Prednisolone dosage : Hi all , I want to get back... - PMRGCAuk

PMRGCAuk

13,029 members23,632 posts

Prednisolone dosage

Rottsuzi
Rottsuzi

Hi all , I want to get back to working out as I have put on about a stone and half on prednisolone but if I do workout my neck starts to hurt and the next day I feel like I’ve been hit by a bus , I’m on 6mg at the moment and can’t seem to move down do you think maybe it’s still too low a dosage ?

34 Replies

Hi, Rottuzi. One of the most important things you must do when you have PMR is not to over-exert yourself. If you feel as though you've been hit by a bus after exercising you are doing yourself a great disservice by stressing your body. You really need to greatly reduce your exercise regime. The idea is to lower inflammation on your body, not build it. This is not what you want to hear but you must listen to your body. It's not surprising that you're unable to reduce below 6mg Pred.

You will enjoy likely to lose weight if you follow a low-carb diet, cut out sugary food and drinks and processed foods. Plenty of green veg, some fruit, chicken, oily fish like salmon and sardines and cooking with good quality olive oil is a good start. Stay within the guidelines for alcohol intake.

I don't mean to be harsh but you do need to be rudely awakened! 😏

Rottsuzi
Rottsuzi in reply to 123-go

I need to try find a balance but honestly with not ever seen a rheumatologist or had any proper advice only from my GP I feel like I’m totally winging things myself , I have always exercised and eat healthy do not drink much at all my bad habit is tea with sugar and do like pasta so definitely will try the low carb diet . Thank you👍

123-go
123-go in reply to Rottsuzi

You're between a rock and a hard place and have my sympathy. Now that you've found this forum you are in good hands. Any advice or suggestions given here are based on people's own experience and research and you will receive sound guidance. It's your GP's job to listen to you and work with you, but it may be that he/she isn't familiar with PMR (as many have found) so should be referring you to a rheumatologist who is more knowledgable: you can ask for a referral. Present times are difficult regarding appointments but telephone consultations are more than possible and I would urge you to seek a discussion with your GP. Others here have been in similar situations regarding confusion as to how to move forward and will say that advocating for yourself (politely and respectfully) brings promising results. I wish you well and hope that with the help of trusted members and professional help you'll soon be on a more structured path. 🙂

Rottsuzi
Rottsuzi in reply to 123-go

Thank you for all the advice x

Devoid
Devoid in reply to Rottsuzi

Hi I was advised by the rheumatology nurse to do Mediterranean diet, just didn’t work at all, low carbs and I’ve lost 23 pounds which is more than I put on,so now getting off the extra weight I was carrying before I became ill. As others have said exercise to your present ability, I found that if I pushed myself the next day I was incapable of doing anything, so in smaller chunks and see how you are the next day before increasing what you are doing 😊

Rottsuzi
Rottsuzi in reply to Devoid

Hi that’s fab definitely sounds like that’s the best way to go my daughter done keto and thought it was good so will definitely try it .

Devoid
Devoid in reply to Rottsuzi

Hi I haven’t needed to go as low as keto and not sure how sustainable it is. Have found roasted cauliflower a good substitute for potatoes, rice and pasta so then meals are easy to do for the family

Rottsuzi
Rottsuzi in reply to Devoid

Hi will give it a try , bread is my downfall 🤦‍♀️😩

Hi Rottsuzi. Firstly, more informed people will eventually be along to advise you more fully, but in the meantime. I see from your profile that you're 49yrs old and clearly feeling a bit low.

Yes....at 49yrs old you are one of the younger sufferers of this condition but it's becoming increasingly more evident that it isn't always a disease of 'the elderly' and more and more younger people are being diagnosed with it.

I think to advise you fully, people will need to know a bit more about your situation....ie. how long you've been on current dose of pred, starting dose, etc.

I know you'll probably be told that if your current dose isn't relieving any of the pain, that you may need to increase the dose....but only if you're sure the onset of the neck pain is PMR-related and couldn't be something else.

It's SO important that when you decide to start any form of exercise, that you DON'T do more than your body is capable of. If it brings on the amount of pain you described then you're doing too much! There are still ways to lose weight without intense exercise. (others will provide info on low carb diet..... very effective and much safer than too much exercise) and if you're going to engage in exercise at all, make sure it's slow, gentle and within your body's capability! I have a walk every day, do some gentle hand weight exercises and practise gentle yoga daily...... specifically designed for people with osteoporosis, as I also suffer from that. However, I constantly 'tweak' my exercise to suit how I'm feeling on the day.....Sometimes I need to do less than usual, and very occasionally I don't do any at all if I'm particularly unwell. Any exercise you decide to do, should not leave you in so much pain afterwards, and as frustrating as it is to have gained weight, it will be far more frustrating to have to keep increasing the pred because your exercise regime is causing 'flares'. Our condition can....and frequently does......improve and eventually burn itself out, but it's a journey of longevity and patience. You can't speed the process up.

I know with the good advice of others here, you WILL be able to lose some weight, but it's not going to happen overnight!

Try to remember that you're not alone in this journey, as all of us on this forum have either experienced what you're experiencing right now, or at least understand the emotional upheaval it's causing you. For that reason alone, I know you'll be well supported here and you'll receive the help and advice you need to overcome these concerns.

Things sometimes can feel a bit bleak, when it seems you've hit a brick wall and can't overcome the problems encountered, but for every problem, there will always be a resolution so try to remember that on those days when you'refeelinga bit low.

Rottsuzi
Rottsuzi in reply to Kendrew

I started on 15mg prednisolone around October 2019 I did taper down too quickly to2 and had to go back up to 10 so this is me now tapered to 6 I know I am pushing myself too quickly trying to get off the prednisolone and I need to accept things more , I’m so happy I found this its great to hear all the advice on here so grateful or I would be right in the dark 😘

Kendrew
Kendrew in reply to Rottsuzi

I think most of us felt like you initially with regard to tapering down off pred asap....see my profile!! So you're definitely not alone there!Yes!......"acceptance " is the key word! Once you engage with that, the journey becomes a whole lot easier.

Blossom20
Blossom20 in reply to Kendrew

I know you're right 'acceptance' is the key. But it's so hard, I just can't. Everything is so bleak at the moment with Pmr, Covid, worry....my default method is to comfort eat! And I also love exercise - it makes me feel good. So accepting a life of restrictive foods and not allowed to exercise much is not great! I am trying though! Thanks for your and everyone's constructive advice x

PMRpro
PMRproAmbassador in reply to Blossom20

Try looking at it as what you CAN eat - I don't find my diet in the least restrictive but I did have a headstart being allergic to wheat and that immediately makes the vast majority of backed items off-limits anyway. I don't refuse to eat carbs - but they are treats, for special occasions. There are so many lovely foods out there that aren't carbs - some are maybe a bit expensive for regular use, but not spending on the carbs mountain leaves some spare for the other stuff.

Kendrew
Kendrew in reply to Blossom20

Hi Blossom20.I truly understand how you're feeling and the dilemma you're facing. I can't tell you what to do, but I can tell you that there will be increasing consequences with increasing weight gain. If you exercise beyond your body's capability, your PMR will escalate and then your pred will have to increase. If your pred increases and you continue to 'comfort eat' then the weight will increase and you'll be significantly more at risk of developing diabetes, high blood pressure and other secondary health issues........ you'll then be entering life-changing territory!!

All I can advise, is that you try to find something else other than food, to provide that same uplifting feeling when you're needing a boost. Whatever you think, you DO have control over this, and it's about choice.......you have a choice to do the right thing. It's definitely not easy, but if you don't at least try, then you'll be in a far worse place in a few months time. People are here to help and support you, so please don't feel despondent.......you can definitely do this so maybe give yourself this week to get in the right mindset.....eat what you want (within reason) and then come Monday.....go for it!!

Blossom20
Blossom20 in reply to Kendrew

Yes I know! All true. So depressing. But thanks for replying!

PMRpro
PMRproAmbassador

I think it is more likely to be due to "working out" - you may want to get back to it but PMR and its effects on your muscles and soft tissues are the boss. It isn't gone away, you are just on enough pred to manage the symptoms (if you are) and the underlying illness is chugging away in the background making muscles intolerant of acute exercise.

You have already had the low carb approach recommended - far more likely to lose weight that way than by exercising. Studies have shown that relying on exercise to lose weight doesn't work - although if you do the right sort it should result in tighter muscles and lost inches. I lost 35lbs of PMR and pred weight by cutting carbs - I couldn't do much exercise for the first 9 months as I was on crutches!

I can't find the study - but this article explains it in much easier language:

theguardian.com/lifeandstyl...

and I find this site explains low carb well and in an easy to remember way - the pictures of what is good and not so good to eat are so helpful:

dietdoctor.com/low-carb

You don't need to join anything if you don't want to - you need to learn the principles and apply them to your usual diet which will make it easier to stick to. There are loads of recipes on the internet - don't even need a cook book. I also found some good ones on the Michael Mosely Fast 800 calories site

thefast800.com/articles-and...

Acceptance is key. This is life changing in that you really do have to go at a pace that your body dictates, not the other way round which is what most of us are accustomed to. Your musculoskeletal parts have had a double whammy of autoimmune activity and then Pred. It isn’t a case of once you get off Pred you carry on as you were. You need to build up with walking first and I had to do weights type exercises with no weights, just the movements, then wait two days to see if there is fall out.

I didn’t put on weight even starting at 60mg by having a diet that excludes pasta, bread, flours, rice, potato, sugar and maize. Root veg was taken in small amounts and not every day. I also had very low salt in the higher dose days until I was at about 5mg. Others have done the same, even reversing weight gain and high blood sugars while still on Pred. I stuffed my face but not with carbs and enjoyed lots of veg, berries protein and oils which help to feel full. I did have two small glasses of wine a week and two pieces of high cocoa choc. On zero Pred for GCA I still don’t bother with carbs as it is a way off life but I do have weekly chips and a few more squares of choc as desert.

Don’t feel too much like you’ve missed out on advice, this area of care is hardly ever addressed by the docs for some strange reason, especially when they are so worried about diabetes and Pred.

You will get there but it helps to stop trying with old methods and accept that your body needs to take the controls a bit more which is probably been a long time coming knowing most people.

Rottsuzi
Rottsuzi in reply to SnazzyD

Thank you all so much I am fed up feeling so wiped out all the time but definitely going to star with a change of diet x

Kendrew
Kendrew in reply to Rottsuzi

I understand completely the frustration of constantly feeling fatigued. I now accept its part of my life at the moment and adjust things accordingly. I also try and remember that this is not a life-threatening condition and 'inconvenient' as it is, I have a good chance of recovering....as long as I do all the right things and heed the reliable and trustworthy advice here! We still have much to feel blessed about if we look hard enough. ❤❤

You are very likely coming into the dose range where the adrenal function needs to make up the shortfall in the artificial steroid you’ve been taking.if your adrenal glands aren’t up to speed, which is likely, it can make you feel wiped out, fluey achey amongst others. This is why from now your reductions need to be small over longer periods. Do search adrenal on this site as much has been written about it. Also, it is wise to know about adrenal crisis when for whatever reason your body’s requirements during physical and emotional stress or illness completely outstrips what cortisol you can manufacture. It will be under secondary adrenal insufficiency. Many find this bit the hardest going so slowly does it while you find out how ready to come out of hibernation your adrenal glands are.

Rottsuzi
Rottsuzi in reply to SnazzyD

Hi snazzyD , I am getting flu feelings and my feet feel funny (hard to explain) so you think maybe 6mg is too low ?

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to Rottsuzi

Would say probably at the moment - but also compounded by your exercise regime which as been addressed so won’t add anything.

You could try increasing Pred for a week or two to see if that helps - sometimes just a small increase makes a world of difference. Try 7.5mg initially - if that doesn’t work, then

maybe you will need 10mg.

Whatever it needs, get things under control, then down to 7mg, and reduce as suggested by PMRpro - and maybe have a read of this - general info - albeit you’re not that new -

healthunlocked.com/pmrgcauk...

And maybe a look at this - serenityrecovery.org/accept...

Rottsuzi
Rottsuzi in reply to DorsetLady

Thank you x

SnazzyD
SnazzyD in reply to Rottsuzi

Well, the trouble is you’ve thrashed your body a bit so need to recover properly with gentle movement. Once recovered you can then work out what is likely adrenal function being slow and what is a return of PMR symptoms. Before you decided to go back to this exercise, how were you doing?

Rottsuzi
Rottsuzi in reply to SnazzyD

Not great to be honest I don’t feel I have much energy and my body feels stiff and odd days feel like I’m getting a flu but feel I’m dammed if I don’t work out and damned if I do , I think reading all the advice I may be on too low a dose especially as I’m still feeling the stiffness and feel like If i do one thing then I’m sore .

SnazzyD
SnazzyD in reply to Rottsuzi

What has your doc advised? At what dose did you feel ok?

The most important thing with this is that you can’t power through with determination if that involves lots of sweat or what you used to do. I was very fit at 54 when GCA struck and before if I got a bit out of condition I just went for it and got back up. Not so with this. You also risk tendon damage which can creep on insidiously. It has taken me two years to get back into walking boots from hobbling around due to severe Achilles tendinopathy.

In the absence of medical guidance what about follow DL’s advice with going up? Wait for a week or two for your muscles to recover. Then decide if your PMR is actually under control and not just strain from over exercising. If it is ok, consider reducing really slowly. So from 10mg I reduced 0.5mg every 6-8 weeks. 7-5mg was the hardest because the Pred was still enough to make the adrenal glands think they didn’t need to work but not enough for much demand on the body. As I had no disease symptoms I carried on reducing even though I felt rubbish. By this I don’t mean changing to the new dose in one go but introducing it into the old dose regime over about 6 weeks and then having two clear weeks of 100% of the new dose. Even then down to 5mg I felt pretty rough with fatigue, mood swings and general aches as I’ve said. This meant doing very little, having afternoon naps again. A trip to the supermarket was exhausting, though not everyone gets this. However, it is a common complaint from people that fatigue and weakness came back when they were expecting low doses and business as usual. and I lost a summer but once my adrenal function came back I had more good days which became more numerous. Once I got to 3mg I had to take about 10-14 weeks introducing the next 0.5mg step down. If at any point you start to get increasing nausea, kidney pain, severe fatigue, sweats stop and seek advice. A couple of times I completely over did it (one involving a very stupid mountain walk) at doses under 2mg I collapsed and needed extra Pred for the day. It felt like low blood sugar but some choc didn’t help.

I know this has gone on but I’m trying to get across that there is still a lot of management to do to try and get you to avoid having your eye on zero and supposedly back to normal.

Rottsuzi
Rottsuzi in reply to SnazzyD

Sorry to hear all this definitely sound like you went through it but have it under control now , can I ask you what is it if you feel kidney pain ?

SnazzyD
SnazzyD in reply to Rottsuzi

Less having it under control but more letting things settle at their own speed and that’s the tedious bit. As PMRPro says, you have to go through some level of too little cortisol because if you don’t the adrenals don’t think they need to work. It’s a kind of slow cold turkey. One thing that needs to be clarified is that really the bit that has been in hibernation is the bit in the brain that triggers the adrenal glands with certain hormones. You are trying to get the brain to realise the tank is low and shoit at the adrenal glands that lie on top of the kidneys. Kidney pain (flank pain) is just one possible symptom when there isn’t enough cortisol (the natural steroid) and/or cortisone (the synthetic steroid) to keep things going. There are other causes of flank pain eg infection but I found by the time I got flank pain I had other symptoms as well.

Have a read of this but don’t forget this is secondary insufficiency (due to Pred) not primary (due to disease) called Addison’s but the symptoms are much the same.

endocrinology.org/media/176...

If you insist on not going back up, at least let your body recover for a couple of weeks from the exercise. You need to get rid of that clouding the issue.

Rottsuzi
Rottsuzi in reply to SnazzyD

Great information thank you so much I definitely will rest and see how I feel , it feels good to get more insight into what we are actually dealing with 🙏

PMRpro
PMRproAmbassador in reply to Rottsuzi

Just remember it HAS to be a bit low to poke the adrenal function into life. Going back to a higher dose may make you feel better but it is just postponing the process.

And the fatigue part has to be managed by you with pacing and lifestyle changes:

healthunlocked.com/pmrgcauk......

read all the links ...

Rottsuzi
Rottsuzi in reply to PMRpro

Hi so stay at 6 or you think try 7I’m not in severe pain but definitely can feel it and do think I’m trying to manage it without going back up but is that the problem 🤦‍♀️

PMRpro
PMRproAmbassador in reply to Rottsuzi

It is difficult to say - you probably have the stiffness from trying to do too much clouding the picture. If it were me I'd go back to 7mg and see how that made me feel. If you feel better in terms of the fluey feeling (a common sign of too low a dose for the PMR) then try a VERY slow reduciton back to 6mg, 1/2mg at a time and spread over a few weeks with one of the slow taper approaches. If that works OK you have your answer. But first you will need to recover from the muscle soreness/tiredness from too much exercise. Try then to avoid that - it just confuses what you are trying to do because more activity also demands some adrenal input.

Rottsuzi
Rottsuzi in reply to PMRpro

Thank you so much going to try it , sorry I feel like I’ve ranted on all day xx

PMRpro
PMRproAmbassador in reply to Rottsuzi

As long as you feel better -that's all that matters :)

You may also like...