Bad day

[Kerri2]

Bad couple of days not feeling well. Feel like I am being poisoned feel like stopping all meds.

[sjdard]

Hi Kerri, no how you're feeling, I did stop my med, but recent appointment with doc was told to start taking them again as platelet increased to over 950. Been back on hydroxicarbamide for a week now, feeling really bad, exactly like you, being poisoned. I got no energy, feeling sick, headaches and got no get up and go. Doctor booked me in for a ferrinject next week as my iron levels are low, do hope that help. hope you feel better soon.

[tracey13 in reply to sjdard]

My husbands ferritin levels are so low, his consultant told him he can't have any injections to up his iron. He's got pv jak2 positive.

[sjdard in reply to tracey13]

I'm not having an injection it's an infusion by drip. My ferritin levels have half within a year and my doc don't want it to go any lower.

[Kat666]

Hi 👋 Kerry sometimes that's how I feel but I've found reflexolidgy helps me also I walk walking 🚶 makes me feel alive and helps my head hope things get better for you soon x

[Mazcd Partner MPNVoice]

Hi Kerri, sorry to hear that you are having a bad time at the moment, however, it is not advisable to stop your medication, you must speak to your haematologist, he/she may be able to change your dose or discuss alternative medications with you. Hope you feel better soon. Maz

[harleydavidson]

Hi Kerri

I think we all feel like this from time to time, I know for me when the fatigue is at its worst, I just cry and feel like I exist but don't live. Normally these spells are short lived and things do get better. You are not alone, we are here for you and wish you better. Mel x

[lizzziep]

We all have days like this! It should pass but if you still don't feel well contact your haematologist and ask for advice, you might need a change of medication.

Hope you feel better soon.

Best wishes

Lizzie

[socrates_8]

Hey Kerri2...

I believe many of us here empathise with how you feel.

I am 'Dark Green' by my own personal philosophy of life. I detest ALL artificial chemicals, and trying to stay alive with this diagnosis can be a challenge at times... I love all things organic!

I was diagnosed in May 2016 w/ CALR Post ET (prefibrotic) Myelofibrosis (MF).

I could NOT tolerate the Hydroxyurea (HU), and after c. 8 weeks, I asked to try another and moved to injections every two days, (w/ Interferon).

All of the cytotoxic therapies have there own suite of symptoms, but personally, I prefer the Interferon to the HU. I do not like HU at all !!!

Truth is, I do not like any of them at all. Before this diagnosis, (during a standard medical prior to be posted abroad for work), I barely ever took a panadol.

My university studies were largely all about Sustainability, and everything to do with taking these drugs goes against my grain (severely).

I try to remain philosophical, and it is harder on some days than others...

But I just keep trying to tell myself that this is all a part of my new adventure... I have a childlike quality where conceiving of adventures is involved...

It is all quite a fascination really, and made more so when I reiterate that I was actually trying to influence Local Government against using harmful toxic chemicals (Glyphosates - RoundUp), in the parks and gardens (reserves etc) when I became diagnosed myself... Ironic is it not?

I personally found the HU so terrible due to the constant mental fogginess that I eventually made the switch, and I am also now trying to find other solutions as the Interferon causes Pruritus (itching) also...

I have already experienced a TIA (minor brain stroke) in August 2015. That was quite an interesting experience and perhaps prophetic of things to come should I not take the best care of myself that I am able etc...

I would really hate to be rendered completely physically disabled...

Hence, I try to manage my new adventure as best I may...

Life for me, has always been about learning and informing myself, and I thrive by understanding (BUT... I must also learn to be more patient with myself...)

Very best wishes

Steve

(Sydney)

[IlGod67 in reply to socrates_8]

I agree wholeheartedly with your post..

[Aime]

So sorry you feel so bad but I know how you are feeling and send you e hugs to try to help even a little bit. You will get through this dark time but as Maz has said please don't stop meds without seeing your Haem. You need help from a medic because you are feeling so bad and so low. Please don't disregard an anti anxiety or anti depressant if the docs think it will help you. I did and struggled on, getting worse. Since going on to sertraline, an anti anxiety tablet, I am a different person and coping with my illness and my bad days so much better.

If you like reading and self help, Google mood gym and see what you think. In the meantime, please as others have said, don't think you're alone, because you are not! EEE hugs sent Aime xx😺

[Superwoman]

Hello Kerri

Know how you feel, there are days when I think I cannot even get out of bed, but I do. I make sure that I exercise every morning which makes me feel a lot better. Try drinking more water to make sure you flush your body daily that does help, make sure you eat plenty of fruit and veg as well.

Is there anyway you can speak with your Chemo/Haemotology nurse before stopping the tablets, maybe she can give you some advise even an appointment to see your Doctor. As Maz says, don't stop the tablets without speaking to someone.

We are all here for you so moan away, we are all ready to try to help in some way.

Chin up and big hugs

Jean x

[SuET2017]

Hi Kerri, I totally understand. When I started taking meds (anagrelide) about 2 months ago I felt so unwell (nausea, palpitations for a couple of hours after taking and a general feeling of ???) and every day I felt like I was taking poison. I was ready to stop taking and just take my chances and was going to talk to my Haemotologist at the next appointment - I felt overwhelmed by it. Then the side effects suddenly stopped. I still get an odd unwell day, but am much better and as my platelet level drops the fatigue is improving, in fact almost gone, and I only get normal tiredness from a busy lifestyle now. Take care Sue