Has anyone any help with muscle wastage. Severely allergic to statins , it was discovered through blood test showing enzymes .
Have felt quite weakened through this and not up to doing BHF exercises. Have been walking my dog but it’s not enough somehow I need to build the muscles up and nit sure how to achieve this
I assume you are no longer on statins. How long were you on them for?
I lost about 15kg pre/post BKA (below knee amputation) as a result of a serious infection. Most seemed to be muscle. Regaining muscle as one gets older is extremely difficult. To me the only answer seems to be a low carb (120 - 130gm per day) Mediterranean diet with plenty of lean protein combined with exercise. Exercise bands and dumb bells are helpful. Good luck!
The only way to build up muscle is via exercise. I have not looked at the BHF one's but I am sure they will start very gently, it is tough to begin with but you are still relatively young and just need to start gently but regularly. If you are able to walk the dog then just go further and progressively more quickly, or go out on your own if he/she can't keep up! Get yourself a step monitor, anything just to introduce something to focus on and aim to do just a little bit more each time, you can do it, it just needs determination.
Thank you lateguitarist. Relatively young(70 this year)Yes it’s definitely tough. I was in those statins 18 months. Lost bags of weight 2 stone but it was an odd weight loss ( disappearing bum and horrid bat wings)
I hadn’t realised what was wrong, how can you, heart meds make you feel rough quite often.
Anyway I will try abd do as you say.
Thanks for replying
Are you sure it is the statins that are the problem? My mother and I suffered with this problem in our mid sixties, but we weren't on stations.
What was the cause of yours? I hope it’s better .I can only go on my doctor stopping the statin immediately she discovered enzymes in my muscles. She said if it had got any worse I would have been admitted.
I had had a bad reaction to atorvastatin in the beginning and was changed to rosuvastatin which turned out no better than the other.
I've lost loads of weight and muscle. My legs are like empty skin and I have real difficulty getting around but had never heard ofhe possibility of statins causing it . I assumed I was just not mobile enough. I wonder if I should ask for he blood test. If I do what exactly is it called?
It’s something like “ kinase” I’ve forgotten. But just ask to be tested for statin allergy and enzymes in muscles
Hi Finndog
I would seek further tests from your GP or even a referral to Neurology with regards this. I'm not sure the statins cause muscle wastage but certainly the inactivity from not being able to due to being weakened is probably more the cause.
Statins can cause Myositis which normally improves after time. In my case it didn't and I have 6 monthly blood tests to monitor my CK levels as ultimately over time high CK levels can cause kidney problems
I suspect the enzymes you talk about are the ones picked up in a CK blood test.
CK stands for creatine kinase, an enzyme that leaks out of damaged muscle. When elevated CK levels are found in a blood sample, it usually means muscle is being destroyed by some abnormal process. This in turn can you leave you weakened, sore and fatigued.
The positive is you recognise your muscles are weak and want to do something about it. Keep that thought process and do whatever exercise you can on a little and often basis. My GP reminds me often any exercise is better than none, not only for the body but just as importantly the mind.
What was your CK number and how long ago was it done?
ATB in whatever exercise you can do, listen to your body and don't overdo it. Better to stop and be able to go the next day than not at all.
Let us know how you get on.
Ck number was 525 . Thank you for your kind words. I dint think my number was too bad as they would have admitted me.
A doctor once said: How much exercise should you be doing? However much you are doing, you should be doing more.
Yes I expect that it true( unfortunately)
The chance would be a fine thing....😀
Excuse my ignorance but what does ATB stand for?
Sorry to hear about your severe muscle damage caused by statin inhibitors which is all too common..when my acl in my knee snapped after enduring brain fog and severe muscle wastage after six months of statin usage I stopped statins and researched the problem.. I wont bore you with the detail..doctors are government employees bound to follow guidelines but prescribing statins and then ignoring the severe side effects is clearly negligent and contravenes their duty of care… your cholesterol levels at your age may well be normal but if you want to have well balanced lipids then light exercise a mediterranean diet and regular sleep is far safer than enduring statin side effects which are a serious physiological dysfunction… no real scientist would ignore this…you may be able to repair the muscle damage over time .. gentle swimming if you can manage it plus light exercise…I used Ubiquinol 200gm tablet daily and noticed improvements after a few weeks .. improvements continued and after two years I am now fairly fit inspite of CAD progressing… 74 yrs old. My doctor is a close friend and after sharing my research was grateful for evidence of the pathogenesis of the disease and the failure of statins to address its affects but he still has to follow primitive guidelines. Be careful and humour the doctors … do not lecture them on basic physiology as you may …like me …still need the odd stent occasionally. Good luck and my sincere best wishes for a steady recovery..
Thank you fir your reply I do hope you are getting better
Hi Finndog. Try the cardiac rehabilitation. It’s tailored to you. It’s not general. You are given a timed walking test first (just walking no exertion. They then assess what you can and shouldn’t do. Please try them I found them very beneficial and was glad I went. I now have a mobility scooter. My husband takes it downhill to the river and drive it back uphill while he walks quickly behind me. Excellent exercise for both of us. I’m 70 and he is 78.
Hi Maisie I missed the cardiac rehab it was in lockdown when I was offered it so all I got was bhf online exercise videos
Try to do those but only do what you can manage. Some of them are very mild. Keep trying your cardiac nurses. Our surgeries are getting into a routine where I live. Check with your GP. Also check your local leisure centres. They run programs if you self refer. They last 12 weeks and are free.
Thank you I’ll look into that
I'm already disabled with extreme pain and spinal problems but woudl never have turned them down after a heart attack. My cholesterol was too high and I needed the protection they also give to the heart. Statins are not just about lowering cholesterol. I couldn't take the first ones so they were changed but I@d just assumed my muscle loss was because of my immobility. If Fy
nndog can tell me what eh blood test was I will ask for it.
The East Cheshire NHS trust post cardio op workout on utube has been my salvation after lockdown took away the nhs one I attended . They monitor you and you don’t have to do the full workout at first . However I find this the nearest to the nhs workout I attended. It took away a lot of the stress in my shoulders especially
Thank you pollypuss. I’ll look into that
Hi,I had a similar experience to cornflakes 1789 and would endorse his comments.
Do you own research on statins, Facebook stopped our statins, is very helpful.
Taken me 2 years to get muscle mass back and feel normal.
A friend told me today that doctors get £11 every time they put someone on statins.
I’d rather a shorter liveable life than be on them.
I think they should be banned along with cigarettes and believe in years to come they may be looked upon as a big medical cock up.
Strong words and I am not medically trained, just my own experience. More people need to speak out.
Hi sparkybigshot I’ve got a feeling you’re right
Hi Fynndog,,
I have had a similar experience to you. 17 years ago I took 80mg Atorvastatin for 18months and constantly complained of muscle aches/weakness and cramps in the solaris muscle, but I was also very ill with coranory heart disease and on a cocktail of meds waiting for space for an operation, the latter being the focus of the medical attention, until I was finally hospitalised and found to have a CK of 9,500 and a diagnosis of Rhabdomyolysis. Some of the effects disappeared very quickly after stopping the statin, such as the solaris pain, and it did take a while to get my body back to strength, especially bearing in mind that I was hospitalised, due to my pre existing heartcondition, for many weeks. I used walking, gradually building my stamina and took up tai chi and swimming. I don't think I suffered any long term damage though constant heart and circulation problems, steming from other causes, have meant that I've never been a potential marathon runner, but I have had an active job and home life.
After a few years off statins I did start on 20mg of Rosuvostatin which acts on a different biological pathway to Atorostatin. Higher than that, I start getting aches. As has been said elsewhere, beside lowering cholesterol statins stabilize the plaque in the vessels and I certainly need that. 17 years on I'm still taking them with no problems. I would advise you think carefully about rejecting statins altogether, unless there is no option, as there are many different ones and because you have definately had a reaction you will be carefully monitored and you may find one that suits you. As my natural cholesterol is very high I also take Ezetimibe and Repatha. Good luck with your journey back to full strength. You will get there with patience and pesitance.
Hi Astronomyrules. I’ve only just found your reply. Your CK was very very high. You are fortunate that Rhabdomyolysis didn’t cause more problems.The doctors seem to focus on one thing only regardless of other problems.
I started in Atorvastatin for 6 months . HA occurred after stopping Atorvastin two weeks previously . After stents I was changed to Rosuvastatin , I told cardiologist that I was allergic to statins he said you are no allergic , you just couldn’t take one type., that I would be ok on Rosuvastatin.
I did not realise the weakness that was worsening was due to that statin until I had a CK blood test. Thank goodness it was detected early.
They have now prescribed Estemibe. I have not started it yet , I needed a break from new meds I felt very depleted so asked for 3 months break , which I’ve got. I will do a repeat cholesterol test to see if my levels have increased due to no statins and take it from there.
It would be nice to think you were being monitored but honestly we are not. If I were not reading up and trying to understand things I would still be on the statin and probably would have Rhabidomyolosis.
The changes that have been made on my road to recovery are all self made , it’s been impossible to see doctor. I had to write to Cardiologist to get noticed.
I asked why after a year since HA I’ve not had a review. I did not know who my cardiologist was.
She replied to me by phoning me. She said “ you do not have a cardiologist , the NHS does not work like that. It it self guided. Ie. You do not feel well , you contact your doctor and you will get re-referred.
So it seems that until you fall apart you will get no assistance.!!! By the time you get to see the doctor to be re- referred who knows what will have happened.
I never dreamed this country would be in a state like this . Our health care is truly third world until you actually get through the hospital gates , then by some magic they seem to get things sorted. But that’s the problem getting through those gates.
Hi Fynndog,
I agree that it is wise to gain knowledge about your condition and its treatment as long as the information comes from reliable sources such as the BHF and other such organisations. I also agree that the NHS is brilliant at emergency care, but much less successful when dealing with follow up, prevention and the earlier stages of disease. I believe this to be due not to a lack of will, but to a total lack of resources. In my area there is a vey good and conscientious cardiologist, but he is the only one of two in an area of predominantly elderly people with endless waiting lists and patients at the point of emergency must always take priority. The next cardiologist and any hospital with a stenting suite is 56 miles away and the only hospital in the county that can perform OHS and other heart surgery is 60+ miles in the other direction. Until the NHS is properly resourced I can't see things changing. We owe it to ourselves, and to the NHS, to stay as healthy as we can; to press our GP for a referral when we first believe our health to be going off the rails and to pressure our MPs for better resourcing.
I don't know how high your cholesterol is, but I do hope you get on okay with the Ezetimibe. Repatha is evolocumab a mono clonal antibody which works through a totally different pathway, but you have to inject fortnightly or monthly. Its prescribed for people with high cholesterol who can't tolerate statins. Pehaps you saw in the press recently about a new twice yearly injection for cholesterol control, Inclisiran. I don't know much about it. Maybe that would be an option. Good luck on your journey.
Thank you for reply and unteresti grazie information. I have heard of the new injection and I will look into it xx
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