statns

[terryblueeyes]

PLAN A..when a person has tryed all the statins from his doctor and his doctor knows he or she have problems taking them.. the last statin they took liptor, made him or she have bad thoughts in killing them selfs.. now off statins they feel a million dollers.. whats PLAN B for someone who needs to lower there cholestrol but cant though statins..... im really intrested in what you have to say..

[DakCB-UK]

I feel statins shouldn't be plan A. Plan A should be diet (search for Ultimate Cholesterol Lowering Plan). If that doesn't do enough (and a few of us think it might max out at 25% in FH sufferers), try bile sequestrants (Colestid). They're crude but side-effects seem to be confined to the digestive-related processes. Might still not do enough.

Statins should probably be plan C at the moment. After that, I'm unsure whether it should be bergamot fruit (natural statin-like effect but maybe fewer or different intolerances - not much evidence yet) or Ezetimibe (probably the orthodox option) or Niacin (mixed reports on that). After all that, there's apheresis or betting your life against the lipid hypothesis... good luck!

[Aliwally]

i am now having problems with my 4th statin, low dose pravastatin and I have come to the conclusion that I am statin intolerant (although I have heard some doctors deny that this exists).

I am willing to try other drugs..maybe the cruder ones as Dak puts it will be better for me as they don't have systemic effects.

Apheresis I would say is an absolute last resort as it is on a par with kidney dialysis, totally invasive and totally disruptive to everyday life as it is only available in specialist centres.

[georgiaemily in reply to Aliwally]

hi my dr has changed my statin numerous times due to having sever arm,shoulder and now leg pain, i insisted they sent blood test, which came back proving the statin is the problem for causing me the pains. i was so relieved

[Hidden in reply to georgiaemily]

Hi, interested in the blood test, what is it that proves statins responsible for pains also what type of blood test is it please. How come you had to insist, surely it should be routine if statins causing pains. What do you do now.

[ElleC]

Hi, I think as previously said that plan a should have been a balanced discussion if all your options so you didn't plough through all the statins to be left wondering if there were any other options. That aside, certainly a balance of diet alongside some of the other medications may help, I gues it depends on your levels, whether you have significant preexisting CAD and as such how aggressive you need to be about treatment.

I think the majority of other options are here, the obvious thing would be to discuss these with your GP, failing that ask for referral to a specialist. Diet alongside some of the other bile sequestrant type drugs can be effective in some patients, like I say out really depends on your situations and what sort of reduction you need to achieve.

apheresis is an option even for heterozygous FH sufferers (it's mostly used in homozygous patients) if they are not tolerant of statins or have significant progressive CAD. I would like to reassure you that it is not (as aliwally suggested) totally disruptive of everyday life as unlike dialysis patients who are unfortunate enough to have to attend at least 3 times weekly for 4-5 hour, apheresis is once a week or even once a fortnight and lasts 2-3 hours max.

Just wanted to reassure you about this rather than scare monger. Certainly apheresis would not be plan b but might be something that were discussed x should plan b not work as such

Hope that helps.

[Aliwally]

Thanks for putting me right about the apheresis. I don't have any personal experience ( as you may have guessed!). I have just read through the experiences of some of the people on the Facebook FH group.

[ElleC in reply to Aliwally]

Hi Aliwally, sorry if I came across a tad brusque! I've been having apheresis (i'm a homozygous fh sufferer) 11 years now and it's amazingly effective and I feel really lucky to recieve the treatment. I have it on a dialysis unit and as such see the renal patients regularly and get to chat to them, hence I can really appreciate how non invasive my treatment is relative to others.

True it's not an ideal scenario having apheresis but having had a triple CABG at 21 I am appreciative of how lucky I am to be able to control my cholesterol so well and since then i've (fingers crossed) been angina free and have had no further episodes. So I guess in conclusion, it's not ideal but it's better than the alternatives, we are lucky to live in an age where medicine has advanced so far to be able to offer this.

[2squirrels]

I believe Plan A should be diet. The power of suggestion has a part to play, when you start on any new medication particularly you are looking for side affects and could easily notice aches and pains you have always had and think they are new.

[mags3003]

I have not noticed anyone here advising on exercise, this together with diet can be more beneficial than relying on medication.

I was on a very high dose of statin and since following an exercise routine at the gym, together with diet change I am no longer needing statins.

[DakCB-UK in reply to mags3003]

At least for me, the effect of exercise seems to max out once I do the recommended 150 minutes a week, a little every day. Beyond that, the main effect seems to be elevated CK levels... well, that and the general good feeling from being out and about more.

[patch14]

Diet, exercise and perhaps a new GP?

[Aliwally]

Hi ElleC,

Really interesting to hear about apheresis. Can I ask if you started on it because you were intolerant to statins, or were your levels just too high for the drugs to bring it down.

[ElleC]

Hi Aliwally,

I was started on apheresis after discovery of 95% stenosis in 3 of my coronary arteries - at this time I was on medication but my cholesterol was not well controlled. I had a triple CABG at this time and have been on apheresis for the past 12 years.

Alongside the apheresis I am also on ongoing medication which is currently rosuvastatin 20mg, ezetomibe alongside others like aspirin and omacor.

So as you see i'm on a combination of both, at diagnosis at 15 I was running at levels of 18mmol/L. With medication my levels came down to about 10-12.

Since i'e ben on apheresis my levels have been running at around 7 pre treatment and 2 post treatment, so as you can see the results are pretty amazing in that respect.

As I understand it NICE guidleines for apheresis treatment are all Homozygous FH sufferers, heterozygous sufferers that cannot tolerate statins and people with lipid dyscrasias with significant and progressive coronary artery disease, so I guess I fitted 2 of those categories!

Hope that helps?!

[Aliwally]

Yes thanks! I did not realise there is also a lot of information on the HEART UK website under health information.

It says that there are currently about 60 people undergoing this treatment in 7 centres in England..very interesting reading.