Coming off steroid saga continues

[Bowenlady]

Hi everyone. Not posted here properly for awhile. Hope you are all coping with your conditions. Well the saga of steroid reduction continues. It was agreed I’d drop 1mg a month after being on 10mg for over 2 years, and after a disastrous attempt of doing it over 8 weeks. Thanks to the information supplied on this forum the 1mg a month reduction was agreed. So the first drop was fine, drop to 8 things started hurting a lot but I thought there might have been a bit of mind over matter going on. Dropped to 7 and my feet and legs were swollen and tingling pain in my legs and heat with a rash within a week of the drop. Went to GP who said it was a vascular infection and gave me antibiotics and antibiotic cream. Dropped to 6 a month later, same issue but much worse with the rash looking like blisters in places, and within 4 days of dropping. More anti biotics and cream from the GP. I’ve just dropped to 5 and within 2-3 days same thing again. I am now on holiday in North Wales with glorious sunshine wearing a summer top and sheepskin bootee type slippers and barely able to walk anywhere. On top of this about 5 days ago I hit the corner of a metal edged wicker toy chest and it slit the skin and bled profusely, but it’s only about an inch long and not very deep. Since then I have had clear fluid running down my leg. It’s so embarrassing. It looks like my body is leaking! I went to see the pharmacist yesterday and explained the situation fully. She suggested a dressing with a plaster edge to it despite me explaining about the skin being quite fragile. So here I am in north Wales with a plain dressing on my leg held on with a tube bandage, in sheepskin bootees and summer top and baggy trousers. A sight for sore eyes, I can tell you. However, despite being in a lot of pain walking in the sand I managed to do something I have wanted to do for three years, I paddled in the warm sea. Came out and my yellow/white feet were pink, rosy, and warm. I live in a seaside town but my husband tells me it will be too painful for me. He’s not with me so my friend came with me despite her health issues. So, hwyl fawr from North wales. X

[Oshgosh]

Hi,although my health issues are different to yours,I thought I’d post you.I’ve been on 10 mgm Pred for three and a half years.if inflammation has increased,sometimes on a higher dose.

I have. Interstitial lung disease and auto immune conditions.

Consultants were keen for me to get the dose of Pred down.

First attempt,lungs were worse than ever.

Discussed with GPand went back up from 9-10. Pred.

at the next telephone consultation,they asked me to try to reduce Pred again.

The same thing occurred.

they sent me for Spirometry.

The asthma nurse rings me 2 monthly.

She read me a letter to the go which said that a drop in my DLCO (don’t ask) corresponded with the decrease in Pred and me feeling rough.

So they have given up trying to reduce Pred,

I’m going to be put on an anti fibrotic drug shortly.

It’s all going through at present,so they said about 3 weeks.

I’m 70 and I’ve been telling consultants for 2 years that it’s about my quality of life ,

Is it possible that you could speak to consultants by message / secretary / letter

Pointing out how the reduction in Pred has a negative effect on your life.

On a more cheerful note. I’m glad you’ve enjoyed your break away with your friend.

I think it’s difficult for partners.my husband is a bit over protective sometimes,sometimes I bite my tongue,sometimes I don’t.

Take care,I hope your friend has enjoyed the break as well x

[Bowenlady in reply to Oshgosh]

Thank you Oshgosh. I want to get off steroids because I have a big fat round face and body! Before, no matter what size I was I had a small waist. I’m like an apple now. Like you when there’s a big flare up he increases it to 10 and I have to start again. It’s so frustrating. I know in the scheme of things my problem here isn’t as bad as yours and others here but this constant taking of antibiotics can’t be good for me. They gave me two weeks supply this time and told me to stop when I thought best! When I go to rheumatologist on 20th we will need to discuss all this. I think I may take my husband after reading another post that says you get better treatment. Thank you. X

[Oshgosh in reply to Bowenlady]

Used to really want to get off steroids.Reluctantly,I’ve had to accept that this might not happen.

It’s been difficult to accept this.

Hi m hoping that if I can tolerate the anti fibrotic drug, I may be able to reduce steroids,but aAM unsure if I got the wrong end of the stick.

I’m considering applying for more Cognitive Behaviour Theraphy,but I don’t know if I am up to it currently.

I Hope you can sort something out with your consultant when you see him.x

[Mmrr]

Firstly, I paddled regularly on my recent holiday in Cornwall and loved it too. The skin on my feet was so soft and pink. Fabulous. I hope you enjoy another wee paddle before coming home. The salty seawater may help keep your wound infection free too. I too have been on steroids for a long time and just can't seem to get the dosage down, but it is about quality of life for me too.

[summer32A]

Hi Bowen lady I did gradual reduction over 6 months or more...quick ones are bad.Please see if you can get to a minor injuries unit or walk in centre with that leg.

I know wales health system stretched however!

South West England is so bad they are running adverts on TV saying ring 111. Not 999.

[Runrig01]

I’ve been on steroids for 10yrs, and used to taper to try and get off them. Unfortunately my adrenals atrophied and I’m now left with life threatening adrenal insufficiency, and have to carry an emergency intramuscular injection of hydrocortisone to administer if sick or injured.Like you I used to struggle with the 1mg drop each month. One specialist advised what they called”the dead slow nearly stop” approach. It’s where you introduce the new dose just one day the first week, so for example 7,7,7,6,7,7,7. Then the next week add another so 7.6,7,7,6,7,7. And continue that so over 7 weeks you drop 1mg but your body has been tricked and doesn’t notice it. It worked well for me till I started getting the adrenal insufficiency symptoms of nausea, weight loss, headache, lightheadedness and postural hypotension. If you do get symptoms suggesting your adrenals aren’t wakening up, please don’t continue to taper. See a gp and get an 8-9 am blood cortisol done. I had a severe stroke due to insufficient cortisol, and would not wish anyone to go through the same journey. Take care and listen to your body 🤗

[Bowenlady in reply to Runrig01]

Thank you. People here are so informative! That dead slow approach may be the answer! Flipping heck why doesn’t my rheumatologist say this? Since December I’ve had 8 lots of antibiotics. The leg has not been a problem other than leaking but today it is really painful. Last night I had severe pain just under my breasts and ribs were worse than usual ( I have costochondritis). Felt it may be trapped wing making it worse. Took deflatine which is anti foaming and hey presto that was the problem. Fed up of it all to be honest. Something different all the time.

[helenlw7]

I have been on steroids for over 10 years and have been told, and tried, to reduce the dose. I reduce by 1 mg a month and even at that amount, my body knows. I got down to 5mg for a while, but breathing became difficult (I have severe asthma and bronchiecstasis as well as RA) as well as more pain in my joints. It was decided that I am steroid dependent and 10mg a day would be ok. My issue is that I’ve come to the point of needing a knee replacement, but the orthopaedic hospital won’t do it unless I’ve been down to 5mg for 3 months. At that point, they probably won’t operate because my breathing will be too bad.I’m glad you enjoyed your paddle in the sea.

[Bowenlady in reply to helenlw7]

Thank you

[Egpa]

Hi, I had a problem with coming off prednisone that I had been on for 3 years, it took a long time, at the start off lock down I started to come down from 10mg to nil it took over 6/8 months to come down 1/2 or one more a month, caught everything going, infection after infection got stuck when I got to 2mg for a while and had to stay there until my body got used to it. But I have now been prednisone free for a few years. Very hard at the time but worth it, lost over a stone and feel much better. Hope you keep trying it May take a while. Good luck.

[tyncwmmarchhywel in reply to Egpa]

Do you take any other medication for your illness, thank you.

[Egpa in reply to tyncwmmarchhywel]

Yes, mtx 20mg injection. Folic acid. Fostair, ventolin, thyroxine. To name but a few lol. I have ra, bronciactsis and asthma, I did take paracetamol regularly when coming down and ended up on a lot of antibiotics, but make sure you send a sputem sample in so gp can send off to be cultivated make sure you get correct antibiotics. Good luck.

[SmilerWend]

Hi, I've been tapering down prednisolone too since Feb, I've been on 7.5mg since 2020 and have not been to bad except for the leg swelling, no rash though, I'm now down to 2.5mg and I see Rheumatology tomorrow and am going to mention leg swelling so I'm glad you posted. By the way I live in North Wales, health board is struggling a bit but maybe chemists can help if need be and Llandudno has got a really good miner injuries unit if your anywhere near. hope you get help.

[Bowenlady in reply to SmilerWend]

Hi, thanks I’m just outside Colwyn Bay. Tan y Graig. I’m going to have serious words with my rheumatologist. I’ve been seeing him about every 13 weeks only after a fuss trying to get an appointment. I’ve told him before about swelling of my legs. We should not have to fight for appointments. He says “I’ll see you in 13 weeks but you had better phone up and fight for the appointment “. What’s that all about??? Then he gives me medication to last 13 weeks! I just don’t get it.

[SmilerWend in reply to Bowenlady]

Hi Bowenlady, Tan y Graig, Llysfaen ? gosh you are only 5 mins from me lol, well the new consultant I saw this morn wasn't much help, got a specialist nurse app at end of June so She might be better fingers crossed. Hope you've enjoyed our beach in spite of road works etc. Westshore beach Llandudno is lovely too and Llanddulas down the road, some very pretty villages down the back lanes of Llysfaen, enjoy your holiday.

[Bowenlady in reply to SmilerWend]

Well small world eh. I live in Port Talbot , South Wales. Yes it is Llysfaen. We are in holiday cottages there.

[Thingybob]

I struggled to taper even gradually below 5mg. The rheumy nurse gave me a steroid shot and that wore off gradually over 12 to14 weeks . I stopped oral steroids when I had the shot .

[Bowenlady in reply to Thingybob]

Thanks, I wonder if that is the answer then? Mmm lots to think about before I see him next. X