road trip with prednisolone

earthspirit

ok people well i have had great success with these and i just wanted to post & let you know how i got on driving from aberdeen to london.

i got a 5 day course of 30mg and started 3 days b4 the drive, to allow a build up in my body. my doctor phoned me up on day 3 just to make sure i was ok & told me a story. 25yrs ago one of his friends who was severely disabled was attempting a 10 mile charity walk. it was an impossibility as the guy apparently couldnt walk 10 yards. he took steroid and with much trouble, did the walk. there was much back slapping & mega congratulations about his inner strength, determination, selfless behaviour & will power etc but doctor said that his mate never once mentioned to anyone that he had taken steroids, so in effect, got praise whilst actually cheating. doctor said to me that he didnt tell this story to patients, but knew i would think it ok.

so anyhow, i started the drive & did all the way from aberdeen to birmingham with just a couple of stops and really very little pain and not looking too much like a total cripple when i was getting out of car. i had expected to do payback on the 2nd day of driving and the last day of the pills, but no, i carried on sailing into london with no problem at all. they were very speedy & didnt have much sleep BUT rather than my normal waking up at least once an hour, i actually slept for 3hrs which was amazing.

i didnt have pills on day 6 but still had the effects, so have been able to go out and do stuff not normally possible.

today is day 7 and ive just had about 4hrs solid sleep but the effects are obviously wearing off as my joints are a bit more stiff, BUT my muscles actually feel so much bettter, as ive been able to move around more.

its been such a wonderful relief and i would not hesitate to take a 5 day course again when circumstances required (doing 10 mile charity walk? lol)

i have RA with multiple constant flared joints and have many care needs due to both arms and legs having problems. these last few days i have done so much more myself & whilst i do have the help around that i need, i do as much as i can myself in order to retain as much healthy muscle as i can. (RA has emaciated my muscles very visibly & huge weight loss)

for the future weeks, i feel inspired to get into pool and do backward walking and whatever else i can in the water to build my strength.

ive only taken 1 dmard (sulfasalazine) and resisted methotrexate for 18mnths. i take a lot for pain but am not downhearted about getting back some quality of life ( now im back in my own home my head will find it easier to adapt to any disability)

i just wanted to share this "success" AND amazing CHEAT so that maybe others may consider doing same thing when confronted with a physical task that might seem impossible.

what i am interested in knowing though, does anyone take low dosage steroids on a more regular basis and find they help, without having to resort to dmards / biologics etc? i know that different stuff works differently for different folks but i also spoke to the mother of a 22yr old old who gets steroids to use 2 days at weekends, just to retain quality of life and she been told that this is safe to use, at least over a year or two.

i am so amazed though people - what a wonderful drug to enhance what the body cannot do for itself. very happy lady to be back down south, even tho im scottish and love my scottish home too.

VictoriaLouisa

My mother has had to take Pred for many years ,( she has kindly passed RA and lupus etc on to me) and years ago her GP said just remember that Pred only masks the problems and even though you can't feel it the joints are still getting worse, and if you abuse that lack of pain now you will reap the "rewards" in later years. Unfortunately, she did do too much and at 62 is now permanently in a wheelchair. enjoy the freedom from pain that pred gives you, I know I do, but my own GP says "just remember there is a little time bomb ticking in the back ground if you do too much !!!"

earthspirit

thanks VL for your reply & info. the words that are sticking are the "doing too much". i think that if the pred allows you to excercise rather than just sit, there has got to be a great benefit in getting better muscles to support the joints. if you just take the pills and dont work with them to help restore greater health, the payback will be worse.

i think that too many people, with many different types of health conditions, just take pills and dont put in the effort to help themselves restore or maintain optimum health. too many folks become "doctor dependant" & hopefully my 5 day cheat has inspired me to not become one of those...........

tillytop

Hello Earthspirit and really well done for managing the "road trip" - cheat or not!

I am pleased that the pred helped you so much but I would seriously advise caution in terms of its long term use - even at low doses. Docs will often tell you that at doses below 10mg daily, serious side effects are less likely, but I wouldn't be so sure of that.

I have been on pred doses varying between 1mg (never did manage to stop completely) and 30 mg for many years now and, as has been said on here before they are "seductive little b*ggers"! As you have found they can work miracles quite quickly, which can make it very hard to go back to life without them. Apparently, when they were introduced they were considered a "miracle cure" for all sorts of things - until docs realised the potential long term side effects - high blood pressure, digestive problems, depression, diabetes, muscle wasting, osteoporosis, thinning of skin and other body tissues, poor wound healing, cataracts and other eye problems - and the list goes on. When NSAIDS where first available, they were known, apparently as "steroid sparers" because they were considered a safer option I guess.

Although I was already a walking list of osteoporosis risk factors, my long term use of steroids certainly hasn't helped and osteoporosis was confirmed last year - the bone density of my spine having decreased by 12% in less than 2 years. I have fractured my ribs twice in the past couple of years and am now dealing with an osteoporosis related stress fracture of my shin - which occured whilst hardly walking at all, and even then, very slowly using crutches. And take my word for it - you do not need to have osteoporosis on top of what you are already dealing with!

Neither had I realised quite how much the pred was affecting my bp - since reducing the pred, my bp has come down significantly - from too high even with bp meds, to almost too low - which makes my GP very happy!

I also have very thin skin, horrible steroid related permanent stretch marks and goodness only knows what other invisible damage it may have done.

I know that, for some people, pred really is the only option and that, at low doses alongside other meds it can help hugely. And it is the only thing which rescues me from the (thankfully now only occasional) total head to toe seize-up. But I would seriously advise caution before you start down the long-term pred route Earthspirit. I know that you have concerns about the DMARDS (and who wouldn't) but oral pred is, in my view, just as worrying. Over the years I have had pretty much every DMARD going but very few problems with them, and none which didn't go away when I stopped the offending med. But the pred has left me with a lasting legacy - one I am going to have to live with forever now and my aim is to get off it is as soon as possible and to avoid it like the plague in future unless there is absolutely no option.

Sorry if this sounds like a rant - but it is all to easy to be seduced by pred's quick results - and not realise the downside until it is too late.

Tillyxxx

kellerman

Firstly congratulations on your mammouth journey. For that I applaud you.
Please take what Tilly has said seriously.
Preds are nothing more than a quick fix and come as Tilly said with their problems with long term use.Once you start on the long term journey of taking them on a regular basis it is so hard to get off them.
Please discuss this with your doctor and see what is advised.

LignumVitae

I totally agree with Tillytop, very well put. I would like to add too that I am currently methotrexate free because of trying to conceive and am using steroids as a safer alternative for the short term. In terms of disease control, they really do just mask things and in that respect, I find them a bit dangerous. They offer me little in the way of control in comparison to the methotrexate and after just two injections over three months I have noticed far more side effects than from the methotrexate - most of the meth side effects are easily countered with folic acid, nothing can be done to heal the flip flop induced wounds on my feet which would normally have been gone in a week but are still present two and a half weeks later.
I understand your reluctance for DMARDs, I don't think any of us go down that route lightly and I didn't until crazy disease activity, desperation and a loss of control and life gave me no other option. However, the correct dose of the best DMARD for me has knocked out the use of other meds considerably. I don't like to take anything but with methotrexate, on good days I can walk miles, rock climb and do many things which I cannot currently do with steroids and which I had given up on before I chose to go down the methotrexate route.
Well done on the drive, oh and as a quick PS - the sleep thing, I've totally lost my ability to sleep since switching to steroids from meth - wake up every night with pain and discomfort.
Hope that helps, LV xx

dreamdaisy

I wish you were teling us something we don't already know. You're not the first to discover their wonderful properties and you won't be the last. I spent a year weaning myself off them (yes, it took that long) as even I became bothered by the long-term prognosis of steroid use, namely osteoporosis, thinning heart, lung and gut tissues, thinning skin and the 'addiction' of feeling better. They are seductive little things, far better in my opinion than the injections, and as such are dangerous because they mask things so effectively. Of course you managed the drive, hell's bells any of us could if we were propped up on those little beauties! It still irks me greatly that, when I present a problem with inflammation I am told 'Have a week at 20 mgs, that will sort it.' That's the same as telling a junkie in rehab they can have one more fix - I am a pred junkie, pure and simple.

You have a choice, as do we all, about whether to take the drugs or not but please don't present pred as a solution. It's anything but. DD

mig

I fully endorse what the others have said,I don't mean to be offensive but I think you have been suckered in by a quick fix,be careful it doesn't come back to bite you.Mig

earthspirit

big thanks to you all for your input. far more informative that just googling things or asking a doctor.

i wont be lured in for any long term anything with these - i have the benefit of yours and many others hindsight.

they are a quick fix - taken only really for the journey and i was thinking low dose over month or something, might allow me to regain some muscle strength. i didnt actually want them in the first place lol

end of day 7 now and 2 days without pills and i am feeling the kickback which in reality is only just my normal everyday disability and pain. ive also forgotten to take half the pain meds and i got a big bitch of a headache.

fully aware that i have all this toxic garbage to get out of my body but just getting geared up for delivery of 400 boxes.......or sumthin like that lol

rest assured i take your wisdom and experience seriously and i wouldnt advise anyone to go down the path to what would become a total dependancy with the well known side effects

i AM going to use them to cheat again sometime tho!

dreamdaisy

They thin every tissue regardless, they won't target the inflamed stuff alone. You are concerned about muscle wastage - these will only add to it. These little pills kid us that we're better when we're not, that we're fitter when we're not, that we've improved when we haven't. I love them and hate them with an equal passion. DD

Colin1

Hello ES
What great news and sounds like you had a great time and a really understanding GP. I have been on Prednisolone for 7 years now started on 25mg a day 7 years ago today i take 10mg a day but am desperate to get off them. Its not a med you should be on long term as it effects your bones and can cause other problems. Pred does nothing for your disease it just masks it. So you cant use it for a treatment its just simply for relief.
Anyway glad you done well its so hard to cope at times and we miss out on so much its good to have an edge now and again. Well done for managing and coping
Colin

earthspirit

hi again colin
im not taking dmards only pain stuff as although my disease activity is very high i dont seem to be one of the ones who gets the really awful deformities and i cant handle the "sicky" effect of any medication - sulfasalazine did this and left me a snivelling wreck in bed & i have made the decision that methotrexate is not for me at this moment.

i have somehow been able to control this disease undx for many years, i think with my ultra healthy diet and lifestyle. i am weak and in a lot of pain but i still think that restoring all the lost weight and regaining the ability to at least swim, can only benefit my condition. i can barely walk and cant use sticks etc cos of hand neck shoulder issues so i hobble. i can only stand a few minute and balance is awful. thats why i am thinking short term (few months) steroids. will let my brain settle b4 i make any decisions

lulubell69

Hi peeps
Agree with everyone, pred only masks the symptoms but does give great relief short term. I've been on pred for 9 years, various doses. I've just been on a cruise and, on my request, my gp increased my steroids to enable me to enjoy my hols. Couldn't get off boat much, too much walking, but it gave me the opportunity to walk around far more than I would have without them. However, I have never fully weaned myself off them, and twice ended up in hospital with pneumonia when I got to 3 mgs, docs again increased them, and so the cycle goes on. Whatever meds I am on, been on most, I have always took pred, it has thinned my skin noticably and goodness knows what internal damage it has done, I also have osteoporosis. I believe my body, and RA has become dependant on it. However, at 43 I want to have enjoyable holidays etc so therefore I have accepted the risks involved.
Also had many many steroid injections over the years, however they have little effect now.

Take care
Les