Prednisolone is a serious med. Don't vary the dose without professional advice from a Doctor.

See a doctor first whatever you do.

[Seacat30]

Hmmm - not always? If I feel an adrenal crisis coming on due to my Rheumatologist's instructions to reduce my prednisolone dosage quite fast I intend to take some extra pills rather than collapse while waiting for a medic to get back to me.

[HeronNS]

What has brought this on? Once you're on your PMR journey you are more likely to know what level of pred you need than any other person, including a doctor. I do agree if you are suffering and need a greatly increased dose you do need to check in with the doctor, but as Seacat said, sometimes an emergency means you can't wait the days, weeks, months or even the hours, to see a doctor, especially since the pandemic has made it so difficult to get any kind of medical care in a timely way.

[DorsetLady PMRGCAuk volunteer]

I think we all know that Pred is a serious medication, and we are not likely to vary it on a whim.

Many have been advised by their doctors that they can adjust their meds, and to be honest are more likely to cause themselves less harm that doctors who follow the text book than treat the individual.

It sounds as if you have more issues than PMR, if so, do hope you can get them sorted.

[PMRpro Ambassador]

Shall we just say there are a few people here who would be blind if they had waited 3 or 4 weeks for a GP appointment. Or have been in ICU with an adrenal crisis which is potentially fatal.

[Hidden in reply to PMRpro]

I thought I was going blind and upped my prednisone from 5mg to 15mg for one day then the next day to 10mg. The rheumatologist I saw has made a point of letting my lovely Doctor know and I feel humiliated.

My Doctor surgery was closed for the weekend so I self medicated.

I learn more here than at my first ever rheumatologist appointment

[SnazzyD]

I quite agree, but it’s not as simple as that is it? In a well funded health care system, with rapid, clear channels of communication to knowledgeable, up to date, respectful clinicians, it would be easy. Some people aren’t even able to access one or two of those, even before Covid. Many patients here have been given the green light to sensibly adjust their dose and need a bit of guidance from those who have been there. Some have risked high cumulative doses because of the lack of access causing yo-yo dosing. Others have needed urgent decisions but hadn’t realised but were told here to act and get seen by whatever means possible. Yes, Pred is a serious drug so why are patients left high and dry?

[piglette]

I am not sure that advise would go down well with my doctor.

[Seacat30]

I don't actually recall either my GP or the first Rheumatologist who saw me telling me that prednisolone was a particularly serious medication. I was given a set of standard NICE taper instructions (15mg, 12.5mg, 10 mg, then 1 mg per month) with my prescription. I found the rest out by reading the leaflet in the pred pack and consulting Dr Google.

[SheffieldJane]

Have you had a bad experience Bobskye?

You ought to seek medical treatment for the persistent depression, we don’t have to put up with that. The fatigue goes hand in hand with most autoimmune diseases, including ours. Build a strict afternoon nap into your routine and stick to it. I find listening to podcasts or an audio book sends me off quite quickly.

[Bcol]

Hi, yes, I would agree to a certain extent. I would also agree that Pred is an extremely powerful drug. However, PMR is a very individual ailment (see other posts regarding this description) and there are many here, long term and shorter term sufferers, whose doctors have agreed that they know their bodies, and its requirements better than they do. Your initial dose of Pred didn't "cure" PMR, nothing does, it just controlled it until, hopefully, it burns out. Maybe two (statisticaly unlikely), three, four, five -keep going -years. If your pain and mobility problems have gone and you still have other issues then you need to have further talks with your doctor.

[Kaaswinkel72]

i suspect Bobskye is trying to sertously stirr us up and quite frankly does nt deserve the attention he is craving for and succeeding to get.

[DorsetLady PMRGCAuk volunteer in reply to Kaaswinkel72]

That’s as may be, but as profile states he suffers from depression one can never be sure…..and you don’t have to engage if you don’t wish to, but others may want to reply.

[Kendrew in reply to Kaaswinkel72]

You may be correct, but everyone who asks for advice on here is offered and afforded the same due respect and consideration unless genuine evidence suggests otherwise. I don't feel we should assume anything because we may be wrong!

[Blearyeyed]

Yes , Steroids are serious medications.And yes. you should always seek appropriate guidelines and advice about the safest , recommended way to change your dose and let your doctor know , or seek their approval , for a change in dose as soon as possible.

And most importantly, you should NEVER just stop taking a steroid medication , as this can cause an adrenal crisis and a medical emergency . If you have severe side effects on initial doses such as allergic reactions , or begin to have serious psychosis or physical symptoms after starting steroids you should contact your emergency services helpline or go to A and E for immediate assistance.

However , on some occasions in an emergency or with a flare , your GP is not always available or able to give you the immediate advice you require which is why professionally approved guidelines about an increase in dose called " Emergency " or " Sick Day Rules" were created to give both doctors and patients the safest advice on managing your condition and steroid dose in case of a flare in your condition.

On this forum these are the guidelines that are recommended by forum users and our Ambassadors whom are all patient experience experts . Any advice or recommendations people give here , is just that advice , and it is always considered carefully and telling your GP about your choice is strongly advised.

It is also worth pointing out that on many occasions the advice here is not to increase your steroids until you are sure that other causes for an increase in symptoms have been ruled out , and other options like rest and paracetamol have been tried intially. In the case of GCA flare symptoms we always recommend that you contact your GP or go to A and E to get the right help asap. Moreover , we advise against people increasing their dose above the recommended increase in Sick Day rules advice which some people have often stated they were considering. We also do not recommend anyone taking a dose above that which they were originally given at the start of their treatment without contacting a GP and getting approval or supervision of that level of increase.

It's also worth remembering at this point that all medications are serious , not just prescribed ones , and that also includes things like herbal alternatives and over the counter supplements.

People should also receive advice about these products and double check that they can be taken at the same time as other medications, or with certain health conditions , as these can also cause health issues or reduce how well your medications work if you take ones that interact with each other.

Too often , people see products on the internet or on sale in health shops and just assume because they are recommended or you can just buy them that this means they must be safe to use by everyone , or safe to use in high doses. but this isn't the case . This is why on this forum we recommend you check about interactions that could happen between alternative medicine or supplements and your prescribed meds before you buy or take them too.

You should always tell your GP what supplements you use or remind a doctor which medications you are on before starting a new drug to prevent serious side effects or accidental emergencies caused by the interactions between things you are taking.

I hope you haven't had a bad experience with changing your steroid medications. Perhaps you could tell us more about your recent experience as I'm sure the forum would love to give you some emotional support for that , point you in the right direction to the recommended guidelines if you wish to read them , or help you with some natural Self Care techniques to help in your recovery. Take care , Bee

[Miacaro45]

I showed my rheumatologist the slow tapering plan he said I could proceed on my own. If any problems arise, just call him.

[SusanEleven in reply to Miacaro45]

Same here. My rheumatologist agreed as well and said to let her know what strength pills I’d need for the slow taper. She offers a slow plan now as an option for patients.

[borednow]

Since my original diagnosis 5 years ago, my GP has issued repeat prescriptions for preds with gay abandon. I have now weaned myself down to 1.5 (with the odd flare) and when I managed to get an appointment with my GP last week (I was astounded) he congratulated me on handling the whole thing myself. Said I had done really well. So make of that what you want!!!

[Ruins67]

While that is very good and sound advice there are times when a doctor is not available. For some in various parts of this country, it’s almost impossible to speak to a doctor now. I’m lucky I can usually get hold of someone or if I go online I get a phone call the following day. However, when I had a flareup over Christmas everything was shut down for a week. So using common sense and having been on this website. I upped my dosage from 2 to 4mg. Some people said I could’ve upped it quite higher but I was able to cope on 4MG.

I’d also like to add that I’ve only ever seen a rheumatologist once. Never been offered a bone scan. Haven’t seen my rheumatologist since initial diagnosis from the hospital where I came away with a schedule of reduction of dosage. Schedule was all very fine as long as I didn’t get flareup. With an NHS in crisis, strikes and incredibly busy GPs I’m thankful to be able to go on this website and find good suggestions that sounds sensible and not over the top.

[Flivoless]

Read enough of the postings on here and you will find that. in the main, the medical profession's knowledge of PMR/GCA is not what it should be.

[Meggie22]

My rheumatologist actually wrote to my GP stating that if I (the patient) requested an increase in prednisolone they they were to prescribe them as I was much more likely to under-dose than overdose. I did eventually become free of the prednisolone after about 3 years, using the slow methods recommended on this site, for which I was certainly grateful.

[Bramble2000]

If I got in touch with my GP every time I adjusted any of my meds, I’d have to move in!

[HeronNS in reply to Bramble2000]

My prescription actually now states "variable dose according to response of rheumatic condition"!

[PMR2011]

just like a diabetic is able to self adjust insulin based on predetermined guidelines, symptoms, food intake and blood sugar. I see the Pred adjustments with there long term diseases as similar. I echo what others have said. Luckily my docs let me get on with it as they know I don’t want to be on meds, I am very knowledgeable about my disease and meds and own body. Trust me, as a nurse of 40 years I know there is a wide range of physician knowledge, manner and even interest in practice. I hope you get the full support you look for from your medics!