Statins

[Dukeyears]

Just out of interest was anyone out there prescribed, and took Statins before the onset of PMR?????

[SheffieldJane]

No I have avoided them although they are regularly offered. There has also been a link, discussed here about the use of Statins being a possible precipitating factor for PMR. I’m afraid that I don’t have a link. You might want to put Statins into the search box.

[Dukeyears in reply to SheffieldJane]

Thank you so much to all of you folk out there who replied. Last May I very temporarily lost the use of my lower right leg nothing else, it returned in about half an hour tops, but to be on the safe side told my doctor, he sent me to a TIA clinic where they did all the tests.

The consultant who dealt with me at the end of all this congratulated me on the healthy condition of my brain, heart and overall condition, but said that i had 50pc build up of cholestral in the arteries at the side of my neck. I have always refused Stains in the past.when my GP offered them as not only had I heard doubtful things about them but more importantly it was going against my instincs.

I took the Statins, three weeks later I was reduced to being totally disabled to the extent that I couldnt even comb my own hair, I am sure most of you will know the scenerio. My GP put me on Steriods the worst of the pain is in abeyance and I am functioning albiet with a daily battle against the side effects. I would stress that before the hospital visit I was in tip top form, able to walk eight kilometer walks and work in my half acre of organic garden and all that that entails without ill effect, enjoying life to the full NOT Overweight, eating a good healthy diet. I am convinced that the Statins were the culprit in all this, hence my question, I am sure there are others out there who think they are suffering Arthritis and havent linked it to Statins. I wish you all a trouble free recovery from all that ails you. How lucky we are to have this wonderful forum where we can ask questions from others who really understand what we are talking about.

[Constance13]

Yes, I did! When I was about 70 my doctor put me on statins - I didn't have a heart problem but cholesterol was high and I had high blood pressure. I've never had any bad effects with them.

[cool4bob]

Before the onset of GCA; Jan 2018 Cholesterol level 7 put on Atorvastatin 40mg one per day, May 2018 went down to 5, Jan 2019 went up to 5.9 statin increase to 60mg, May 5.3 statin increased to 80mg. June I developed intolerable muscle pains and early July I stopped taking statins, don’t know if this helps.

More to come but a bit lengthy I will post via my profile.

[Hidden]

Yes. For a few years I was on atorvastatin which is apparently has a warning that pmr can be a "side effect". It did make my arms ache a lot. I was changed to pravastatin which was didn't. After. 14 years on that I decided to stop statins and found my mind cleared after a week - that was 3 years into pmr. Obviously that could have anything else.

[PMRpro Ambassador]

I didn't take a statin before PMR appeared but I was put on one when in hospital after a severe back spasm some years later. I was very unwilling but took a low dose to see how I got on. I was discharged from hospital able to walk OK albeit on crutches - but within a week I couldn't walk from the back gate of the hospital, up a short gentle slope to the A&E department without being in a state of collapse! I stopped the statin and discussed it with the pain management doctor I was seeing, an anaesthetist by trade. She agreed I was right to do so, at least in the short term. I then discussed it with my cardiologist - who also felt it was reasonable. Within a couple of weeks there was a notable improvement. It has been discussed at intercals - it is now listed on adverse drug reactions so I won't be asked again unless I have a cardiovascular event.

For those who haven't been on statins this is an interesting read:

medscape.com/viewarticle/92...

[Gary1310 in reply to PMRpro]

....I have been on Statins for about 15 yrs. Wondered about the PMR connection. I was only on 10 mg. I decided to stop and I mentioned it to both my Rheumatologist and my GP......they said I should continue. I read somewhere that the Adrenal glands need cholesterol.......what to do? Maybe take my 10 mg every other day?

[PMRpro Ambassador in reply to Gary1310]

If you have been fine, why change? Mine wasn't PMR as such, it was the more common muscular problems. Obviously if you have been on the things for 15 years it is unlikely they caused your PMR.

[Gary1310 in reply to PMRpro]

I read, somewhere that Adrenal Cortex is dependent on cholesterol to function. In fact we should increase our consumption of saturated fat to help the Adrenals. I have reduced Prednisone to 2 mg and hope my Adrenals start to produce Cortisol.....thinking Statins may interfere.

[PMRpro Ambassador in reply to Gary1310]

All adrenocortical hormones require cholesterol as the basis for their manufacture - but I seriously doubt most people require more saturated fat unless they only eat artificial fats. The amounts the body uses are pretty small and unless your total cholesterol is under 150mg/dl or 3.8mmol/l there is probably no need to worry at all.

[Gary1310 in reply to PMRpro]

Thanks...think I will not take statin until I am done with Prednisone..,then I may reduce my 10 mg statin to every other day. I do not want to confuse my Adrenals, Poor little glands...I have a small benign nodule in each glands......

[DorsetLady PMRGCAuk volunteer]

I was on statins for about 15years pre GCA, and all the way through and a couple of years afterwards - so about 25 years in total. No significant issues.

Came off them some 18months ago because cholesterol was very low.

When tested this year it had raised a bit so GP wanted me back on them, albeit at a very low dose. Tried them, found I am now intolerant of them, so that was the end - now marked on my records.

Incidentally we discussed the need for them, and that they are (supposedly) better for males than females - and she said she wouldn’t particularly want to take them!

[PMRpro Ambassador in reply to DorsetLady]

What happened when you tried them again?

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Thigh and upper arm muscular pains, Told GP I had enough pain with arthritis and wasn’t prepared to put up with any more.

As my risks are less than 15% at current cholesterol readings - I’m happy to take that!

Told to just continue eating healthily and keep up level of exercise.

That’ll do for me!

[tangocharlie]

It's my belief that LDL is not a contributor to heart attacks and statins are a total scam by the pharmaceutical industry. This, from the NHS agrees. 'This research suggests that – contrary to common belief – LDL cholesterol is not as "bad" as may be thought, and higher levels are not linked to all-cause or cardiovascular mortality'. In fact they found a reverse correlation. So why is the NHS spending a fortune on useless statins?

nhs.uk/news/heart-and-lungs...

[Gary1310 in reply to tangocharlie]

Thank you.....great information. I did not question taking statin until diagnosed with PMR. Now understand my Adrenals Cortex needs to have cholesterol to function....I need my Adrenals to kick in!

[piglette]

Anyone interested in Cholesterol and statins should read The Great Cholesterol Con. An eye opener. Written by a UK GP.

[Gary1310 in reply to piglette]

Thank you.

[janimaths]

Yes. I took statins since age 60 and PMR with steroids started when I was 73

[LIVEORDIEHEREIAM]

I have had experience with statins and autoimmune diseases. DorsetLady, you may be able to relate to this.

I was diagnosed with Statin-associated autoimmune myopathy (SAAM) in mid summer, 2019. SAAM is a symmetric proximal muscle weakness associated with extremely high elevations of creatine kinase (CK). The normal range is 22 to 198 U/L. Patients with SAAM will have CK in the thousands of U/L! That is caused by the disease quickly destroying all the large muscles of your legs and arms. I lost 30 pounds in two months.

This autoimmune disease comes in two versions. The version I had is characterised by the very welcome news that it goes away completely shortly AFTER YOU QUIT TAKING THE STATINS. I felt much better within a week of quitting.

The other version does not go away and continues to destroy your muscles until your kidneys become overwhelmed with all the dead tissue they have to process and eventually fail. If you get a correct diagnosis in time, you will be put on prednisone and the disease is held at bay, much like PMR. Thankfully, this version is very rare.

And then, for me, came PMR and Giant Cell Arteritis in October. Connected? I can't say, but I will always wonder.

[LIVEORDIEHEREIAM]

Thank you DoubleHipster. I had not seen this before. It gives you something to think about doesn't it?

My knee-jerk reaction was, "I'll sue!" But there is nothing to suggest that the makers of these medications had any knowledge of this.

As an aside, while I was still on the Statin before I became aware of my symptoms of SAAM , I was also put on Immiquimod, a cream used (in my case) to spur my immune system to target the sun-damaged skin on my head that would quite likely turn cancerous eventually and leave me with fresh scar tissue instead.

The results were not encouraging in that I still have many of the suspected "structures" (Actinic keratosis or pre-cancerous scar tissue) on my head and absolutely no inclination to repeat that treatment in view of my current condition.

All this immune stuff is like a big ball of razor wire in your lap. You can't leave it there but you dare not try to remove it!

Thanks again!

[PMRpro Ambassador in reply to LIVEORDIEHEREIAM]

The potential role of statins in PMR is discussed regularly here on the forum.

"there is nothing to suggest that the makers of these medications had any knowledge of this"

If you are referring to statins - there are warnings on the data sheets for at least a few of the statins, in particular simvastatin. The manufacturers DO acknowledge it and make the info available for patients and doctors to read.

[Hidden in reply to PMRpro]

Atorvastatin caused arm weakness for me almost 20 years ago. Dr immediately prescribed another... Once I got myself to the surgery. It was one of my first meds beside diabetes meds. I read EVERYTHING since then. The patient information leaflet is a good starting point and I read it and keep a copy. Then the Internet, not for woo woo things, but for solid research and information from drug companies. I am lucky my background is research but I would advise everyone to at least read pil several times and check out the drug companies site and a site that presents interactions, contraindications, side effects etc. And if you have the skill set, at least find research articles. You might not understand the meat of it but reading the introduction and final discussion can tell you a lot.

[LIVEORDIEHEREIAM in reply to PMRpro]

PMRPro, the data sheet that I have discuses muscle pain but does not specifically mention PMR or GCA. I was prescribed Atorvastatin.

Your point is well taken though. They knew that things of this sort could happen. I wish I had paid more attention to those possible side effects before consenting to take it! I resisted for many years!

I had bad feelings about the whole idea of taking any statin because way back in the 1970s, my Dr. talked me into taking Mevacor. I quit it after a month or two because I could sense "something wrong" in my gut. Nothing specific. Just felt wrong.

Looking back, I see that statins were the medical industry's latest golden egg and practically everyone "needed" to be on them. In my case, my cholesterol was not high, just over the then-accepted 200 limit so my Dr. pushed it at me.

[PMRpro Ambassador in reply to LIVEORDIEHEREIAM]

I don't think atorvastatin admits it - but I read something recently that said it was one of the bad ones.

This lists the cases associated with various statins

ncbi.nlm.nih.gov/pmc/articl...

and this is a case study

rheumatologynetwork.com/vas...

[Hidden in reply to PMRpro]

I know there are lots of statins but the speed my gp changed them without question suggests she was aware. I usually have to get wild horses to get them to consider changes.

[HeronNS]

statnews.com/2019/04/03/sta...