Revolade and clotting?: Anyone... - ITP Support Assoc...

ITP Support Association

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Revolade and clotting?

eagle2
eagle2

Anyone experienced this side effect? Now I will be treated with Fragmin to dissolve the clotting in the legs. So going from Zero platelets to responding to good on Revolade and now got clotting. Is this possible to balance?

5 Replies

Hi eagle2 have been on revolade and it stopped working now on romoplostim and have similar experience count keeps going to high then crashing on reduced dose how high did. Your count go I wll know on Thursday if current dose is working have they reduced your dose

My platlets went up to 600 on Revolade 50 mg pr day. Now I take 25 mg Revolade 3 days pr week and I am mostly stabel around 100. But have drops below 10 when I have infections so now I try out increasing the dose when I have a cold .... and I hope this will help to prevent drops.

Regards

eagle2
eagle2 in reply to torgarb

Hello torgarb thank you for the comment. How often do you check your platlets level? How did you get to the 25 mg three days a week?

Second question, The other days when you are not taking Revolade do you stick to their diet plan, like these 4 hour before 4 hour after food restrictions, or you just eat what you feel like?

All the best

torgarb
torgarb in reply to eagle2

I started on Revolade2011. Started with 50 mg pr day and took tests 1 or 2 times pr week, when platlets went high I stopped and began on a lower level when platlets were less than 100 again. After 4 or 5 month we had found a dose that most of the time cept me stabel around 70 - 100. (At that time I also had my summervacation and had contact with a very nice hea

matologist on Crete 3 weeks)

Now I had drops in february and in march, but level quiqly up using IVIG and Revolade a littel higher dose. I have been on 25 mg 3 days pr week 2 years, and only now I will increase til 4 times pr week. I have had this condition since 1969. For me Revoalade was a way to get away from Steroids. I was very good at taking bloodtest often when changing medication to Revolade because I was scared of clothingproblems, but after I was stabel in platlets I have not been a good patient and now I take tests when I am scared of drops, and usualy I get signs, like the smal blu spots and nosebleeding og bleeding from bruching teeth. So then I sometimes wait a bit and dont take test for 6 to 8 weeks ( my doctor does not like that). What they told me was no milk before og after medication. And same goes for that, I was good in the beginning and now I sometimes forget and have some milk in coffe or cheese on my sandwitch. I have not notised problems when not beeing so strict with milkproducts.

Problems with Revolade has been headace and fatuige. I have been working more than 100% untill two years ago when I started on Revolade. Now I work 60%, that is full time 3 dayes pr week and I dont use Revolade the dayes I work because its dificult to have full consentration when tiered or with headace. My hematologist told me last month that I have to be more carefull and stay at home and rest and recover whwn symptoms of colds. and one problem has been that i often just work and work untill I am worn down and counts are low. Coldsymptomes and stress is not a good thing when you have ITP. (When I was at university years ago, I often had drops before big ecsams.)

But all together I try to live and tell myself I am a healthy and strong person.... and then I sometimes drag out times when it comes to tests.

It sounds bad that you have to take Fragmin.... I hope you find right dose of Revolade very soon.

Good luck

and all the best

Regards.

Tora from Bergen

hi been on revolade 3 weeks now until today , have been told to stop it by my hematologist as i have been experiencing severe headaches and joint pain, the pains woke me up in the night , platelets were only increasing slowley so will be given a 4/6 week course of ritumuxamab from tuesday ,at least i know no side effects ,have had it before 3 yrs ago and it put me in remission for 2 years so worth a try again

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