Medication Changed

[Chelle_]

Medication has changed today from Inter-A to Hydrox.....platelets and HB both dropped on Inter-A....not sure how I am feeling. Get my emotions in check and then feel like they have been jumbled up again!! I can't find the words to explain how I feel.....I also feel guilty because I take my emotions out on my family......I need some time out!!

[Twinkly]

Hi chelle...take time to adjust,the important thing to remember is there are lots of us all feeling strange apart from our former " normal " selves ,take it one day at a time ,make a conscious effort to improve the situation by eating and drinking as healthy as you can give yourself the very best chance. Wash it away with water and juice,don't get sad ,you really are not on your own. Xx. Twinkly.

[softail]

Finding the words to say to your family is so hard. I find I am cross, angry & snappy to them. The nicer they are to me. But they don't understand either, they are also at a loss at what to say to you, so take a bit of time out for yourself as Twinkly suggests. Good luck.

[Ashto70]

Hi Chelle

Sorry to hear of your medication change. I suppose you would have been somewhat prepared for the possibility that you might have to change to Hydroxyurea at some point? No matter. It must still be saddening and somewhat frustrating for you. I'm sure the sportswoman within will find a way to deal with your anguish and heightened emotions.

If the switch from Interferon is due to side-effects on your platelets, could this be looked at with a more positive spin, since it is the medication that is the problem as opposed to a progress of the disease per se? I hope this is indeed the case. Either way, the switch - although emotionally deflating - must be for a good and valid reason and that's the key thing to remember.

I'm sure your family will understand how difficult this is for you at the moment. One of the good things about most families is they are ever present, and supportive, even when times are at their worst. You will all overcome this hurdle in time. I agree you need to take a little time out for yourself to come to terms with the new situation and status quo.

In my thoughts and prayers.

Craig

[Chelle_]

Nothing like virtual friends to bring you to tears! Thanks guys....no seriously thank you. The fact that you take the time out to respond to me and say such kind words mean a lot. You are right though all of you, I need a break so using my work time wisely and booking a mini break for me myself and I.....Unfortunately the MPN is coming along too but somethings are unavoidable!!

Thank you a million times!

Chelle

[light in reply to Chelle_]

Way t o go, shake it off and push forward. I am praying for you, and know that things will get better. That is the way for us MPN's, at least for now.

I am just about to change my medication from Hydrox to Interferon Peg and I am somewhat anxious about it. I totally know where you are at the moment.

Wishing you well

[dave71 in reply to light]

4 months ago, my 16 Year old daughter changed from Hydrox to Interferon Peg (due to the risk of using hydrox long term, increases the risk of birth defects) 1st dose was fine no symptoms, 2nd higher dose she had slight flu symptoms, after that nothing. She is tolerating it fine no issues.

[light in reply to dave71]

That is very good news. Wishing you well

[linds]

Chelle, you are very good at explaining how I feel at the moment - my next visit to haem is on Tuesday and I don't look forward to it at all because of the changes I believe there will be and I try so hard to be positive. What I do know is, we are lucky to have meds that seem to make huge differences because not so long ago this was not the case. It is hard for family to understand, I find it so hard to explain really how I feel and end up saying 'Oh, I am fine thankyou', when I feel jolly horrid. I reminisce back to a time when PRV was not my constant companion and then I think for goodness sake things could be much worse - I still have my marbles and I can walk and look forward to the good news that a cure is on the horizon which I am sure will happen soon. Enjoy your break when you take it and know that we are all with you in spirit - feeling just like you! Best wishes always x

[TrickyDicky]

I haven't got any support I feel I can give in addition to that already given. I hope you do get a break and enjoy it. It seems to me to be quite normal to feel upset. The fact that you feel guilty about it shows you also care about those close to you.

[Hidden]

Yep, I just echo what all these good people advocate, Chelle, particularly the self care.....eat the good stuff, find an exercise you enjoy (getting a dog was the best move I made as I HAVE to walk daily but that's my thing anyway!), sleep when you need to (you don't have to explain yourself either-I just say I'm off for a Saga snooze if anyone asks when I'm at home! and finally, drink loads of water. Have faith and hope that a cure may just be around the corner but in the meantime, just seize the day! This is an excellent support here too so don't be afraid to use it if you're having a wobbly day! Mandy