Prednisilone, a minefield?: Opening the box from my... - PMRGCAuk

PMRGCAuk

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Prednisilone, a minefield?

12 Replies

Opening the box from my pharmacist just over two weeks ago was quite an experience. 8 drugs, various regimes to follow and all relayed to me by my 20 year old, who I have not seen so anxious since the day he opened the envelope containing his A level results! A further call to the pharmacist to clarify a couple of things and I was ready to go. Almost instant fix from the prednisilone and relief.

Following on, I visited numerous sites, my absolute go to being the NHS website (NHS.uk - there is also a very useful app which allows UK users to access some of their primary care records, make appointments, re-order prescriptions). The site offers a clear basic synopsis on everything from common ailments, through to the value or taking supplements. There are many more which are more details on a whole range of topics, which are useful.

Having worked in a medical environment as a non clinician, I have a limited, but insufficient knowledge of pharmacopoeia, but always err towards expert advice. Some sufferers in this group have a form of “earned autonomy” whereby they can adjust their level of prednisilone, based upon the joint consensus agreed between themselves and their lead clinician, others like me, are less so, particularly as my dosage is quite high, although I expect that should my condition not resolve fully, I may be allowed to address any fluctuations as needed.

If you are still with me, possibly new to the site and more importantly confused about what you have read on the internet, or wonder why you see posts like “I have just increased to 25mg”, this easy to follow guide may help you whilst you come to terms with your situation.

If you want yet another set of information and you haven’t come across this link, you might want to book mark it in your browser.

nutranize.com/wp-content/up...

12 Replies
TheMoaningViolet profile image
TheMoaningViolet

Thank you for sharing this informatinon. I have looked at this leaflet and just want to comment on author's recommendation for using their supplement which contains calcium in the morning at the same time as Prednisone. I assume it may be important that we are talking about Prenisone instead of Prednisolone in terms of how quickly it is released into the bloodstream? The usual advice is not to take a calcium supplement at the same time as Prednisolone as it affects calcium absorption.

in reply toTheMoaningViolet

US term for the same generic drug and of course this is a leaflet generated for the US market.

As part of my drug regime, I am supplemented with prescribed Calcium by the trade name of Adcal-D3 - calcium with vitamin D, I also take additional magnesium, under advice, as my dosage for GCA remains high. As an additional measure, I also take Alendronic acid, I suspect again and only due to the high dosage of prednisilone, to help to rebuild any bone deterioration brought about as a side effect of my medication.

Thanks for commenting.

PMRpro profile image
PMRproAmbassador in reply to

They are not the same generic drug. Prednisone must be processed in the liver to produce prednisolone which is the active form.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Quite a lot of advice is applicable/sensible - but not sure how walking will stop Pred induced cataracts and raised glaucoma pressures.

Despite the warnings regarding salt intake (which I agree with), some of the suggestions, particularly the spiel about the product being touted may need to be taken with said substance.

Please check with GP before any OTC supplements are taken.

in reply toDorsetLady

Quite so. I am only taking what I am prescribed and have no desire to promote either this company, or their product. I just felt the lay out and clarity of their advice section could be valuable to some.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply to

Yes it is, and does.... but some patients are more susceptible than others.... and willing to try anything to get off Pred.

in reply toDorsetLady

Of course. Me too!! However, believe it or not, I am just so thankful to be taking it, as having shared a similar occurrence, in fact more severe than mine, we know the benefits, for which sadly there are consequences.

Exercise for me has always been important, i have been almost excessive over the years and whilst the finer points and benefits are important such as preventing glaucoma, heart and mind, both spiritually and physically are key to me maintaining my spirit.

PMRpro profile image
PMRproAmbassador

The link per se is good - but the advertising plug at the end can safely be ignored!!!

I'm just trying to work out what more exercise can do to combat cataracts and glaucoma ...

in reply toPMRpro

I am working on it, but it can’t do any harm. I wrote a paper years ago about the no longer used term “age related (senile) Macular degeneration and glaucoma” but can’t find the references, plus I only wanted to share to those new to this disease.

TheMoaningViolet profile image
TheMoaningViolet

I am not sure you can stop the cataracts (you can make sure you were sunglasses in sunny weather, but I assume that most cataract surgeries are successful), but you should keep checking your eye pressure for signs of glaucoma. I have my eye pressure checked every 3 months.

SheffieldJane profile image
SheffieldJane

Thanks for the post. I liked the clarity of the explanation and graphics. If only the promises were true ( supplement).

in reply toSheffieldJane

Agreed. But for some, particularly us new to this, I thought could be welcome. Some of us are more visual, unlike me, I am just vocal!

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