Hi hope you are all well. Just a wee question please. I started Hydrea and Allopurinal 2 weeks ago. I take all 3 in the evening ( started of taking Allopurinal in the morning but it was making me feel a bit out of sorts) but since taking all 3 in the evening I have been feeling Ok, apart from sleepy after I take them. However yesterday and today I feel achy pretty much everywhere but not like flu achy. I feel well, I just feel like I've done a work out at the gym ( which I haven't 🙄) is this something anyone has experienced? I don't want to blame every ache or pain on the meds but I don't want to ignore it either.
Thank you
Mandy
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mjfin72
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It could be a number of things. Do you have access to a clinical nurse specialist to discuss this with?
When I first started hydrea to bring my platelets down, it lowered my rbc too. This made me feel a bit low on energy etc. It all rectified itself after awhile though. Not sure how allopurinol might affect you.
Hi Mary. I think there is a nurse I can speak to. My consultant has a clinic every Thursday so if no better by tomorrow I'll ring and try to speak to him or a nurse.
I had those aches and pains for a very long time even before I was diagnosed and given Hydroxycarbamide, I can't say they are any worse after taking the meds. So, for me anyway, I can't blame that. It seems this condition can be unique in weird ways for each of us.
I do Pilates and circuit training every week, can't say it helps with that dull ache but I do feel better for it. When my aches become too annoying I take CBD oil under my tongue, that usually gives me a break from it. I did speak to my Haematologist prior to taking it and asked if he would take it himself. His reply was no, but only because the production of it was not regulated as yet in this country. It is becoming more and more common now for it to be taken to manage all sorts of things and I don't think it will be long before production will be regulated, the demand from the public being what it is.
Hi Mica11. Thankyou for replying. It is easy to blame every niggle on our conditions when their could be so many other reasons . I am still feeling very achy today and my lower back is very sore. I am going to ring the clinic to see if I can speak to the specialist nurse.
There seems to be a few have mentioned CBD oil on this forum. Not something I know anything about but good to know it offers some relief.
Hope you get some help from the nurse Mandy. I was blaming all my aches and pains on suddenly age making itself known which was quite a shock as I was usually very fit and active. It was almost a relief to find out there was a reason for it.
I have been taking th CBD oil..but also Dragon Balm which is CBD in balm formula..deep tissue analgesic which really works for my hands and fingers to losses them up..I’d you can obtain..gray stuff
I often have that sort of pain (i'm on Pegasys - 45mg-every third week). It's like after the harvest--or gym, as you say. And it's definitely NOT the flu pains !!!
I've tried to "decipher" it. It seem to help making some physical hard work. So the pain could indicate lack of oxygen or lactic acid, but how can I tell ?
I get some sort of breathless feeling in connection with the pain.
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feeling low
Tolerant to Hydrea, giving Pegasys another try....
Hydrea
Feeling low and fed up
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