Back story aged 58 now PMR for 4 years never managed to reduce Pred below 12.5ish. At the moment I am still on 12.5 but pain is steadily increasing again but I know of no reason to flare. Tried 5 days of 17.5 and it helped but didnt sort it. Could the Simvastin I started on about 10 months ago account for any of the general muscle pain? Is it worth a month off it to see if it makes any difference at all. I really cant keep just increasing pred to more than this level but the general arm and leg 'toothache' is really begining to get me down and affect my mental health too. The pain lasts all day whereas with the PMR usually even on a bad day by late afternoon I am pain free. I do not have the usual accompanying stiffness apart from usual very first thing in a morning.
Simvastin and muscle pain: Back story aged 58 now... - PMRGCAuk
Simvastin and muscle pain
It is a possibility and simvastatin does have a bad reputation for PMR-type pain, it was even listed on its data sheet at one time, don't know if it still is.
This study agrees - and the time to onset can be anything up to over a year
ncbi.nlm.nih.gov/pmc/articl...
Thank you for that. I wasnt taking them for the first 3 years of PMR but things just seem to be gradually getting worse so, after reading that I will take a month off the statins before my next appointment with consultant so I have some info to base any discussion on. Its the only statin I have tried and she wasnt keen to give me any at all really.
Well done her IMHO - did you ASK for a statin?
Yes sadly as my UK GP told me I needed it as family history has high cholesterol and my levels had crept up to Total 306 HDL 103 LDL 182 Tri 105
But it sounds as if Spanish guidelines are different? I am on Ezetimibe here in Italy as I don't tolerate statins. There are other options.
Hi PMR pro, how do you tolerate the Ezetimibe? Has it lowered your cholesterol?
Fine as far as I can tell and the cholesterol was lower though I can't tell you how much lower - my doctor seemed satisfied enough.
Good to know, thank you
Simvastatin never worked for, like a couple of others it gave me horrible joint pain. Rosuvastatin has been completely fine though. Probably worth a trial of stopping it to see what happens.
Felt like I’d been hit by a train on Simvastatin but you’ll know soon if you stop taking it
Thank you I hope it is the answer to everything but we will see
Personally I would stop taking the statins as a trial and see what happens.
Have used Ezetimibe for several years without problems, Simvastatin gave me muscle and joint pain. The downside is that it is not nearly as effective at reducing cholesterol and that is borne out by several long term trials.
I was taking Atorvastatin for a few years before PMR, used this instead of simvastatin due to risk of muscle pains with simvastatin. (My husband had dreadful pain on simvastatin but none on Atorvastatin). No pain for me at all since starting Atorvastatin. I stopped it before diagnosis of PMR as GP thought this was the cause of my pain and my cholesterol slowly crept up, Restarted it about a year ago and still trying to get my cholesterol back to a good level. Maybe try another like Atorvastatin before stopping?
Atorvastatin was the original I tried - almost in a wheelchair after a couple of weeks at half dose. Then rosuvastatin did something unpleasant as well and coincided with a massive flare.
sounds awful. I haven’t heard of the one your on but will make a note as you never know what tomorrow will bring
What has been interesting here is that there is no real argument about intolerance - it is firmly in my notes.
Hi, I also have familial high cholesterol which I have ignored since starting pred six years ago having genuinely believed simvastatin to have been the cause of the PMR.
After recent blood tests I started Atorvastatin which made me unwell and Rosuvastatin which made me bloated and constipated. I think my body objects to new drugs even quite low doses. Evidently there are alternatives to statins and I am due to be seen in the Lipid Clinic to discuss options. I have previously been successful with Ezetimibe but each time I mention it to the GP they go quiet!
Maybe you should ask about a consult with your local Lipid Clinic but meanwhile I would also suggest you stop the Simvastatin. Good Luck, Chrissie.
GPs going quiet often has a lot to do with cost!!!! Though the generic version isn't excessively expensive bought in bulk online.
Ezetimibe (Generic) 10mg 28 Tablets 18.00
Ezetimibe (Generic) 10mg 56 Tablets 28.00
Ezetimibe (Generic) 10mg 84 Tablets 38.00
Different matter with the brand though
I have to pay for my drugs anyway so i dont think that will be factored in at all.
Simvostatin had such a devastating effect on my husband that we had to sell our house and move closer to a daughter so she could help me look after him. We had a ramp installed in preparation for a wheelchair.We registered with a new doctor who took him off Simvostatin.
He began to get better.
That was 12 years ago.
He is now 86 and looks after me.
I'm the one facing a wheelchair. I have PMR, cancer, heart problems, arthritis and asthma.
He vacuums, shops, cooks and does DIY!
it could certainly be the statin, it would be worth having a blood test Creatinine Kinase done to check for muscle damage. I’m having a break from atorvastatin for the same reason & I’m feeling much better though not completely normal now. There is a new treatment Bempedoic acid which works on the liver & doesn’t affect muscles but it’s not as effective.
Good morning l was taking atorvastatin until four/five weeks ago. I have a very painful hip issue so thought the pains l was experiencing where due to that and GCA. However it became so widespread that l decided to stop and see what happened. I still have pain issues but the joint pain is virtually gone the muscle pain is a lot less. I haven't yet consulted my GP. I had thought about simvastatin but now will mention the possible issues.
Hello Pawscat. I tried three different statins , all of them made my legs feel like I was walking through treacle. One of them was sim astatine. Finally my GP put me on Pravastatin. I think they may be slightly more expensive. They may not suit you but I have been fine for the past few years on them. I have bearable aches in arms and legs but it is different to the statin pain. I keep tapering and my body after a couple of weeks reluctantly gets used to it. I wish you well.
I had exactly the same experience with Atorvostatin. Both of these statins work in similar ways. I asked my GP if she could prescribe a different statin. She did - rosuvaststin. The pain in my legs disappeared within a week. I now feel completely different.
when my GP or I wonder if it was my Lipitor, only had to stop for 1 wk or so. Medication 1/2 life and washout is typically more rapid than i had thought... pretty simple... Of course investigate on your own and some metabolic mechanism pharmacokinetics do vary
I don’t know if my experience will be of any value but I was taking Crestor 20 mg Rosuvastatin, for high cholesterol for 5 years prior to my diagnosis of PMR in July 2018. To be honest, I don’t think that I would have linked taking statins with my PMR. However, stupidly , I forgot to pack them when dog sitting and didn’t take them for almost two weeks. The symptoms of my PMR during that period were reduced quite dramatically. This led me to ask my rheumatologist about it. I was told, that in the States there was some evidence of a correlation for some people taking statins with the symptoms of PMR. I would not advise anyone to do as I’ve done, especially without consulting a Doctor but I stopped statins. After 6 months of virtually no pain, I had an extended period of no sleep and felt slight pain again. So I increased my pred by 1mg and so far, all back on track. I There is a possibility I may have FMH, a genetic disorder which causes high cholesterol and I’m seeing a Lipid specialist end of May. I will ask if there is any more information on PMR related symptoms for some people taking statins. I wish you all the very best with controlling the pain you are feeling. You’re in my thoughts and I hope you can find a pred level, that is best for you and will enable you to be as free from pain as possible.
Thank you so much. I had PMR before taking the statins but now nothing seems to bring it under control so I am really hoping that stopping the statin leaves only PMR to get sorted. The pain is so mixed up now that I have lost all track of what is what really.
Ah bless you, I’m so sorry for all the pain you are feeling right now. I know it is sometimes overwhelming. I know it doesn’t seem like it but you’re not alone in this. This forum, has been a Godsend to me at times. It helps so much , to know that there are people here, that really care and are so supportive. X
wow, that is wild. thank you for the info on what happened to you.
Hi Pawscat
Google ‘what is the number one side effect of statins’.
And you’ll come up with only 1 answer - muscle aches - nothing else.
The doc or patient leaflet don’t tell you that.
Why not, for full informed consent to be given?
All the leaflet says is muscle aches is just one of about 10 Very Common or Common side effects.
Lies.
Muscle aches are the number one side effect of statins.
All the best.
Persevere99
That is not the result of a recent study published in 2022 which says
"Previous reports that statins are a major cause of muscle pain are likely to have been the result of methodological problems in the studies giving rise to those reports."
ox.ac.uk/news/2022-08-30-ne....
The medical director of the BHF has said
"However, [this study] also shows how common muscle pain symptoms are. Almost one quarter of patients who participated in the trials reported such symptoms whether they were taking statins or placebo. It is vital that the genuine concerns of people who do experience muscle symptoms are not dismissed and that doctors have continued consultations with these patients to ensure their medication is tailored to work best for them."
I am only giving an up to date view of the problems with statins - I don't take a statin as they make me ill.
I found this interesting too bhf.org.uk/what-we-do/news-....
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