Advice please : Hi all, I would be most grateful... - PMRGCAuk

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Advice please

SueMacD profile image
15 Replies

Hi all, I would be most grateful for your advice. Currently on 11mg of Prednisolone using the DSNS plan. I’ve started to feel that my shoulders are slightly heavy (not pain), a slight nagging in left temple (not pain and not continuous) and a new symptom of weakness in my middle fingers. Shall I stick at 11mg or increase? My BP and cholesterol (7.4) are high and BP not decreasing with 20mg of Lisinopril so nurse prescribed statins and Amlodipine. Feeling nervous about the interactions of all the drugs, especially as info on Statins says muscle ache and inflammation of pancreas and liver as possible side effects, will taking Statins cause my PMR to flare? Have had UTI since June and on 4th lot of antibiotics which are not working and battling with sciatica since Feb. Tried to get appt with GP to discuss all my concerns and was told no appts or telephone consultations with her or any other GP in the practice for over two weeks. Thanks for listening, looking forward to your good advice as always.

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PMRpro profile image
PMRproAmbassador

Given some statins actually list PMR as an adverse effect - who can say? To be honest, if my BP wasn't responding to the currently selected drug I would want someone more than a nurse to be adjusting my medication - I don't care if they HAVE done a drugs course. There is a fixation with amlodipine too - anyone would think it was all there was! And until they have sorted that out, I would be politely declining the statin - unless you have already had a cardiac event? Studies have shown that statins do not improve outcome long term for women who have not had a stroke or MI already and the jury is out for women who have - they aren't the lifesavers they try to make out. Polypharmacy (lots of drugs) isn't simple and can kill. two drugs may not interact - the more you add, the more problems may be created.

A UTI that hasn't responded to 4 attempts with antibiotics needs referring to urology - although are they sure it is an infection and not cystitis which is a symptom and can have other causes including PMR and pred or irritation due to calcium supplements if you are on those.

If I were you I would be presenting myself at the practice and telling them I want an emergency appointment if they can't offer anything else for more than 2 weeks - having accepted an appointment at the soonest they CAN offer one.

SueMacD profile image
SueMacD in reply to PMRpro

Thanks for the advice, I’ve written GP a letter asking her to call me. She said I could call any time, but getting past admin is difficult. I will be at the surgery at opening time tomorrow. I do take calcium so will mention that too.

PMRpro profile image
PMRproAmbassador in reply to SueMacD

It's what I would do - not that I have to as my single handed practice sees you same day providing you wait!

A bit more about the calcium: several people have experienced the formation of calcium grit in their urine which - as you can imagine - is very irritating. It isn't a problem for me providing I drink plenty and it was always after travelling or being out of my normal environment where I hadn't drunk my usual number of large mugs of tea etc that I noticed it. My answer was to not take the calcium supplements on those days and then eventually I asked for a different brand which isn't as bad. And it has worked.

Christophene profile image
Christophene in reply to SueMacD

Statins are notorious for causing muscle and joint pain; this from an anesthesiologist and pain management specialist; his practice was getting many referrals for pain management; the doctors in that practice looked at all the drugs these new patients were taking; all had in common statins. The pain went away when these patients stopped statins, not to mention the liver problems.

If you can control high cholesterol with something else and diet, do it and stop statins. You don't need pain on top of pain. My husband had high cholesterol and refused statins; he passed away 7 years ago from something totally unrelated to high cholesterol.

Constance13 profile image
Constance13 in reply to Christophene

Unless you are a doctor you should NEVER advise someone to stop taking a particular medicine.

Christophene profile image
Christophene in reply to Constance13

I don't recall ever telling someone to stop a medication without consulting a physician. However, many in this group have the knowledge to make their own decisions; the physician as God complex is not healthy. I am a retired RN and medical malpractice attorney; I have seen the indefensible harm caused by physicians, and some of them were also my clients.

Pmrmolly2018 profile image
Pmrmolly2018 in reply to Christophene

My lovely Polish GP recommended daily Benecol (spread and yogs) as part of my diet as I refused Statins...they had messed with my memory! After 3 months further blood test showed reduction to satisfactory level of cholesterol. This was 2 years ago..pre PMR. I now have bi monthly blood test for cholesterol and sugar levels at local pharmacist. They charge £5 but as our surgery is overloaded

(Although extremely efficient) I feel this is worthwhile to keep an eye on things for my own peace of mind. The surgery do annual full blood checks and manage my PMR via email updates when I request new prescription. Telephone appointments if necessary when bad flare in February with follow up from the surgery paramedic at home. They are amazing. They treat me like a grown up!

Christophene profile image
Christophene in reply to Pmrmolly2018

How intelligent for a pharmacy to offer those services. Good all around.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi

I would say 11mg is not quite enough - so maybe wise to go back up to 12mg - a couple of days should show if that sorts the problem. Hopefully if you’ve caught it quick enough, it will be.

If so, stay there for a few weeks to settle before tapering again.

If it doesn’t - then maybe up to 15mg for a few days to sort things - then you should be able to drop back down to 12mg quite quickly. And again stay at 12 for a while.

As for statins and BP tablets I was on them all through GCA without a problem. They suit some, not others, but you won’t know until you try. And obviously if GP thinks your BP and cholesterol are high they have to suggest them.

SueMacD profile image
SueMacD in reply to DorsetLady

Thanks again for your advice, I will increase, I've been a bit silly putting it off. I was hoping to get rid of UTI and sciatica to concentrate on the PMR. Thanks again.

PMRpro profile image
PMRproAmbassador in reply to SueMacD

But both could be being made worse by the PMR ...

Hi SueMacD, it sounds like you are having a bit if a hard time at the moment. It could be a touch of nerve issues in your shoulders/fingers so if go not available try the local walk in if you are in UK. Have you taken pain killers and even a quick dose of ibuprofen. It isn't something I would normally recommend but if it works it does suggest it's inflammation.

You need to keep an eye on the head pain, have you had it at all before?

Some statins can be implicated in PMR. I was on them for 17 or 18 years and recently stopped them despite cholesterol being high. I also have high BP. They initially tried amlopidine but I felt dreadful on it. Shoulders and arms hurt, and just felt dreadful. I stopped taking it and felt a bit better straightaway and much better after a week. Was just left on linsiprisol thereafter and my bp well controlled as I have tapered pred. Perhaps you could try some relaxation for BP and ask Dr to change amlopidine (I know it's one that doesn't suit some people).

I am sure you will get more replies from others with uti issues. I hope you feel better soon. 🌻

SueMacD profile image
SueMacD

Thank you for your reply and advice. I’ve been on 5mg of Lisinopril for 30 years without any increase or side effects, recently put up to 10mg and now 20mg but BP not controlled. Possibly Prednisolone pushing up BP and cholesterol???? The nagging left temple is the only symptom I had after starting Prednisolone for PMR, Rheumatologist diagnosed GCA but it’s never been more than a nagging feeling and certainly nothing like the headaches described by other GCA sufferers. It’s returned both times I’ve had a flare but never gets any worse. Thanks again.

suzy1959 profile image
suzy1959

Just other word on Amlodipine- I was taking it last year and had horrible swollen feet and ankles which I couldn't put up with anymore, so am on a different drug now and so much happier! It seems to work better too. I gather there are many different BP drugs and it is a matter of trial and error to get the right one for you, however, the swelling is a very common side effect of Amlodipine.

Noosat profile image
Noosat

I found that I was allergic to statins, so for many yeas have been on amlodipine, I pill twice a day, and a diuretic. My blood pressure has been low with this medication. In a way I feel relieved not to be able to take statins because a number of people have had poor outcomes from taking them. New is not always an improvement.

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