Low Dose Pred Side-effect Study

[Knit11]

fyi

evidence.nihr.ac.uk/alert/l...

[DorsetLady PMRGCAuk volunteer]

Think this has been posted before, but thank you.. can I suggest it would be more useful for other members if you said what it was being researched rather than just "study".. it would then appear in related posts and the search facility. Thanks.

[Knit11 in reply to DorsetLady]

You are right. I will do that if find other articles. I didn't see it before.

[DorsetLady PMRGCAuk volunteer in reply to Knit11]

Can't remember who posted it...sorry..

[Knit11 in reply to DorsetLady]

No problem! I didn't question it; I wouldn't have posted it had I seen it here before.

[DorsetLady PMRGCAuk volunteer in reply to Knit11]

Know you didn’t ask -but I sometimes remember random posts, sometimes I don’t ! 😊

[HeronNS in reply to Knit11]

I think it is possible to edit the title of a post. Then the related articles with same keyword in title would appear on the page too.

[Knit11 in reply to HeronNS]

I will try. Thanks!

[Knit11 in reply to HeronNS]

Thank! It worked 🙂

[PMRpro Ambassador]

My atrial fibrillation existed long before I started pred but hadn't been recognised as such so I suspect would have been ascribed to the pred. However, while the evidence does suggest there is a small risk I suspect this is associated with the desperate drive to reduce the dose and get us off pred that we've noticed recently. Which is all very well, but the inflammation is also a risk factor for cardiovascular disease amongst other things - and the symptoms of PMR lead to immobility, also a risk factor. Pred is also linked to development of diabetes - also a risk factor for CVD - and we know you can reduce the risk of that but do we ever hear that from the GP?

[Longtimer]

Interesting, but another reason patients will be told to be off Pre d in two years!....also they don"t give an alternative to pred.....because there isn't one!

[Knit11]

Agree! I am on Pred too. I only thought it is good to be aware of it.

[SheffieldJane]

Thank you for sharing the article. I read this sort of article and wonder what patients are expected to do for the duration of an extremely disabling and painful disease, never mind the effect of the dangerous inflammation doing further damage. There is hope of other drugs such as Actemra with some hope of reducing pain and inflammation but in the case of your eyesight being at risk, high dose Pred would always be the first choice to save the loss of sight. It is not helpful for doctors having Prescribed the only helpful and effective drug and then make the patient feel guilty and unhappy for taking it properly.Personally I am more disturbed by the side effects of the drugs we are encouraged to take such as Methotrexate, Alendronic Acid and even Ro-Actemra ( Tocilizumab).

[Knit11]

I know. We really don't have any choice. The study included other diseases and concluded that there should be more treatment options (I also read the published scientific one). Every medication has side effects and we need to weigh them against the benefits. It's also good to know that low doses aren't as safe as we used to believe. Maybe such a study will prompt pharmaceutical companies to consider finding new medications.

[HeronNS in reply to Knit11]

Yes it is disappointing to realize that even my usual 2 or 2.5 dose has probably been damaging as I've been taking pred for over seven years. But at least those 7 years have been bearable!

[Knit11 in reply to HeronNS]

Sure. This definitely counts! That's exactly what I mean; we need to make an educated decision. Glad you manage well.

[Raewynne]

Yes I definitely have cardiovascular disease now after being on prednisolone.Rather upsetting for me and my family but I just do the best I can each day. People say you look well.They don't know your internal weaknesses. I just do the best I can for me.Too bad about anyone else .Rest when I need to and avoid stress like the plague.If only we could!One day we may be able to rise above these physical weaknesses. Wouldn't it be wonderful. One day.

[Knit11 in reply to Raewynne]

Sorry about your condition! I agree that people don't think you have problems when they don't see their physical signs. I ignore it and don't even bother explaining. Avoiding stress is essential. I started meditation and it helped change my attitude towards stressful situations. I observe them and move on if I realize that I can't change anything. Glad to hear that you manage to avoid stress too. It sure will be wonderful to rise above our physical situation! 🌞

[Raewynne in reply to Knit11]

Yes I meditate too. regularly.Not buying into unpleasant things is so important. I value my peace.!

[NursePeggy in reply to Raewynne]

To Knit11 and Raewynne. I desperately need to learn how to meditate to help lower my dangerously high spiking blood pressure. Can either of you give me some help with this - how to start etc. I don’t seem to be able to do it. I would be so grateful ….

[Knit11 in reply to NursePeggy]

I tried apps and a mindfulness class but they didn't help. The following video, sent to me by my son did it. It is explained clearly without fanfare: youtu.be/ukTaodQfYRQIf(Not working as expected?) you have Netflix, there is an excellent series by Headspace called A Guide to Meditation.

Don't hesitate to reach me personally if you have questions or want to share your experience. I am not an expert but I can share all I know.

Good luck!

[NursePeggy in reply to Knit11]

Thank you so much. That sounds like just what I need. I will message you if that is ok ?

[Knit11 in reply to NursePeggy]

Absolutely!

[Raewynne in reply to NursePeggy]

Hi Wishing you all the best.Yes I think YouTube would be very good for you to go to.Meditation for me helps to just slow down and relaxes my mind and body.A simple thing to do is just take three deep breaths and feel a golden light showering down over you..You just imagine it.Good luck

[NursePeggy in reply to Raewynne]

Thanks Raewynne. I shall certainly try !

[HeronNS in reply to Raewynne]

I wonder if whatever causes the heart issues is the same thing which causes us to have weaker muscles after being on pred for some time? After all, the heart is a muscle.

[Raewynne in reply to HeronNS]

I think it may be..I had terrible steroid myalgia (couldn't walk at all)in the beginning from prednisolone Unfortunately the damage has been done with my heart but I am rehabilitating myself bit by bit. Recovery is a long haul.

[Judyliz]

Thank you Knit11, I missed this post before, and I think I read everything. Down to the old rubbish concentration I am sure.Very interesting on so many levels.

Although now retired, I worked in the NHS for over 40 years. Our professional journals are published monthly and have excellent articles about research, and endeavour to keep practitioners up to date.

My worry is that, (some of) the medical, nursing, and allied professions are now so busy they no longer have the time and/or inclination to read articles, especially when it is eating into their own private time.

I get a sense that over time forum members are becoming well read and better informed about their condition/s and try to work more collaboratively with their doctors. An up hill battle though.

Thanks again

[Knit11]

It is worrisome when professionals aren't updated with latest research. Whether they are or not, I believe it's up to the patient to acquire as much information about their condition and possible treatments and advocate for themselves. This forum is excellent for getting the information we need.

[artisam in reply to Knit11]

I absolutely agree with you. My husband is an avid reader of medical research and has encouraged me to do the same. It is amazing how professionals' attitude changes towards you when they know you are well informed - this site had been a godsend for that. I am hopefully nearing the end of my journey (1mg) but was very interested in the articl you posted. It reminds us the take care of our selves in so may other ways. It is so easy to become sedentary, add that extra glass of wine and take our eyes off diet when we are struggling with pain isn't it?Well off for a walk now and will resist the croissant hubby has just bought me as a treat!😂

[PMRpro Ambassador in reply to artisam]

I went for my walk - the best for weeks - and stopped for a Birdy (aperol spritz) in the village. And succumbed to a Marillenknoedel (apricot dumpling) ... Though that will be it until next year - the Birdy is a weekly treat ...

[artisam in reply to PMRpro]

Sounds heaven. Do you live in the mountains?

[PMRpro Ambassador in reply to artisam]

I do

On the outskirts of Bruneck - in the village whose image is used for Bars on this page:

bruneck.com/en/city-highlig...

[artisam in reply to PMRpro]

Oh my, lucky you. We used to hike in the Austrian Tyrol in our younger days and have skied many times in Italy, but this is an area I've never visited. It looks pure heaven

[PMRpro Ambassador in reply to artisam]

The Dolomiti Superski area is a wonderful and varied skiing region but it is also a lovely place almost all year round - April and Novemeber are a bit so-so though.

I love living here and intend to stay as long as I can - above all, my heating bills shouldn't be as eye-watering as in the UK if I were to come back! I've actually lived here longer than any other place I've lived in except the place I was born.

[Knit11 in reply to PMRpro]

Looks gorgeous!

[Knit11 in reply to artisam]

Good for you! You got the right attitude and act on it. I noticed that professionals treat you differently when you ask informative questions. It also helps as the questions are on subjects we couldn't find answers on our own or pertaining to our circumstances. Glad to hear that you are on such a low dose! Gives me hope 🙂!

Enjoy your walk and good luck in reducing further!

[artisam in reply to Knit11]

Thank you. I hope your journey is not a long and arduous one.

[Knit11 in reply to artisam]

So far, ok. But I feel that the PMR is with me almost 2 years since it came.

[PMRpro Ambassador in reply to Knit11]

Hardly surprising - the 2 year PMR myth Prof Sarah Mackie calls it. Barely a third are off pred in 2 years.

[artisam]

I put my quicker journey to recovery down to a speedy diagnosis. I know people on this forum who were years before they were diagnosed, I was only 4months. It's only my theory, but there may be a connection - would be an interesting study.

[Knit11 in reply to artisam]

Yes, it could be an interesting study! My GP recognized it immediately, though it took a while with the tests and ruling out Lyme disease, which is prevalent in our area.

[artisam in reply to Knit11]

Well, here's hoping for you, but don't be too impatient; it will go when it will go and there's not much to be done about that. Stay positive x

[HeronNS]

I'm in the process of being investigated for possible heart issues. Going to take a long time as my referral to have a stress test as next step apparently hasn't landed yet. First step was a chest x-ray. Got call from doctor and I knew what he was going to tell me. He started to mention an "incidental" finding, which is evidence of old granulomatous disease, and I gently cut him off and told him I knew about it, and that as far as I knew it was related to my diagnosis of sarcoidosis. He'd been going to launch into a long description accompanied by reassurance that it wasn't cancer! His relief that I already had a suitable explanation was palpable. (He's only been my doctor for less than two years and as he only uses a computer he likely has never seen my old paper file, if it even still exists, with the biopsy-proven sarcoidosis diagnosis in 1982!)

Re the heart, I'm hopeful nothing too serious will be found, although it is a worry. I'd like to live long enough for my very young grandchildren to have some memory of me. On the other hand I can think of a lot worse things to clock out with than a dicky heart!

[Knit11 in reply to HeronNS]

Good luck! I hope the findings, if any, will not be serious. Keep in mind that there are many treatment options to help manage possible conditions. Please keep us informed. 🤞