Starting prednisone tomorrow: Hi there. I don't... - PMRGCAuk

PMRGCAuk

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Starting prednisone tomorrow

KinnearD
KinnearD

Hi there. I don't think the previous message posted so I'm trying again. As I said, clutching at straws. The doctor has prescribed 3×5mg prednisone for two weeks before we review. My symptoms seem mild compared with some of you si I wondered if there was an problem with starting with just 2x5mg for two days and upping it if I need too. I weigh 146lb. Also if my symptoms lessen should I avoid gym or yoga totally or trial the dosage while doing moderate exercise. I have been fairly active until this struck. Advice keenly sought. Thanks.

42 Replies
oldestnewest

I should start at 3 x 5mg per day as the doctor suggested, don't try to yo yo around, a slow reduction over time normally works much better, you need to knock the PMR on the head. 15mg per day is a normal starting point for PMR, sometimes even 20mg. Don't overdo things and take it easy. If you feel you are OK exercising why not, just stop if you get tired, PMR is very intolerant of exercise and reacts badly if you overdo things. It is important to be sensible.

AndrewT
AndrewT in reply to piglette

I quite agree, do do as the Doctor, has asked you.

KinnearD
KinnearD in reply to AndrewT

Thanks, Idid. 3×5mg prednisone and 1 x monthly Vit D taken as soon as the pharmacy opened this morning. Now watching and waiting. 🤗

AndrewT
AndrewT in reply to KinnearD

My fingers are 'crossed', for you. Good Luck

Hidden
Hidden

As piglet says you need to follow Drs Instructions & take 15mg to see how it works, then when you go for your review he’ll know more by how you’ve responded.

You may have read of people tapering their doses up n down but they are long standing patients some of many years & do it with the approval (in the main) of their Consultant or Doctor.

Take Care & Good Luck

Mrs N 🌺

PS that was exactly the regime prescribed by my Consultant & in 3 days l was a ‘new’ person.

And, exercise at this point is not a great idea, just rest & let the Pred do its magic then discuss a gentle return to exercise when you see your GP in two weeks.

Hello KinnearD -I have to agree with Mrs Nails and Piglette to start at 15mg and to take things easy initially. 20mg of Pred worked a miracle with me within hours, then I went mad exercising so when I went for GP review a few days after, I complained again about painful shoulders/legs etc. I was put up to 40mg daily, neither of us knew any better, soon reducing down but in retrospect it was unnecessary. To be honest the less I did exercise wise , the better I felt in the early days at least. Be kind to yourself.

All good wishes x

Go with the Dr recommendations. Exercise is important so just do what feels comfortable. Don’t push yourself too hard. I do aqua fit 4x a week and did so pre diagnosis although I felt like going back to bed afterwards. Once on the tabs I felt fine after the classes

KinnearD
KinnearD in reply to Bamber99

Thank you. I do tend to manage best with routines and plans so the sudden loss of gym etc in my newly retired state has been hard. I will see how I am over this week but plan at least to get to the pools even if it's just the jaccuzi! So many unknowns.

Bamber99
Bamber99 in reply to KinnearD

I was only diagnosed 3 weeks ago so it’s early for me too. The fatigue went within hours of taking the tabs. The leg pain went the next day. I started on 30mg then 40 now week 3 35. I’m eating food with high vit D and calcium for bone protection. Less carbs than before to help avoid diabetes. Nothing drastic just small manageable changes. I feel a bit hyper but am making myself not do too much for fear of a crash. If you don’t have it already Buy the PMR book on Amazon it’s very helpful . Don’t bother with the PMR diet book, I don’t rate it at all.

HeronNS
HeronNS in reply to Bamber99

I agree about the diet book. I bought it too, and returned it.

Bamber99
Bamber99 in reply to HeronNS

Never thought about returning it. May look into that

piglette
piglette in reply to Bamber99

Has your doctor prescribed vit D and calcium supplements? Also have they offered you a Dexascan?

KinnearD
KinnearD in reply to Bamber99

I bought the kindle version and have now ordered the print book. Hopefully my husband will read that.🙄

piglette
piglette in reply to KinnearD

I found standing under a hot shower was bliss to help the pain in my shoulders. The jacuzzi is a good idea too.

PMRpro
PMRproAmbassador

15mg is the bottom end of the range really and it is advised by the top experts that the starting dose should not be less than 12.5mg. It has little to do with the severity - I had quite bad PMR (had done for 5 years) and 15mg wrought a miracle in under 6 hours while others have had lesser symptoms and needed 20mg. Everybody reacts differently to pred - not everyone absorbs the same amount nor does it have the same effect on them. That is why you should start with 15mg, and add a bit of it isn't enough, and then you taper down to find the lowest dose that is enough to give the same result as the starting dose. You need to know that as your guideline.

For the moment stick to gentle exercise - walking (not too far and not mountain climbing) and I did acqufit at a low level initially. Build up slowly - VERY slowly.Don't rush out and try to catch up as soon as you feel better. The pred is only managing the inflammation and therefore the symptoms it causes - the actual underlying illness, an autoimmune disorder, is still active in the background and attacking the body tissues. This makes your muscles intolerant of acute exercise. They can't tell you you are asking too much of them, you will develop delayed onset muscle soreness which may well be worse than you are used to when exercising and it will probably take much longer to subside as your muscles do not heal as well. That also means they are easier to injure so don't over do things.

I did aquafit 5x a week - but at MY level. Remember, every activity in water requires 7x the effort it does on land. Walking in water is a good start - but joining in at full blast on day 1 will leave you thinking you have relapsed! Build up slowly both in time and intensity and you will be OK. By doing that I could still ski - but it had to be SLOW.

Godrevy1960
Godrevy1960 in reply to PMRpro

Gosh, i found this very useful indeed. I was a fit dog walker until June when i became ill and in August was diagnosed with PMR. Initial dose of 15mg did not work sufficiently and was increased to 20mg which has made a real difference. I was just told by the consultant to listen to my body regarding exercise which is a little vague as i am naturally a very active person. So really learning to adjust and having read this chat i am not feeling so guilty about NOT completing housework or the gardening etc. Thank you

PMRpro
PMRproAmbassador in reply to Godrevy1960

I NEVER feel guilty about not completing the housework. Mainly by never starting it in the first place... ;-)

Good advice from everyone here. Start on your 15mg and see how it affects you.

I was an exercise teacher up until I a couple of years ago when I was diagnosed.

I taught Chi Gong too. I haven't yet been able to get back to any moderate exercise still on gentle such as walking or static cycling. What I will say is even gentle exercise can feel like a work out so take it easy.

The other day hanging the washing out felt like I had been weight training after.

My advice is do little and often but above all do what you can to keep your mobility.

This too will pass. Namaste xxx

Hidden
Hidden

I started on 15mg daily for 4 days to test response. It was dramatic. Pain free and able to walk, get out of bed etc etc with ease. First time in over 2 years. Thought I was cured.

If you're about to embark on the PMR journey, please be warned it's likely to be a bit bumpy and longer than you'd like. It's a constant learning curve. This site is a veritable fount of wisdom and advice; I'm only a couple of months down and I've had to change every early expectation and learn to accept things will be different for some time. But it's easier to work with it, rather than constantly battle against it. Good luck.

I was started on 7.5mg by my eminent rheumatologist, Dr.H. He told me it was better to start on a middle dose rather than a higher one, then it was easier for one to go up or down from there. My GP had originally started me on 15mg. for two weeks - couldn't take it, so I stopped, she then referred me to Rheumatologist to confirm PMR, which he did. He did mention that GP's were inclined to start on doses which were too high.

Jemsea
Jemsea in reply to Jemsea

PS. I am now on 3mg.

PMRpro
PMRproAmbassador in reply to Jemsea

Yes - maybe, but 15mg is not too high for most people. And it IS the dose recommended by all the expert rheumatologists who contributed to the Recommendations. So he is wrong to blame the GPs for doing so!

Jemsea
Jemsea in reply to PMRpro

Maybe, although I thought what he said made a lot of sense, simply because it does make it easier to reduce. Because I am so new to all this, I can really only talk of my own experience, which was I had no difficulty reducing from 7.5mg to 3mg, within 4 months, but now I am stuck, don't seem to be able to get below 3mg.

PMRpro
PMRproAmbassador in reply to Jemsea

That is normal enough - you aren't reducing relentlessly to zero pred unfortunately but looking for the lowest dose that manages the the pain as well as the starting dose did. It sounds as if you have been incredibly lucky in having a low disease activity to start with so the low dose worked to start with. Your maintenance dose might have been 7mg - or it might have been 8mg and if it had been 8mg the 7.5mg wouldn't have worked. Half a mg can make an enormous difference - it may be the difference between freedom from symptoms and not.

3mg is a very low dose and this sort of dose is the ideal - the median time to attaining a 5mg dose is 18 months so you will see how lucky you have been!

Jemsea
Jemsea in reply to PMRpro

As far as PMR goes it does appear I have been lucky when I read what others are going through. I didn't realise there were varying degrees when the illness first starts, other than GCA. I am still feeling inclined to think there could be some other underlying cause since I have had cancer, but then again, could be the new hypochondriac me.

PMRpro
PMRproAmbassador in reply to Jemsea

You might find this interesting

academic.oup.com/rheumatolo...

It is aimed at medics so is a hard read - but Fig 1 has a couple of diagrams which make it quite clear how the different aspects of this sort of vasculitis can overlap. PMR and LVV can cause very similar symptoms but are obviously quite different in degree.

Jemsea
Jemsea in reply to PMRpro

Thank you PMRpro. It does look hard to understand, but I will try. Probably end up thinking I've got the lot!! Last year I had a brain scan (connected with my lung cancer). They should still have the image. Wonder if it might have shown anything. Of course all I was told was my brain scan was okay. Thank heavens. My present PMR symptons are mainly stiff neck and somtimes headache up the back of my head, but it comes and goes, although in the beginning pains were everywhere except my hands and feet.

PMRpro
PMRproAmbassador in reply to Jemsea

It is really the images in Fig 1 that are important - they show how it all overlaps.

You were young for lung cancer. The cancers that tend to cause PMR-type symptoms are other ones and usually caught by the blood tests that they should do in making the differential diagnosis. I wonder if the neck and head pain could be due to tight muscles? That isn't unusual, having left over muscle discomfort once the pred has relieved a lot.

Jemsea
Jemsea in reply to PMRpro

I wish I was young!! I am old PMRpro (most people think I look 20 years younger than my age, so I tend never to give my age ), but believe me, I am old, and I hate it. I also hate the people who say "grow old gracefully"!!! No chance, especially with PMR!! What made you think I was young?

I think the neck pain and stiffness is probably exacerbated by sitting over the computer, playing golf and bad posture, but, uncannily, it disappears about 2pm along with the rest of my stiffness. I began taking my pred at 11pm on Friday evening instead of a.m. and last night also. Last night I made the mistake of taking it with warm almond milk instead of cold water, so the tablets disintegrated before I could swallow them. Funny thing though, my stiffness, plus neck stiffness, disappeared about 2pm as it always seems to. Maybe it needs a week to adjust.

PMRpro
PMRproAmbassador in reply to Jemsea

An attack of pred-brain probably!

HeronNS
HeronNS in reply to Jemsea

It is true that some GPs do start their patients too high - 30 or 40 mg for example - and that really muddies the waters both for a correct diagnosis and for tapering. But, as PMRpro said, 15 is the best initial dose because it will work for most people with PMR (not all) and yet a person who really needed less should have no problems tapering fairly quickly to a lower dose.

One more check in here - I started with 15 mg. Which, by the way, you must take all in one dose with food, and not at the same time as any calcium supplement you may be taking. Within a few hours I thought, "surely it can't be helping already?" On the third morning I got up, was puttering around, and suddenly realized, "I didn't have to plan how to get out of bed!" and was, like the others posting here, "a new person". I didn't taper for about 5 weeks, and then never by more than 1 mg although for the first few weeks it was 1 mg a week. Then at 10 mg, finding 9 mg a step too far, with my doctor's approval I started the dead slow taper and with reductions of 1 mg a month at first, and then .5 mg per month I was down to 3 mg per day by the end of my first year. Some people stick at 5 mg or perhaps even a little higher, for longer but 3 just happened to be my sticking point. Nevertheless for the past two years my dose has been between 1.5 and 2.5 most of the time, and I continue to attempt cautious steps towards getting even lower, unsuccessfully so far.

What you must also understand is that we all metabolize pred a little differently. So what may work for me, because I apparently metabolize pred very effectively, may be too little for someone else who is only getting the benefit of part of the dose. All our experiences described here are meant to encourage you to stick with the doctor's plan, at least at the beginning, but our individual journeys have varied, and you too will find your path and the best way to manage your particular version of this annoyingly idiosyncratic disease!

Purplecrow
Purplecrow in reply to HeronNS

"Annoyingly idiosyncratic disease"!

Well put HeronNS!

KinnearD
KinnearD in reply to HeronNS

Thank you. Useful to hear that I shouldn't take with calcium supplements. My Dr has added a once monthly Vit D. No calcium at this stage rather than suggesting I get it from my diet.

piglette
piglette in reply to KinnearD

It is recommended that vit D tablets including calcium should be taken if you are on pred to help against the possible side effect of osteoporosis. This is in the literature if your doctor checks.

PMRpro
PMRproAmbassador in reply to KinnearD

Some calcium supplement is a good idea - a study found that calcium/vit D supplementation helped avoid loss of bone density in patients on pred - which makes you lose calcium through the urine. Extra available calcium helps the body trap enough - and vit D is essential.

KinnearD
KinnearD in reply to PMRpro

I will mention it again when I see her again probably next Monday. I'm less stiff this afternoon after the first 15mg. Do feel a little more normal mood wise too. Maybe wishful thinking.

HeronNS
HeronNS in reply to KinnearD

Yes, the idea is that we do take a calcium supplement, but at a different time of day than the pred as they interfere with each other. The other thing is, a smaller calcium supplement is probably adequate. I think some people are taking doses like 1000 at a time, and as your body can only absorb about 400 at a time that seems wasteful and can lead to the problems associated with too much calcium. Vitamin K2 (not K1) sends calcium to the bones rather than having it settle on the walls of blood vessels or in organs, which is what your doctor would be concerned about with calcium supplements.

Hidden
Hidden

Another thought KinnearD. You're possibly approaching info overload; there's a lot to take in...

In your situation, July 2018, with a diagnosis and 4 day pred trial ahead, I was overjoyed with the belief that everything would soon be sorted. PMR is a complicated disease. If you pose a question with multiple choice answers, they'll all be correct. In other words, it's not a simple one size fits all in terms of symptoms or treatment. Steroids treat the symptoms. But there's a downside, and on the basis that forewarned is forearmed, if you're offered additional meds to combat some of the recognised risks...(and they are 'risks', you may not be troubled by any) I'd advise you do some further specific research first.

It's daunting to find your life taken over by a complex condition and a long term treatment plan, but it's possible to do what's best for you. Ivediscovered this isn't a forum where people whinge about problems. It's a genuine source of informed support by people who've been there, done that. It's a lifeline.

Hidden
Hidden

I think Astalsurfer was right about overload. So I will simply say Hi and welcome😃

KinnearD
KinnearD in reply to Hidden

Thank you.

Me too KD, you've a lot to take in so welcome for now :) :)

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