[Anonymous]

Hi all

I’m starting to learn how to use this new site, although not straight forward for me.

Anyway, my second post of the day.

I’ve just been reading through some of your posts, and came across a thread that included thrombosis, and discussed Clexane and RIVAROXABAN.

As some of you may or may not remember, I’m blind as well as having MM. When I previously had to have clexane injections, I had problems with doing the injections myself, as sometimes I would get too nervous just at the point of pushing the needle in, so would give in, and ask my Wife to do it instead.

I didn’t like my Wife doing them, as sometimes they would really hurt, which was no fault of hers, but just the way it was.

I also had problems doing them myself, because I couldn’t see where I was already bruised, so couldn’t avoid that area.

My consultant has always told me that there isn’t any alternative to clexane, apart from aspirin, which I already take due to having a TIA just prior to being diagnosed with MM a few years ago.

Is there any reason why RIVAROXABAN hasn’t been discussed with me? Why don’t others use it instead of those blumin injections? Do they have other side effects that are worse than clexane? Is RIVAROXABAN more expensive or something\/

Any thoughts welcome.

Terry

[eveParticipant]

Hi Terry

My husband has been on Claxane off and on for a number of years,and seeing the consultant after he had a blockage in the artery,and had to up had to up his dose from 40 to 100,he made a remark about being fed up being a pin cushion!!!
The consultant said he could have RIVAROXABAN but had to make sure he took it daily as it worked only for 24 hours,I asked all the usual questions,has it been tried and tested? How do you measure if it is working ? How long has it been around ?. Slim was having problems with low platelets but still had a very large blockage in his Artery ????. So you can see my concern.

Any way,he started on RIVAROXABAN , went down with two sepsis infections in a month,his platelets were non existent,although he had GCFS injections,plus bloods and platelets,I did wonder if the RIVAROXABAN had not helped,the first thing the did was take him off RIVAROXABAN and Chemo, I did ask an important question at this time!!!! Had RIVAROXABAN ever been used on people who like Slim were under going intensive treatment with chemo who had low platelets????,no one could tell me?????.
I know Slim is unusual in its rare for someone who has low platelets to have a blockage in an Artery from hip to knee!!!,plus they now say his body is not producing them!!!!
6 months have passed since all of this,he is now being treated with Chemo,with platelet support,no Claxane,no Revaroxaban,holding his own,with platelets now in double figures,might not sound much,but a vast improvement.
You must use your own judgement on medication,as we all know these chemo,s bring there own problems without adding more to the mix,.

This is just Slims experience!!! And we may never know how or why the platelets became non existent,he has improved and continues to do so on Chemo. Eve

[Anonymous]

Hi all

As usual, thanks for your responses.

I had an appointment today which was supposed to be the start of my Revlimid cycles. Anyway, that all went awful, but I’ll leave that for now.

Whilst there, I asked the consultant about Rivaroxaban. He informed me that it isn’t licensed to to be used with the family of drugs that include Revlimid. He said it is suitable for use with Velcade, but as I’m just stopping Velcade and switching to Revlimid, it’s no good for me.

Has anybody else heard a similar thing? Has anyone been prescribed Rivaroxaban while they were taking Revlimid?

I obviously want to take the treatment that it going to be most effective, but I sometimes can’t help being suspicious. Sometimes, it’s in the way that information is delivered, and sometimes it just doesn’t feel right when a consultant isn’t sticking to the point. 

Now comes the daily injections, lol, oh what joy!

Thanks

Terry

[eveParticipant]

Hi Terry

Well you have answered my question!!!!

Slim was on CDR,when he was prescribed RIVAROXABAN ,he only had it for 2 months,and 2 cycles each time not being able to complete the cycle because,of sepsis and very low blood readings,platelets and neuts hit rock bottom.( looking back an awful time ).
He had to stop chemo completely,and after 2 BMB and months of waiting for bloods to rise,was eventually told they could do no more,had a second opinion and has started treatment again..

Have you any information on why it’s not recommended with Revilimid !!!
Stick to injections!!!! Eve

[Anonymous]

Hi Eve

No, I’ve no idea, and the consultant that I saw today wasn’t very fourthcoming either. He wasn’t very sure of himself when he was telling me about it, so I didn’t push him too hard. I’ve since been googling it, but can’t find anything useful to read about it.

I’ll be putting the Revlimid off for a few days, which is to give myself a chance to get over this chest infection that I got this week.

Terry

[PerkymiteParticipant]

My Doctor actually suggested Rivaroxaban to me as an alternative but it was vetoed by the Consultant. The consultant said that it was to do with internal bleeding. If you had an internal bleed Clexane could be treated easily but Rivaroxsaban could not.

hope this helps

Kindest regards – vasbyte

David.

[eveParticipant]

Hi Terry and David

Thank you both for the information,it’s worth making a note of!!,because of the fact of it only lasting 24 hrs in the body,so it,s important that it is taken everyday at the same time,you assume there is no build up of the drug in the body.
Why should it be ok with Velcade but not Revilimid ?????
I also think people assume if you have low platelets you can not have a DVT or artery blockage,which is wrong,Slims had a couple of platelet rashes as well,they also have to be checked out just in case they are infections.
Touch wood not had to go to A&E since last summer,whayyyyyyy it’s great spending hours in A&E before ward is awful they do not even have a drinking tap in A&E,they keep a jug of water in there own fridge.so you have to buy water.different at other hospital.

Thanks again for info. Eve

[Author]

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