Steriods - Short term relief

JONNYFRESH

I was diagnosed with RA 2 years back and and currently using both Humira and Methotrexate in an attempt to keep symptoms at bay..
I still struggle daily with aching limbs and joints which is compounded with any physical activities..
As a keen golfer and a father of 2 small very energetic children i have taken to using Prednisolone 5mg whenever a big event comes around be it golf or family activity as it gives me great relief and allows me to feel normal again even if only for a short period..
Ive taken on 3 separate occasions this year and will do so again for our family holiday in September.
Decreasing dose of 30mg for 2/3 days 25 for 2/3 days 20 for 2/3 days etc etc..
I saw my specialist at the hospital recently and advised her of my actions regard taking steriods to which she urged me to not repeat due to long term damage that they can do and instead to take Naproxine which I have taken before and did nothing for me whatsoever..
She has left a nagging doubt in my mind regard taking Steroids again but the draw of feeling normal and being able to enjoy family time in the swimming pool etc with the kids without consequence may prove too big for me to not take them.
Am I really doing myself such long term damage with such short does and only 3 or 4 time annually?

[Deleted User]

Hello

Thank you for your post and welcome to the forum. I am sure you will find answers to your questions, advice, light relief and friendship here.
There are many on here who have RA and also use steroids as prescribed by their rheumatologists.

If you are really concerned about the advice given to you by your consultant, perhaps it might be an idea to ring our Arthritis Care freephone help line which is open 10-4 Mon to Friday. It is manned by volunteers who have no medical training but who will be able to listen and discuss this with you. The no. is 0808 80040 50.

Arthritis Care produce publications and booklets which can be accessed via the heading to this forum. or www.arthritiscare.org.uk/publications

I am one of the moderation team we all have one or more of the arthritis hanger's on or look after family with the same.

Besst wishes
ChrisK

trepolpen

hi Jonny ,

I would take the advice from your consultant , you will have a lot time to live with RA & hope at some time they will find a good treatment for it

as for steriods , they are used to treat asthma etc and for RA its better to have injections/infusions , some take maintainance dose of around 7.5mg or under but higher can cause alot of other problems like diabetes so not worth it

WaitingPhoenix

Hi Jonny,
My rheumatologist was very concerned about me being on steroids as I've been on them for 6 months. I started at 20mg and felt so well it was wonderful. I've been reducing down and it's been very hard, at the moment nothing helps me like steroids do but the long term implications are v serous. I've never heard of the dangers of steroids if you take 5mg as a one off, I thought the risks were only relating to long term use. How do you source your steroids? Mine were prescribed by my rheumatologist. I'm on 3mg a day now but understand the temptation to take higher doses sometimes, it's nice to feel well

dibdab

Hi there,

As both an asthmatic and RA sufferer I understand the attractions of how well steroids can help us feel on a temporary basis. But I would urge you to heed the advice of your consultant to treat them with caution, they are powerful medication and a useful add on to the armoury of medication, but they can have powerful side effects if not taken on prescription and carefully supervised by a physician. My son, a paediatrician, once explained to me that overuse of steroids can affect the bodies own ability to produce the necessary hormones (cortisol particularly), which is why their use is carefully monitored. This website explains some of the potential dangers:
http://www.webmd.boots.com/a-to-z-guides/side-effects-long-term-steroid-use

Deb

JONNYFRESH

Thanks for all the advise..
The census seems to be that I take heed of the specialist advise.
Its just so frustrating to know that without them I will struggle greatly to be the clowning fool running around with the kids when we go away on holiday..
I raised the question as what I consider to be small dosage and only on occasion would not be that that harmful to me long term..
I source my supply from chemists in Spain as they sell directly over the counter..
I stocked up after a recent visit which i know is naughty but the docs refused to prescribe them to me..

dreamdaisy

Steroids are wonderful when they work but they do nothing to address the root cause of the disease. When taken long-term they can also lead to further health complications because they work indiscriminately, thinning all body tissues including heart muscle, lung tissue and bones. Then there's the weight gain, the moon face . . . of course it is lovely to feel better but they are not a solution and that is why your doc has refused to prescribe them. Feeling better is addictive - I took tablet steroids for three years to get me (initially) through a rough patch, a steady drip of between 5 and 10 mgs per day, got fat and moony but didn't care until a good talking to from a rheumatology nurse. When they are offered now I refuse - as far as I am concerned they are as slippery a slope as alcohol and cigarettes. It took me a year to come off them fully as my body had forgotten how to make the natural equivalent and had to get itself into gear again.

I take humira and meth, I know they are controlling the disease and that is enough. Steroids have a role to play in so many conditions (I inhale some every day to control my asthma) but, as far as I am concerned, the temporary relief they give my PsA is both pointless and useless as the condition is permanent. DD

stickywicket

I, too, am with all the others plus your rheumatologist. Steroids are seductive little monsters and shouldn't be treated as if they weren't.

I do understand the need to play with the kids. I've just had a riotous week with one 8yr old grandson over from USA and my days have begun with either table tennis or footie before breakfast :shock: When my own sons were young I had to find different ways of being a fun Mum. Unlike their friends' Mums I allowed all and sundry into the house over school holidays (tidy, clean houses and arthritis are not happy bedfellows) and I scored for them at snooker or table tennis and played a (very) little cricket and footie in the garden. At beach cricket I sat in my deckchair - both wicket keeper and stumps

A little creativity is required to sort out new forms of bonding and enjoying together but trying to exist as if the arthritis isn't there - or even isn't there much - will just not work.

Please, if you want to be there for your kids' own children, only take steroids as prescribed by your docs and never buy them from dubious sources.

WaitingPhoenix

Hi Jonny
Just read Sharon's reply and it reminded me that during my last flare I went to the gp for help with the pain and was prescribed a month of naproxen which really helped. Worth a thought?

palo

As a long term steriod user since December 1999, and on very high dose initially (first 6 years and during relapses), I can only reiterate what the others have said. Please listen to your neuro/rheumy.

I have had steriod induced cataracts, moon face, apple body, high blood pressure, regular diabetes scares. My skin is so thin it bruises like anything. Last year had my gall-bladder taken out, this year had my eyes re-lasered. Hearing issues which resolved just prior to surgery( wtf) Carpel tunnel surgery both hands in 2010.

Diagnosed with arthritis and sciatica this year.

How much my subsequent issues have been due to steriods is anyone's guess.

I am now on only 3.5 mg daily since June, was 7mg since last year, then 8mg previous few years. Started at 50mg daily in 1999.

Try to deal with it with any other alternative, for me there were no alternatives that worked/offered.

Good luck

stickywicket

Palo, I always felt you were someone who just put up with the rubbish and got on with life. But I'd no idea quite how much rubbish has come your way. You are amazing. Well done!

palo

stickywicket wrote:

Palo, I always felt you were someone who just put up with the rubbish and got on with life. But I'd no idea quite how much rubbish has come your way. You are amazing. Well done!

Thank you SW, unfortunately that is not even half of the s**t, but the rest is too hard to talk about, and I don't think has any connection to the steriods.

frogmorton

JONNYFRESH wrote:

I was diagnosed with RA 2 years back and and currently using both Humira and Methotrexate in an attempt to keep symptoms at bay...............
.
She has left a nagging doubt in my mind regard taking Steroids again but the draw of feeling normal and being able to enjoy family time in the swimming pool etc with the kids without consequence may prove too big for me to not take them.
Am I really doing myself such long term damage with such short does and only 3 or 4 time annually?

Johnny I don't know how much harm you might be doing, but I will tell you that my daughter (most people on here know this) had leukaemia at 16 and much of the two and a half year treatment was high dose steroids, (dexamethasone 7xs strength of prednisone). At 18 they discovered Avascular Necrosis in her left hip bone and later in her Right shoulder. The steroids were stopped immediately. The pain of AVN is said to be up there with the worst there is.

Since then she has had to have surgery on her hip (sept last at 18) and a shoulder replacement (end of this January at 19).

It may be that you could be swapping one pain for another??

Obviously I don't know that you will be as unlucky as she has been, but as the person who agreed to the treatment - without any real choice to be fair - I still feel dreadful guilt that my daughter has suffered so much due to steroids

Do the depot injections of steroid/painkiller not help you? I only ask as I think it is may be less damaging????. I have had them myself for holidays with my kids when they were younger.

I totally understand the wish to give them great memories of you and their young lives as a family.

Sending you ((())) and wish I had the answer.

Toni x