Hi began Hydroxycarbamide 8 weeks ago and have an increasingly sore mouth,shin pains and sore fingers and hands.Is there anyone who has also experienced these symptoms.
Thank you
Hi began Hydroxycarbamide 8 weeks ago and have an increasingly sore mouth,shin pains and sore fingers and hands.Is there anyone who has also experienced these symptoms.
Thank you
I had a sore mouth which was quite bad at times. I stopped having acidic foods such as tomatoes. This kept it at bay, but it wasn't as bad when the dose was reduced. Eventually after juggling the dose for years, my haematologist reduced it permanently and made up the shortfall with Anagrelide.
Thank you for reminding me how acidic foods can be a problem for me. It seems that most of my insights gained over the years about my bodys well being have disappeared with this diagnosis of ET and JAC 2.
A lot of the symptoms do subside after a while ,sometimes they are replaced by new ones,........then they all rotate 😣
I have been on Hydroxy 500mg daily - for 2 years and started getting occasional shin pain in one leg about 6 months ago. It was rare then. The last three weeks I have had it 4 times and. It is usually just in one leg but the other night it was both and kept me awake all night - Panadol does not work. I was worried it was progression of the disease never thought it was the drugs!! My GP sent for tests to eliminate all other possibilities so def is either disease or meds.
My feet get very numb.
What do you take for shin pain?
Hi shin pain uggg mines there most of the time. Massaging them gently can help so does support tights,but for me the best thing is sitting with feet raised on our small side stool also getting enough sleep and rest will help.Regards
Murina
Thanks for that yours sounds awful - I am only getting it every now and again and only at night although notice it more at night as during day am usually racing around so don’t notice. It is just a deep dull ache in shin bones.
Hi, For a couple of years I've experienced tingling fingers that go white then blue and toes when cold, during e exercise and once it twice when holding a hot drink. They think it could be the meds and currently under investigation.I sometimes experience dull, heavy and uncomfortable spine ache mostly at night. It was way worse during the year I was on Interferon.
Hi, I too have the same symptoms as you, I have been assured that it is Raynaulds Syndrome and not connected to Hydroxycarbamide etc. Who knows? I also have severe deep seated itching on my arms particularly in the summer. Hope you have a good Christmas, I am home alone as in tier 4.