Anyone taking Tredaptive?

[sweary2012]

Hi, I am a new member. My husband, father-in-law (died in December), brother-in-law and 2 of my 3 sons all have FH. My 5 and 11 year old are on simvastatin 10mg and pravastatin 20mg respectively and their cholesterol sits at about 6.5. My husband is 36 and is currently taking Tredaptive, Avorastatin and the questron (sp?) powders. He received a letter from his GP to say he was to stop the Tredaptive immediately as it has been withdrawn from the market. Trouble is, it has really helped his levels come down as now he is getting older, his doctor was adding more medication to keep it down. He has not been offered a replacement drug. I am worried that it will now start to rise again. He has to have another blood test in 3 months to see what his cholesterol is and they will then go from there. Has anyone else been told the same thing about Tredaptive? Thank you, I am glad I found this as I think we're going to find it useful! Claire x

[Aliwally]

Hi Sweary 2012,

I am not an expert and like Traci I had never heard of this drug until I googled it.

It's a combination of niacin and another drug that stops the flushing isn't it. The site I looked up says it has been withdrawn because it's no better at lowering cholesterol than statins alone, and in addition it can cause some serious side effects.

Does your husband attend a lipid clinic? Maybe an increase in the atorvastatin would have the same effect, but he needs a medical opinion on it.

Nice to have you on this forum

[sweary2012]

Hi thanks for your replies .

Yes, my children are seen annually at Great Ormond St for review and also locally annually for blood tests. My youngest who is 5, only started statins when he turned 5 but he has the added complication of being in remission for liver cancer. I won't lie and say I'm not concerned of the potential side-effects of statins at such a young age but the doctor said that the earlier he starts them, the less damage will be done. My eldest who has just turned 12, started on simvastatin when we first thought to get him tested, when he was 7. They didn't agree with him and his CK raised so they changed him on to pravastatin. We have a check up at GOSH next Tuesday.

My husband found that the combination of Tredaptive, Atorvastatin and Questron powders brought his levels down to a 'normal' level. His lipid consultant decided that while it was being maintained, he could just see the GP for bloods every 6 months (his vit D level is low too) but I presume that now he has stopped the Tredaptive, he will be re-referred to Dr Wang as we are expecting his levels to start to rise and it may well be that he needs to increase the atorvastatin, as you say.

I would definitely love to be in contact with other FH families to get advice and compare notes!!

Thanks

Claire x

[Aliwally]

Sorry to hear about your son's medical problems.

I don't know if you are a Facebook fan (I'm not particularly !) but there is a good FH Discussion Group on there. Many are parents with FH children and members come from all over the world. It is an open group so I often dip in to read the comments, although I'm not a member and I don't have FH.

[sweary2012]

Thanks for your reply What is the name of the group as I'd like to have a look

[Aliwally]

Glad you made it to the FH Group....hope it helps you. Thanks for the direct link Traci.