Romiplastim : Hi all had to come of... - ITP Support Assoc...

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Romiplastim

Bowiemolly
Bowiemolly
β€’10 Replies

Hi all had to come of Revolade because of hair loss and thinning. Of it just over a week, platelets down to 18, felt rough. Had my first injection of Romiplastim on Friday, no side effects so far. Any feed back from any one ? Felt great on Revolade just hair problem and aching hips. Look forward to hearing πŸ™πŸ™πŸ™

10 Replies
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Hi - I started on Romiplostin in November - I had some serious joint and muscle pain in my arms and hands but they said this was linked to Romiplostin - it’s now all settled down and I have had a great response - I only have to inject every 3 weeks and my platelets are 155 - after injecting every week they went up to 555 - I find it very easy and touch wood no more pain. Good luck with it.

Bowiemolly
Bowiemolly in reply to Sachmo16

Thankyou ! Reassuring !

Sachmo16
Sachmo16 in reply to Bowiemolly

Sorry I meant they said the pain was not linked to Romiplostin!

Hi I have been on Revolade since 22nd December 2020 and not had hair loss or thinning yet. I just have dry mouth and throat especially at night and can't sleep great on it but my count has now gone up to 115 which is highest it has been on this journey. How long were you on it before you noticed problems with your hair x

Only on it about 6 weeks, worked well for me count up to 85. Every time I washed my hair got 2 handfuls. Am very gentle with it now and are using CBD shampoo etc. Settled down now. Have fine hair so was a SHOCK. X Had first injection πŸ’‰ of Romiplastim Friday, very few side effects.

I have been ok that way so that is lucky as have fine hair as well. Hope your new treatment works well for you.

Jon1
Jon1 in reply to Bowiemolly

Hi there

My wife had the same problems with thinning hair and hair loss with n-plate for a year,than after that her hair started growing back.

She still on N-plate now no problems with the hair,but it's not rising the platelets above 30.

goldylockz1
goldylockz1 in reply to Jon1

Hi there from freezing cold Canada...same thing here. Nplate and hair loss, also no real improvement in numbers. Tend to hover around 30. Does your wife have hip pain as well ?

I was on NPlate injections for about 3 years before switching to Revolade. My count was stable whilst on NPlate but only around 40. I had hardly any side effects and was happy to take it. I changed cos it would have been difficult to store the injections at a low enough temperature when travelling - I should have mentioned I was self injecting - and as I was due to go to the US for over 2 weeks it would have been impossible. I have been taking Revolade for 4 years now, count is steadily rising - 184 last month - with minor side effects. Mainly slight hair loss and acid reflux occasionally. However I was interested to see that you have aching hips as I have been experiencing this for some time now! Will have to mention this to my consultant next time. Hope you continue improving.

My hair falls out with revolade. Been on it for months. Consultant agreed to reduce the dose and there has been a slight improvement. He wants to check my platelets are staying stable before he would consider changing my medication - they seem to be, sitting around 69. He says anything over 50 is satisfactory for me. Think I will stick with Revolade for now. Used to the routine and if I switched to Romiplastim I worry I might dip.

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