Prednisolone tapering and weight loss

[Karendeena]

Here I go again, I'm mega stressed! I am on tapering of prednisolone 1mg every 6 weeks as directed by my Rheumatologist. I went to see the GP today as I am getting more sleep disturbances and jittery, nervousness feelings when I wake up. I have dropped another 3kg in weight since May. Many tests have come back ok but GP is repeating ESR ( I have some shoulder pain but not much)and full blood count etc.I am really stressed looking after my 94 year old mum single handed so not sure if this is adding to my problems. Has anyone else had weight loss when tapering? I have changed some eating patterns and cut out a lot of sugars because of afib and IBS.I am a constant worrier☹️

[PMRpro Ambassador]

Well stopping worrying would be a good start! And yes - I know it is easy for me to say!

What dose are you at - because that could be significant? And maybe you have cut too many carbs and sugars - the idea when you do that is to lose weight but everyone needs different amounts to maintain their weight. And as the pred dose goes down some people do lose weight anyway.

[Karendeena in reply to PMRpro]

Thanks PMRpro (again), I am down to 2mg daily, reduced on 29th June. My GP thinks that when I reduce again(if I don't have to increase depends on bloods), I should alternate between 2mg and 1mg, I would prefer the 1.5 daily by splitting the tablets, what are your thoughts please? She did say that this could be coming from the tapering (and likely the stress) but I am losing strength in my arms too. Never felt like this, I don't feel ill as such just very 'on edge' all the time

[PMRpro Ambassador in reply to Karendeena]

I think all that is typical adrenal insufficiency and personally given your stress situation I wouldn't be going any lower just yet, You might need more pred not less or you risk becoming quite unwell.

You could do with a basal corisol blood test - it gives a basic assessment of adrenal function though it won't show if you are producing more when you need it in response to stress but I would want to know that your adrenal glands are at least producing a decent amount in the mornings - blood needs to be taken before taking your pred for day (not in the previous 24 hours), usually about 9am

[Karendeena in reply to PMRpro]

Thanks PMRpro I will ask for this test 👍

[Karendeena in reply to PMRpro]

Hi PMRpro, just spoken to my GP and apparently they can't get me tested for adrenal insufficiency, it's not something they do in primary care in the UK. The only way I can get this done is through an endocrinologist which she isn't going to refer me to at the moment. Looks like I will have to go privately again ☹️

[PMRpro Ambassador in reply to Karendeena]

No - not the synacthen test - just a simple basal cortisol test, a blood sample taken in the morning, between 9am and 1pm, no specific time, and the cortisol level measured. That gives a simple assessment without going to much trouble. Give them this reference:

ncbi.nlm.nih.gov/pmc/articl...

[Karendeena in reply to PMRpro]

Thanks PMRpro 😊

[tangocharlie in reply to Karendeena]

You can have a 9am cortisol test from your GP, I did

[Twopies]

Yes, I’ve been losing weight since being on pred. Some of it due to muscle wasting, some due to worry, etc. just can’t seem to put it on no matter what. Appetite isn’t very good either, it’s a conundrum, isn’t it?

[Karendeena in reply to Twopies]

Hi Twopies, yes it is! When I first took pred at 15mg I couldn't stop eating and put on loads of weight. My GP tapered me too quickly and the weight just dropped off me and I felt very unwell. I went to see a rheumatologist privately and he put me 5mg daily reducing 1mg every 6 weeks and my weight continues to drop, it's very worrying, then again worry makes the situation worse

[PMRpro Ambassador in reply to Karendeena]

Weight loss is a symptoms of adrenal insufficiency

[Karendeena in reply to PMRpro]

Thanks again PmRpro, I'm definitely going to ask for this test

[Karendeena in reply to PMRpro]

PMRpro, just as a matter of interest, how do we recover from adrenal insufficiency? Is this something else that needs medication? I have the afib and take meds for that, now I have PMR and take meds for that....I am getting scared. I was always healthy and happy, now all I think about is dying, how bad is that! Ruining my life 😢

[PMRpro Ambassador in reply to Karendeena]

Patience! And not enough pred to stop the body knowing it needs to wake up.

When you take pred above about 7mg/day, the body knows there is enough corticosteroid in the body for the day to day housekeeping - it is needed for the body to work properly - so stops producing its own. As the dose of pred goes down, the body must start to produce its own natural steroid, cortisol. The only thing that encourages the body to do that is taking a lower dose of pred and waiting for the adrenal glands to wake up which can take quite a while depending on how long you have been on higher pred. So no, not necessarily more medication so don't worry.

I have afib too - the PMR caused mine. I don't mind my pills - they all improve my quality of life. And very interestingly - since I have started Actemra, the afib is MUCH quieter!

[Karendeena in reply to PMRpro]

I am not alone PMRpro that makes me feel better, thank you! What is Actemra?

[PMRpro Ambassador in reply to Karendeena]

The brand name of only biologic drug that is approved for use in GCA to reduce the amount of pred required. Lot of info on the forum - also called tocilizumab.

[tangocharlie in reply to Karendeena]

That strange feeling of 'impending doom' is also a sign of adrenal problems

[Maisie1958 in reply to tangocharlie]

I remember that truly awful feeling. I’m usually a sunny optimist. How physical problems show in your mental state.

[tangocharlie in reply to Maisie1958]

I really felt I was going to keel over and die. I possibly was, maybe it was intuition, luckily I sought help. verywellmind.com/sense-of-i...

[Maisie1958 in reply to tangocharlie]

I can’t “like” this tangocharlie but certainly empathy. I really felt if I didn’t concentrate something awful was going to happen-as much to my loved ones as me but also a dread I couldn’t actually do anything to stop it. Doesn’t makes sense but back then I knew I wasn’t being rational anyway. That was when I reduced to 3mg Pred daily and was having periods of low BP etc and thanks to this wonderful forum I kind of realised what was going on- I even went to my GP as was feeling so odd and lightheaded- she was v nice but just told me to drink more water! I’m pleased I discovered you all here. All good wishes x

[tangocharlie in reply to Maisie1958]

Yes this forum probably saved our lives as it's the only way I'd have known about adrenal problems. My GP knew absolutely zilch about adrenals either, I had to bypass her and went direct to my rheumatologist for help

[tangocharlie in reply to PMRpro]

I remember I lost nearly 3/4 stone in a week when going from to 4mg a few years ago. I was delighted and thought yes, at last, yippee, but it was adrenal problems

[Flivoless in reply to Karendeena]

I piled on weight with Pred although not initially. Heavily changed my diet to low carb and my weight seemed to stop increasing but didn't decrease either (after six months). Now down to 8.5 Pred but still no signs of the weight shifting despite maintaining low carbs and now being able to exercise more.

[lalar in reply to Flivoless]

I am there too.....I wonder what you have to get the pred to before the weight stops😔

[PMRpro Ambassador in reply to lalar]

You can usually limit the weight gain with pred by cutting carbs drastically - and that works at any dose. You almost always have to be proactive and do your bit.

[Flivoless in reply to lalar]

It may not be a problem for too much longer. The way food prices are going we won't be able to afford to eat.

[piglette]

I am so sorry you are stressed. Have you thought about self hypnosis, mindfulness, yoga etc. … to help? Just a few minutes of ME time might really help.

[Karendeena in reply to piglette]

Thanks Piglette, I am going to really try my stress levels have been through the roof with trying to look after mum as well as work and having a life! I just can't seem to relax my mind. Seriously thinking of joining a spa

[piglette in reply to Karendeena]

I have just been to my Spa. Swam a few lengths then sat down to coffee with a ciabatta and read the paper. The only excitement was some woman had been stung by a bee. Really relaxing.

[Poshdog in reply to Karendeena]

So know that feeling. I sit by river, watch swans and ducks while I eat chocolate ice cream! Try to avoid anything which has need for a watch to check time. Good luck

[Meggsy]

I lost 8 kilos last year for no apparent reason. I was getting worried but it seems to have stabilised. I’m now the weight of my youth but a different shape - more saggy with pendulous bits and pieces. ☺️

[Karendeena in reply to Meggsy]

That's me Meggsy, my lovely skin has gone crepey 😢

[Thelmarina]

That’s mean! 😀

[larkthebark]

only a thought but has the doctor checked your thyroid function ?

[PMR2011 in reply to larkthebark]

Agreed, partway through my journey I lost a lot of weight, was jittery a lot, couldn’t sleep. Turned out I was very hyperthyroid. Probably due to the autoimmune activity in my body since it was soon after that I was diagnosed with GCA. Once that was under control the hyperthyroid ended up resolving and I came off the meds for that. No problems since. It lasted about 2 years.

[Gilmor]

HiI recently lost 4 kgs almost over night (but probably over a week), was somewhat worried so had some tests that showed nothing. Think it was fluids, now back to my ”starting” weight. This happened after tapering down to 6 mg

[carport]

I lost half a stone in about two weeks when the GP got me to drop from 7mg to 6mg after 3 weeks and then to 5mg 3 weeks later felt really unwell tried increasing to 5.5 mg but did not help then GP agreed back up to 7 mg GP requested advise from the Rheumatology department but I ended up within two weeks having a CT scan, loads of blood tests and seeing the rheumatologist who gave me a real going over including ultra scan checking for GCA. From then on told to only drop 0.5 mg every 4 weeks until reached 6 mg when reviewed again. Was supposed to have a basal cortisol test but the nurse messed up and forgot about me and not received a review date from Rheumatology which was supposed to be after the test. Now doing my own thing with a slow taper and will be fully on 4.5 mg by the end of the month. Try not to worry as does not help but sometimes easier said than done. Take care.

[herdysheep]

I lost quite a lot of weight in relatively short period. Plenty of tests - nothing. Hadn't really put weight on since starting pred., but seems to have been loss of muscle mass. Now stable. Almost back to fighting weight of 40 years ago but none of the strength or energy of then of course!