introduction

[Battl]

Hi fellow hearties

Just to introduce myself and to say how much I have found this forum very informative over past few months.

Sadly I just need to grumble today - no response required as I know so many have far worse to contend with.

My story is similar to so many, female who had my symptoms dismissed as “ anxiety “ . Until admitted straight from work with stage 4 heart failure, ( now stage 1) I was a nurse with 45 yrs experience), eventually diagnosed with dilated cardiomyopathy and heart failure EJ 40%. Discharged with little information 2 yrs ago, waited 5-6 mths for results from cardiac MRI, only had 2 telephone calls from consultant since discharge ( not seen face to face) . No rehab and saw a heart failure nurse x 2 only because I asked repeatedly . She discharged when statin started to cause liver problems back to care of GP . To get follow up echos since discharge I phoned to request, otherwise unlikely to get one.

I did have good support from GP, who requested urgent liver scan when statins caused problems and 6 mth blood tests. However the receptionist now insists I see locum GPs for reviews of statins due to leg pain -I now feel dumped by both secondary and primary care. I worked full time in NHS but it’s very different to receive “ care”

I discovered this site and pumping marvellous by “ accident “ thank goodness for both sites.

[Lowerfield_no_more]

Your GP practice should be offering you professional support to investigate alternative statins for you to try if you are experiencing possible statin side effects of muscle and joint pain. Whether that comes from your regular GP or a locum the outcome should be the same. If you do not feel you are receiving the level of support you deserve you should complain in writing to the practice manager. There are several statins to try and if you are found to be statin intolerant due to side effects there is other lipid management medication available. If you are resident in England look up Statin Intolerance Pathway which defines what you GP should be doing for you. Hope this helps.

[Battl in reply to Lowerfield_no_more]

ah thank you .. I was unaware of statin intolerance pathway … I will look it up

[DWizza]

Hi Batti, realky sorry to hear your journey has been so clunky. Absolutely what Lowerfield had said 👍🏻. I’m now on my 3rd statin after experiencing pains/fatigue and cognitive impairment and other side effects. A trial period of stopping artovastatin for a month and I felt great , completed 5 & 10k running goals and felt awesome. Back on a low dose statin now with a view to increasing dose (if needed , got blood test in June ) to a point that I can tolerate and get the desired cholesterol results. I had to really keep on top of my situation and insisted on seeing one particular GP (even if it meant waiting a week or two longer ) that knew my case. It’s awful dealing with strangers every time . Explain everything then that say “And what would you like to do ?” Drives me nuts …

[Coffeelover2]

You should be tried on different statins or strengths. If you can’t take statins, ezetimibe or a PCSK9 inhibitor should be prescribed. Inclisaran is expensive but with your conditions and statin intolerance you should get it. You have to push for rehab - I had to email and phone Cardiac Rehab directly and I complained to the hospital PALs. I have leg pain - make sure they organise a CK level blood test if it carries on.

[Battl]

thank you for the really helpful replies.. I wish I had written before.

I now feel better prepared for my telephone talk to locum GP but will in future insist on speaking to my named GP who knows my history. Also going to phone the consultant on Monday to chase up echo results.

I think got got low and couldn’t see the woods for the trees ..