Could my new statins have upset the Apple cart?

[Zebedee44]

I can see that this subject has been raised before but I’m feeling sorry for myself today and need the support of my forum friends and advisors.

Just for a quick bit of background, I am six years into this PMR and struggling to taper below 7mg, maintaining 6.5mg but experiencing a lot of pain in my jaw, chin, hands and wrists. Recent blood tests to diagnose the possible cause of my itching hands and feet confirmed nothing other than that I have extremely high cholesterol (9.4) due to familial hypercholestérolémie, so the young registrar I have been seeing started me on 40mg Atorvastatin ten days ago.

I gave up statins in 2017 when I began to think they had caused the pain and weakness I later came to know as PMR and none of the doctors treating me since has been concerned, but this young registrar is doing her job and I must admit to having had chest pains and some irregular heart rates as well as heartburn and sore throats, for which I was prescribed omeprazole.

A few days after starting Atorvastatin I nearly fainted on rising in the morning and was nauseous and weak with an upset stomach. I thought it was a virus doing the rounds and treated myself very gently for a few days, then probably overdid it on Wednesday doing my volunteer charity shop work. Yesterday I could barely walk up stairs and today everything hurts.

I have cut down the statin to 20mg and taking it at night now (although there is nothing in the leaflet about timing) and considering taking a bit more steroid today, but I don’t know if this is a flare or just my body adjusting to a new drug.

I am due to see a Rheumatologist this week to investigate possible alternative diagnosis of PMR and the arthritis in my thumbs and hands which has probably been concealed by the steroids. Also to hopefully put my mind at rest about the pain in my jaw and chin. I know I am anxious about this forthcoming appointment and that stress plays a huge part in PMR symptoms, but today I just don’t know which of these matters is causing these horrible waves of pain and stiffness.

I am expecting a call back for my excellent GP surgery later this afternoon but hoping my understanding and knowledgeable friends here will offer some comfort too. Thanks, Chrissie

[PMRpro Ambassador]

Atorvastatin nearly had me in a wheelchair in under 2 weeks. I stopped. My regular cardiologist was OK about it but the spare got all iffy and insisted I tried Rosuvastatin. Three weeks of that coincided with a flare, the add-on effects of which have taken the best part of a year to get under control, Really not willing to try any others.

I am now on Ezetimibe which has certainly reduced the cholesterol noticeably. That is also available in the UK together with bempedoic acid - and they have similar cholesterol reductions to statins.

[Zebedee44 in reply to PMRpro]

I asked for ezetimibe which worked better for me before but the doctor went with the statins. The way my chest feels now I think it has not been the right approach.

[PMRpro Ambassador in reply to Zebedee44]

Just say no ... I did.

[DorsetLady PMRGCAuk volunteer]

Would say, quite likely - affected both my brother and I like that - many years ago. ..and it doesn't matter what time of day you take it [in fact very often suggested at night] so long as it's the same time every day.

[Rugger]

I'm so sorry to hear of this latest episode. I hope that your GP and Rheumatologist will be able to help asap. I have no 'knowledge' to add, but just wanted to let you know I'm thinking of you. 🌺 🌷

[Zebedee44 in reply to Rugger]

That’s kind, Thankyou Sue. I feel as if I should understand how to handle this PMR by this stage but it sure keeps us guessing. There’s no calm cruise to the finish line where PMR is concerned and I have a long way to go.

I don’t think a start rate of 40mg Atorvastatin has worked for me and even 20mg isn’t being very well tolerated. It appears to be contra indicated with steroids in causing them to be excreted more quickly and I wonder if that is why I am experiencing so much PMR pain now. And if the steroids in the body are passing more quickly does that leave the adrenals struggling to cope? That’s pretty much how it feels and I haven’t felt this stiff and immobilised since 2017 before the diagnosis.

I have always been susceptible to quite low doses of other meds which is why I have been reluctant to try leflunomide with its unwelcome side effects. I hope the Rheumatologist accepts my reason for not starting it. Two years further on and getting nowhere fast I really hope he offers some further investigation and another approach. I am going to my appointment prepared for a serious discussion and not to be disregarded. I’m reading back through Prof Dasgupta’s book and wondering how far things have moved forward in his discipline.

You haven’t had an easy time of it yourself after quite a good start, have you? Likewise Sheffield Jane, and the common denominator I think is you’re Sarah Mackie. We all need a caring and interested Rheumatologist. Best wishes Chrissie 🌷🌷

[Rachmaninov2 in reply to Zebedee44]

I have been taking 80mg Atorvastatin each night as instructed, along with some other new medications since having a heart attack 22 days ago.

Like you, I have been thinking that my increased PMR pain is being caused in part by the fast excretion of my 10mg Pred due to an upset stomach. I am also feeling weak and nauseous and generally unwell.

I have an appointment at the Cardiac Rehabilitation Clinic on Monday when hopefully I will have the opportunity to discuss my medication.

Wishing you all the best with your appointment.

[PMRpro Ambassador in reply to Rachmaninov2]

How are you doing with your recovery? You kept that quiet!!!

[Rachmaninov2 in reply to PMRpro]

Thank you for responding, very much appreciated! Touch wood I am doing OK but hope to gain a bit more insight at Mondays appointment. It happened completely out of the blue and I think I may still be coming to terms with it all, lots of conflicting emotions and hard to put into words. It’s good to be back, you’ll never know how much support I have felt just by being part of the forum again. Thanks so much, I’m ever grateful to you all.

[PMRpro Ambassador in reply to Rachmaninov2]

We're here for other things you know - not just PMR! How was the angioplasty?

[Rachmaninov2 in reply to PMRpro]

Yes I know, I’ll remember. 🙏

Not the most pleasant of experiences to be honest (I’m aware that others may be in a similar situation.) It was done at St Thomas’ in the end and I think it took about an hour.

[Zebedee44 in reply to Rachmaninov2]

I'm so sorry to hear about your heart attack and hope they sort everything out for you at the clinic. Thankyou for your comment to my post. Chrissie

[Rachmaninov2 in reply to Zebedee44]

Thank you Chrissie.

[Bcol]

Many posts on the forum re statins. I started mind many years ago and the first ones I tried, Simvastatin, Pravastatin and Atorvastatin (Lipitor) gave me worse joint pain than my OA. Doc put me on Rosuvastatin as a last resort and they have been absolutely fine. I've been on 5mg for many years with no obvious side effects.