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Laurence HermanParticipant
Hallo Bob
My MDS is with Ringsideoblasts under 5%
Ive now had approx 10 shots and my HB was at 11,0 and is now at 10,8
My doc. increased the dosage to 100mg every 3 weeks but touch wood it seems to still be working
i have not had any other treatments since Jan.2021.
the only problem are the side effects which range from Bone pains,Headaches, upset stomach,
and various others aches and pains
but up till now im happy with the results of Luspatercept and must accept the side effectsLaurence HermanParticipantHi
Ive had MDs for 9 years have had 4 tranfusions 2020
My Dr.decided to start Lustpatercept this year and i have had 3 shot (1 every 3 weeks)
my Hb was down to 8,3 and went to 10,1 after the first shot then it went to 10,6
had my 3 shot just a week ago and hoping for more positive results.
My lowest Hb was 6,5 before tranfustions.Laurence HermanParticipantHallo LeAnn,
Ive been reading your first post Dec.13 2015 hope you are still well
i have exactly the same condition as you Low Risk MDS Refractory Anemia with Ringed sideroblasts.
I have up till now not needed any Blood Transfusions but my Hb count was down to 8,6 at the last check up
so possibly my Dr will start this treatment. Apart from feeling tired, being pale and having my Puls sounding in my ears up till now i have needed no treatment
I was wanting to ask how you are now a few years after your first posts and are you still getting blood
every 4 -5 weeks has your MDS developed or has it remained the same.
Hope to hear from you soon
LaurenceLaurence HermanParticipantHi Tam
Thanks for your quick reply
Ive started watching my diet recently and up till now have not notice any improvements
Ive cut out coffee, Black Tea and all alcohol (which was the odd glas of wine)
my last blood results were HB 8,6 worse than 6 months before at 9,7
I think my diet could be the cause of this drop so i will try to eat a similar diet you have had success
with and see what happens
thanks againLaurence HermanParticipantHallo Tam
I was not able to read your strict diet plan and tried with the search bar with “salmon”no Luck
can post your diet plan
I also have a low red blood count and have been trying different foodstuffs which could help me
with my mds
Thanks in advance -
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