hi
anybody out there. i am currently under the rbh and slowly coming donw off pred after about 6 years on 15mg, it is causing some achy side effects, apart from taking high dose pain killers leaving me unable to drive or function what else can i do, please help. i am down to 10mg so doing well.
take care lisa xx
Lisa i used painkillers, hot and cold compresses on muscles. But apart from that found not a lot worked. It is a horrible feeling coming down off pred isnt it? How did you get on at RBH i am there in march.
Am so sorry your suffering and im afraid painkillers and supportive treatments like hot radox bath etc are all you can do, its pants really. if you were an alcoholic or drug addict youd get prescriptive drugs to combat side effects!! were withdrawing fron an addiction put on us to save are lives and nothing can be done!!
love andrea xxx
Hi Lisa,
I am more or less stuck on pred ( been on it for 10??? years)- I have got down to 4mg but had too many side effects - low BP etc. I am on 10 mg at the mo and take it down by 1mg a month or 2.5mg to 7.5mg then must go down by 1 mg a month any lower than that. I have screaming joints as I call it plus agravated by Polymyalgia ( helped by pred!)
Pain killers, heat, gentle excersise, TeNS machine etc but I do find it does calm down a bit after 2-3 weeks at the same dose..... then starts again when I reduce it again! arrrr!!
Just take it very slowly! Can't really advise more.
My consultant has also advised me that if I can't keep pred down eg tummy bug I must get help as I have real problems if I don't have pred each day.
Anyway, Take care & good luck!
Kate
XXX
Hi Lisa am in same position as you trying to come off and suffering lots of pain and probs. I wil pm you
Den
I'm reducing too and am down to 15mg. I find the pains in my legs the worst to deal with but guess we just have to cope! It's so annoying.
Does anyone else get worse mood swings when reducing pred?
i seem to become an emotional seesaw for a couple of days after changing dose swinging from manicly happy to crying in the corner for no reason.
Hi Lisa,
Well done so far on your reduction of pred.
I’m in the process of reducing pred, for the umpteenth time in almost three years. Prior to that took pred sporadically for approx seven years.
Was on a maintenance dose just after Christmas but had to return to my max dose - 30mg per week - because of night -time breathing probs. On 20mgs this week, and then reducing very slowly with alternating minus or plus one mg per day, if that makes sense.
I've got very achey shoulders and hips. Finding it a little difficult to push the car door open! Stretching seems to help, especially after a warm shower. Can you get someone to give you a gentle massage? Again quite soothing.
What helped me most of all was going on holiday somewhere very warm. (Know it’s not much of a practical option, but can make a big difference.)
Also taking magnesium and calcium supplements plus eating lots of dark green leafy veg and brightly coloured salad ingredients is worth a try. I’ve got a tremendous craving for spinach, red, and orange peppers, - used to be broccoli – but not anymore! LOL.
Good luck
Marmite, this time round I’ve not experienced such big mood swings, as has often happened in the past – much to DOH’s relief , -but quite honestly could cope with the up and down mood swings, but finding the general feeling of hopelessness more challenging to cope with this time round. Hmmmm.
Kate, have you tried etanercept for your joints…and asthma?
Mia
xxx
Marmite dont worry apparently its a well know withdrawel effect is deppression and mood swings they just fail to tell you!! I found out last summer when had a massive fit and walked out of clinic, feeling stupid later i email cons and he said dont worry its a recognise effect and the more you reduce the worse it gets!! great, he was just happy i let it out rather that bottled it up.
Good luck to all
Andrea xx
Hi, I Have moody times on really high doses.
put other timed down to PMT - not really looked at pred reduction & mood swings!
Mia - what is Etanrercept???
Kate
I found even being on short courses I got terrible mood swings. Especially bad depression, suicidal thoughts and thoughts of self harming which were out of character for me. I'd just not want to do anything. Once I drunk alcohol and that made things even worse, I was terified I'd go through with my thoughts. It scared me so much I've never drunk on pred since.
This time I'm also taking antidepressants and the mood swings were a lot less and I've not had any nasty thoughts at all.
Mood swings not my prob really its much more physical. Joint pains are bad especially hands, guts rebelling - enough said. This week now am down to 9 feeling very very sick which is horrid and foced me to gp yesterday to get some pills. Unfortnaltey they react with heart meds so was given them reluctantly until mon and then have to talk to rbh. Oh and not to forget the catastophic tiredness and the headaches!!
Keep up the fight
Den
Hi Kate,
Etanercept, ‘Enbrel’ is a monoclonal antibody -and therefore classed as an immunosuppressant drug - that was first developed to treat autoimmune diseases such as rheumatoid arthritis. It affects the immune system by reducing the severity of the inflammatory process. Some researchers and doctors believe this drug can also help people with severe asthma.
Clinical trials seem to have produced some impressive results, although as usual, this drug, like any other similar one, is not without side effects. However, as a ‘steroid sparing’ treatment it looks promising.
I’ve included this web link for more information.
soton.ac.uk/mediacentre/new...
Mia
(Trying not to hijack this thread. There are some tenuous links!)
Hugs to everyone in the struggle
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
Thanks Mia,
anything to help with the pred reduction / aleviation of problems is helpful!
Kate
xXx
hi all
thanks for your tips, my hips and arms seems to be the worst at the moment will be going down to 9mg at the weekend. the rbh is the best place and really cares, take care all
lisa xx
hi Lisa and everyone else reducing pred, and good luck to everyone.
I've been interested in reading this thread as I didnt realise you could get nasty effects from coming off the stuff. Though not sure if I would after only 18 months on it? Would be nice to blame the achiness and the tiredness - OMG the tiredness! - on coming of pred as I've really been begining to wonder if i had something else wrong with me!
I dropped to 4mg yesterday and have been told to carry on reducing 1mg every 2-3 weeks, so that magic 0 is in sight!
LJH I have just got to 9 doing two week drops of 1mg is that what you are doing? Told Debbie about feeling sick and she says not usual symptom so now wonder what else it could be aarrgghh.
Den
Fingers crossed first night off pred
pred.
Finishing pred
