Effects worth side effects?

[harry98]

I started hydroxyurea on 2/14. within a couple of days my throat started to feel scratchy and kept getting more pronounced. By the 24th I had a very sore throat. stopped taking it on the 26th. I seem to be susceptible to side effects. there must be a better way to reduce my platelet count. 10 years ago I was put on Lipitor and in 3months I was disabled with severe muscle and joint atrophy, took almost a year to basically recover. I don't like side effects....

[stillkicking]

Hi Harry,

I'm sorry to read about your trouble with Lipitor, it sounds like you had an awful time. I see that rhabdomyolysis (the death of muscle fibre) is listed as a rare side effect of Lipitor, and I assume you must have had something like that.

You don't mention what MPN you have or how high your platelet count is. There seems to be some difference in thinking between haematologists as to when to reduce platelet count, and what drugs to use to achieve this. If you cannot take hydroxyurea for some reason, then you really need to speak to your haematologist and see if there is an alternative drug that you can use, or if the dosage of hydroxy can be adjusted to make things more tolerable for you.

Best Wishes,

Peter

[Ebot]

Talk to your haem team as a matter of urgency. I too had an increasingly sore throat when I started taking Hydroxy but mine has subsided. Given the amount of flu, colds etc around right now I didn’t know whether it was the drugs, a virus or maybe a combination. Hydroxy is only one approach. Having resisted drug treatment up to now (and my heam team being on the same page) I’ve now reached the point where I’m more anxious about the consequences of NOT taking the drugs than dealing with any potential side effects. Your sore throat may not be related or it might be manageable. I understand your anxieties given your previous experience but there is every chance you will not have a similar experience with these drugs. Do chat with your clinicians.

[JuneKnox]

Hi there, I take hydroxycarbamide and have done for about one year. At the moment, I'm on a reduced dose due to my low wbc and my platelets are now reduced. To be honest, I have lots of side effects with my drugs. I feel pretty fatigued most of the time but I'm just happy to be "still standing". I try my utmost to live a normal life but I do have to wrap myself in cotton wool just to get through the week. I feel your pain - but I have no solution for you other than speak to your doctor if you think there could be a better treatments.

God bless and take care. June Knox

[JSKly]

Hi Harry. We are subject to all the usual ills whether we take hydroxy or not. when we start a new drug it's normal to be watching for side effects but things that come up may have nothing to do with the drug. I was on hydroxy for over 12 years. I learned to trust it and it served me well. I had the usual colds. Throats etc it I couldn't attribute them to the drug. Hang in. Go well.

[Bippers]

Hello Harry - Hydroxurea seems to have many side effects. I took the drug from 2004 thru 2012 for ET and an 800+ platelet count. I started with a daily 500mg dosage. By 2012, dosage was down to twice a week. During that period I developed a peanut allergy with several bouts of anaphylaxis. It took about 12 months after I stopping Hydroxurea for the peanut allergy to go away completely.

I was also managing a very technical project during the 2009 - 2012 period. I didn't realize how foggy my thinking had become. Within six months of stopping Hydroxuria, my thinking improved greatly and the project completed successfully.

I think Hydroxuria has different side effects depending on a person's physical makeup. Your side effects should be discussed with your hematologist. Perhaps a different medicine will suit you better.

The best of luck to you.....Bippers

[harry98 in reply to Bippers]

thanks to everyone who replied to my post. I will consider your thoughts