low ask me why I've been put in this treatment so I let him know has I don't think he's had time to read threw my information has there was only the Dr om seeing everybody in one day ,so he said to me to come in next Monday to see how am getting on and may or may not start me on a new treatment a know some are in low doses every few weeks or month if my symptoms goes by Monday then maybe lower my dose to every 2 weeks or so with my platelets back in normal range already am just thinking ahead ,will my wbc go back into normal range has its neutrophils not too sure on this at moment with being a different doctor ?

Thankyou guys xx

[hunter5582]

The short staffing problem is certainly a concern. Many doctors, including hematologists, have very little experience with treating MPNs and likewise little experience with Pegasys. Suggest that you arrange to consult with a MPN Specialist before making any major decisions. It is certainly worth discussing a dose reduction as side effects are dose-dependant.

I believe you started on 90mcg. While some start at this level, many start at 45mcg weekly or every-other week. Attached is a NHS protocol for Pegasys use for MPNs and some other information..

nssg.oxford-haematology.org...

chemoexperts.com/peginterfe...

pubmed.ncbi.nlm.nih.gov/327...

We are all different in how we respond. In my case, i responded very well to 45mcg/week Pegasys. It brought my PLT to reference range in a short time. PEG was much easier to tolerate the hydroxy or venesections. Adverse effects were minimal, mostly mild itching/rashes that were controlled by Claritin. I did experience some mild leukopenia but not so low that it was a problem. The goal has been to keep LYMPH > 0.50 and NEUT > 1.00. My WBCs never got below those levels. Note that cytoreductive meds will often decrease the production of all types of blood cells. That can just go with the turf of cytoreduction.

Suggest you ensure that the doctor you are seeing has extensive experience with MPNs and managing patients on Pegasys. This is a more specialized skill set. If you must work with a less experienced doctor, then it is all the more important that you go prepared and aware of what all of your options are. You can also have the doctor reach and and do a consult with one of the MPN Specialists regarding your case if you do not want to do that yourself.

All the best moving forward.

[Jody00 in reply to hunter5582]

Thankyou very much hunter am going read threw them now ,and I will discuss this when I go back up on Monday, just glad I have found this site .

Thankyou again xx

[Jody00 in reply to Jody00]

Hi this is great information hunter,just what to say thankyou again ,has a know now what a need to discuss when a go back Monday has I couldn't get an appointment time on the day has there was no reception on at all either,so I have Gmail cns has she back in tomorrow will give me update then on my appointment time hopefully. Thankyou again xx

[Wyebird]

your doctor sounds very caring. I think he is really looking after you, he is watching your white blood cells. Hence the possibility of changing meds. The uk apparently has a shortage of haematologists.

[MAP44]

Hi Jody00

I am taking pegasys 90mcg. It has worked very well in my case. I am lucky to have an MPN specialist as my hematologist.

For many people a slow and steady dose is enough to bring positive change in their body.

Good luck with your treatment plan. Hope you are feeling very well, very soon. 🥰

[Jody00]

Thankyou guys,my eyes now on a morning started to wear off now ,only latest just under an hour then just felt like tired eyes but nothing major,but it has work and brought my platelets back down,I don't really want to change just yet has I think like hunter and you both say just now need to lower the dose or even just now have it every 2 weeks or what we discuss on Monday when I go up in afternoon bloods doing then to see Dr hour later, has I only get cold shivering on off threw the days,tingling in my feet wozy not has bad has it was before a started treatment,so am suggested just to put me on a lower dose every so often now platelets are now back in the normal range .

Thankyou for your reply xx

[MAP44]

Jody00 when I started pegasys a was told to stay well hydrated everyday ( I tend to drink much more water and other liquids in the morning ) and to take the needle right before bed. Originally I was also told to take a Tylenol for arthritis ( they are stronger and last longer) when I take my needle and another upon waking up the next morning or day if necessary. I was lucky and only had to do that’s for the first few months but not anymore. It did help with the woozy feeling in the morning. I was also experiencing sleepless nights from the medication but that also does not affect my any longer. Slowly your body will adapt to a smaller dose or a great distance between the needles. Hope you are feeling amazing very soon. ❤️

[Jody00]

Thankyou for Yr reply,yes it made me drink alot more water than I normally do which Is a gurd thing like u say a smaller dose now should be okays has my platelets gone back into normal range , it did make my sleep alot better has I was constantly waking up threw nights for water and toilet run lol,but think Dr waiting to on see if neuropils wbc go bk up bit which probably think there well,since I've not had injection this week am waking up again threw the nights so am missing my sleep again, just still at moment my body gets really cold especially my hands and feet and tiredness so am thinking same just a lower dose no need to change has u say I've only been on this 4 weeks so it takes time to get used to and maybe just to lower the dose now every 2 weeks or so.

Thankyou xx