I'm really pleased to say that after 5 weeks on Anagrelide instead of HU that my toes are healing really well, the open wounds have disappeared. They are still a bright red/purple colour and still quite tender but I can wear a shoe (with socks) without screaming in pain. I did think I would be wearing open toed wellies or sandals through the winter but hopefully I'll be able to wear normal shoes/boots!! My knees are still VERY painful but now I am back swimming I am hoping that they will start to feel better.
I am waiting for news of whether I can have nerve block injections in my knees, I do need both knees replacing but am scared of the operation with having ET, and my platelets weren't stable.. Also my local hospital has a bad reputation regarding knee/hip replacements!! (One doctor who was doing them wasn't actually a doctor!)
I've spent the last 4 or 5 months sitting around as my feet have been too painful to walk, which meant my knees seized up, but I'm gradually getting moving again. I have groceries delivered as I still can't walk round a supermarket or large shops because of the knee pain. (thank goodness for internet shopping!)
Anyway I am in a better state of health than many others so I shouldn't moan! (but I will)
Happy Autumn everybody!
Written by
lizzziep
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That's really good news about your foot and I hope it continues to improve and it's great that you can now swim and also hope that helps with the knees xx
Great news you shared lizzziep, , I'm really pleased you've turned a corner. . I know the impact of sitting around for long periods of inactivity. . May you go from strength to strength over the coming weeks, those supermarkets are beckoning! !
I've got used to the shopping being delivered now, sometimes it's only £1, not worth the hassle of getting the car out and queuing at the tills! I've missed meeting up with friends and browsing round the clothes shops though. We've been to the caravan quite a few times and all I've done is sit outside the awning, it made a change of view though. I was like the Queen with everyone having to visit me, although my husband thought wearing the crown was going too far!
Hope you are improving slow and steady. One of my friends has just had stem cell treatment for Multiple Myeloma, fortunately she is recovering well, quite slowly but we have promised to go out and eat cheesecake when we are both up and about properly (apparently it has magical properties and can cure many things!)
Pleased to read your toes are mending....mine were nothing like as dreadful as yours,but thank goodness I can now get cotton shoes on.You must have had a rotten time,'no foot ,no horse ' we horsy people say,it goes for humans too !!very best to you,,pleased also to see J R is on line again too,good to know people like us do mend!!Sally
Hi, sounds positive, and a good moan is therapeutic
How have you found the Anagrelide in terms of side effects? I have been on it for 6 weeks now (just diagnosed with ET platelet level was +1000 - not sure what it is now? I go back to Haematologist on Monday for follow up) but have had side effects such as nausea, which has reduced somewhat, and palpitations and 'tremors' (internal shivering??), which happens about an hour after I have taken it and lasts for 1-2 hours. Also I have been getting lots of bruising - some significant with swelling, I hadn't noticed this before taking Anagrelide.
Being new to all this I am not sure what is ET and what is the medication?
The side effects are manageable however and my fatigue has reduced significantly, which is fantastic, but tingling fingers and toes, and joint/bone pains are still apparent.
I get minor palpitations about 1 - 2 hours after taking Anagrelide, I had an ECG before starting on it so they have something to refer to if it gets worse. So far (touch wood) it's not too bad. I also have had a few internal tremors, short lived fortunately. I can't say I feel less fatigued, still yawning all day, and I get a lot of joint pain from arthritis so hard to tell what is what with that. No nausea or bruising either. I do bruise easily because of the aspirin I also take.
Great news Lizzie. Hope they are completely healed real soon. Had to admit I choked on my toast about the doctor operating who wasn't. Keep up the great work xx
It's scary that the hospital could employ someone who had never been near a medical school, and he'd done a lot of botched operations before any questions were asked.
Great news Lizzie. Glad you have got a remedy. Onwards and upwards as they say.
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