Dosage level to avoid side effects: Has anyone... - PMRGCAuk

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Dosage level to avoid side effects

weymouthgran profile image
8 Replies

Has anyone found a rough guide as to the level of steroid dosage which would avoid the worst of the side effects? Does it depend on body weight as well as the length of time taking them. I'm 5'2" and around 8st 9lb - no weight gain after one month.

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weymouthgran profile image
weymouthgran
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8 Replies
steph1 profile image
steph1

from what ive been told every body is different but ur lucky if u havnt put on any weight yet, i wish i could say the same i was put on steriods and within a mouth i had put on tover two stone , i have been reducing the steriods for seval months but no weight loss yet , im now 8mg . wot dose are u on ?

steph

weymouthgran profile image
weymouthgran

Started on 15mg, reduced to 10mg (though may have to go to 12.5mg) as I'm a bit stiff again. Have been pretty careful to control calorie intake.

Celtic profile image
CelticPMRGCAuk volunteer

Hello weymouthgran

My rheumy advised that once on doses of 7.5 and below there is very little risk of side effects. HOWEVER, don't be in a rush to get down to that dose - to do so will almost certainly lead to a flare and result in you having to increase the dose, thereby taking a higher cumulative dose overall.

Pipistrelle profile image
Pipistrelle

I never had any weight gain or significant side effects; these do happen to some people but by no means all, and they can vary greatly by person.

The main concern is to take the right amount of prednisone needed for managing your PMR, not try to take only what is hoped might avoid side effects. This is absolutely critical -- we all gradually drop down in dosage but if this is done too quickly or we start on too low a dose, we are almost guaranteed to have bad symptom flares that can only be addressed by raising the dose and generally, taking even LONGER on prednisone!

The rheumatologist guiidelines are a starting dose of on average 15-20mg and gradually tapering. Most of us will be on this drug for two years, some a little less, some a little more.

Pipistrelle profile image
Pipistrelle

A 15mg to 10 mg drop is WAAAAAAYYYYYY to big!!! Are you working with a rheumatologist and getting correct tapering advice? I would not stay at 10mg or you are almost certainly going to need to go back up to 15mg. At most, the drop should have been to 12.5 and some would have difficult even with that. I would really advise working acrefully with your rheumy as I know you will not want to endure this condition for even longer than is necessary but these kinds of drops are going to cause problems, almost certainly (that is why you are hurting again almost immediately).

weymouthgran profile image
weymouthgran

Thanks to both - yes, I realise I've been rather too gung-ho. My doc is v helpful , but I don't have a consultant appt until May 15th. I have found some medical sites which suggest 15mg for 3 weeks and then 10mg, which is why I tried it. Obviously not a very good idea. Going to have to learn patience - never has been my strong point!

meggies profile image
meggies

Weymouthgran, 'I have found some medical sites which suggest 15mg for 3 weeks and then 10mg, which is why I tried it'. I don't think you will find any of the 'top bods' recommending that sort of reduction - might work for asthma, not PMR. The Bristol Rheumatology Dept under Professor Kirwan, recommends 15mg for 6 weeks, 12.5 mg for 6 weeks, then 10mg daily for a year then reduce 1mg per month after. This results in a lower relapse rate (after 2 years) of 20% compared with 60% for faster menthods.

I know I was concerned about weight gain initially & I have put weight on. I quickly realised that this is a small price to pay and it will go away when I eventually come off the steroids. Pre steroids and when I've had ,flares', I am unable to walk/get out of bed without help, so a fat face & weight gain is really nothing in the 'big picture'. You may be one of the luckier ones that doesn't put on weight anyway. As much as we all want to get off steroids as quickly as posiible, it is not worth increasing the risk of GCA, flares and other nasty implications of leaving an inflammatory disease untreated. Both research and the experiences of numerous people on the PMR/GCA forum show that it is the 'tortoise not the hare' that wins the PMR race.,

weymouthgran profile image
weymouthgran

Thanks for that - I will note that schedule and discuss with doc and consultant before getting too impatient.

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