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Date: 08.07.2016
From: SammyO

Subject: Long Term Steroid Use - Prednisolone

Hello, I have been on Prednisolone now for four years and have all the expected side effects, cataracts, osteoporosis, thinning skin. I have been trying to taper down the dose, got to 7.5mg and all the symptoms flared again so my dose went back up to 10mg. I have been reducing 0.5mg every 6 weeks so going back up is pretty disappointing. Im really starting to worry about never getting off the steroids and how bad the side effects are going to get. Is anyone else taking these long term and am I worrying about nothing ? Many thanks.
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Date: 08.07.2016
From: lucy

Subject: Re: Long Term Steroid Use - Prednisolone

Hi Sammy, Steroids as you know are great for reducing inflammation, i have had loads on injections and before i went onto a biolologic drug i was on oral steroids for a short time and like yourself anything below 10 mg didn't work and 10 mg isn't really a big dose but it would be better if you could find something else that would help and then maybe you could get off them altogether. What other drugs are you on, have you tried the biologics?
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Date: 08.07.2016
From: SammyO

Subject: Re: Long Term Steroid Use - Prednisolone

Hi Lucy .. I have been on Golimumab, Methotrexate,leflunamide, sulphasalazine and about 3 others. It sometimes feels like I have an alergy to medication, the meds theyve tried have made my lips go blue and my tongue swell (ended up in hospital with that one), my skin started to turn black at one of the injections sites and the scars are still there 18 months later, one of the others I lost 80% of my hair. The drugs never get a chance to show they can work and I get took off them. The only thing that I ever seem to tolerate is the steroids but Im really struggling now especially with the cataracts. I was given Tramadol last week for pain, took the dose on the label and was out for 24 hours ... so no more of them as I have to go to work :( Currently taking between 10/12 paracetamol and ibruprofen just to keep the pain down. My rheumatologist isnt very helpful, sits with his back to me through the appointment - think this is his usual style - not just me lol. I want to ask for a change but worry how that looks but in 6 years after being diagnosed I dont seem to get anywhere. Bit of a rollercoaster that is on a dip at the minute.
Thanks for replying though, when things get tough I always come back here and someone is out there :)
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Date: 08.07.2016
From: lucy

Subject: Re: Long Term Steroid Use - Prednisolone

Hi Sammy, That's not right that your rheumatologist is treating you that way, you don't deserve to be treated like that so i really think you should ask to see someone else or even go to another hospital if possible. It is a bit of a rollercoaster, one that i wish i wasn't on. I remember one of the family doctors saying to me before he retired if he had RA he would prefer to take a small dose of steroid, but if you are having side effects from it then they should be offering you something else. I take a drug called Rituximab, i go into hospital every six months or so to get it and it has helped me a lot, well it has done for the last 4 years but i'm not feeling so good just now. It could be worth asking about something else. Have you tired Enbrel or any of the anti tnf's? You really have to speak out and get something else now, i think sometimes we tolerate more than we should. Good luck xx
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Date: 09.07.2016
From: Colin W

Subject: Re: Long Term Steroid Use - Prednisolone

hi SammyO , you are on a mantainance dose of steriods & should not have long term problems on it , around 10mg or less is ok

as for the other drugs , I would never recoment Golimumab because of the problems I had on it , there are so many better biologics out there like Rituximab which I am on now , & Tocilizumab & would ask to change it
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Date: 09.07.2016
From: SammyO

Subject: Re: Long Term Steroid Use - Prednisolone

Hi Colin
The pain and swelling is harely there on 10mg and life is good. But the rhuematologist is insisting I reduce it .. 7.5mg is unbearable pain and constant worry about not getting to work. The Golimumab caused me problems too .. I was pleased when they told me to stop.
Im due to go back to the Rheumy in August so will ask about other biologics then. But thank you for replying it really helps... wish I could take you all to my rheumy appointments .. I might get some where :(
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Date: 20.08.2016
From: casandra

Subject: Re: Long Term Steroid Use - Prednisolone

I have had an steroid injection in my bum.I has so far helped me for the last 4 months. Dr wanted me to take Methotrexate pills which i am not keen to do as the after effects could be very bad.
So my next question to Dr will be: could i have 3x ijections a year without having to take any other medicine?
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Date: 21.08.2016
From: Colin W

Subject: Re: Long Term Steroid Use - Prednisolone

hi casandra , the steriod injection should not last that long , see nothing wrong with asking for the injections , it is better to take Methotrexate than to go onto steriod tablets but you wont get any long term problems with the injections

as for Methotrexate , there is side effects , most are sorted by folic acid taking 5mg six days a week , I was on it fot 18 years but there are other immune surpressants & maybe look at them
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