Hello lovely folk, I am interested in your thoughts, wisdom and experience. I have been reducing my Pred, super slowly, for over 2 years. I have been reducing by .5mg, usually every 6-8 weeks. I am used to the first 2 weeks on the full lower dose being uncomfortable, then the next 3-6 weeks being reasonably ok, but this latest drop from 2.5mg to 2mg just doesn’t seem to be getting any better. I started a low taper in December, (Week 1 - 1 new dose. Week 2 – two spaced apart. Week 3 - every other day, Week 4 – 2 new/1 old) – finally going to 2mg fully from 19th Jan. The first week of fully on 2mg seemed ok and I felt my slow taper had paid off, but the last 2 weeks have been really uncomfortable – most particularly on waking in the morning. Pain doesn’t seem to stop me sleeping (or, strangely, turning over in the night) but when I wake up, my hips are agony. Getting out of bed is a painful struggle and it is only when I have moved around and flexed my hip area that I can begin the day. Some mornings, the pain continues and I have to take Co-codamol to get to work, but I really don’t want to make this a daily dose as I fear it will lose its potency if I do. Having worked so hard to get down to 2mg – I really, really don’t want to go up again. I have tried changing the time I take my Pred from lunchtime to evening meal time – which only seemed to make a small difference. Sorry to be long winded – but any experience you folk have had, or pearls of wisdom – would be gratefully received. (I am also on a weekly 20mg dose of Methotrexate - which was given "to help you get off the steroids" - but I have always failed to feel what help they are!!)
Toughest Pred reduction so far ..... any advice o... - PMRGCAuk
Toughest Pred reduction so far ..... any advice or tips please
I think if Co-Codamol helped my hip pain I would be wondering whether the source of pain was arthritic. It might be worth having this investigated. I would also be alert to Adrenal Insufficiency at this stage and would discuss a short Synacthen Test with my doctor. You have done beautifully so far, heaven knows how you’ve managed to work. This too will be contributing to your present struggle. Good luck!
Thank you Jane. Yes, the hip pain is so much worse than all the other joint pains, that it could well be down to something else. I have put a call in to my Rheumy (goodness knows how long it will be before I get a call back!!) and I will ask about a Synacthen Test, or are you suggesting that a GP could arrange that?
Either really. My Rheumatologist contacted the Endocrinologist for me. I remember my GP being alarmed at the suggestion and saying “ Oh I don’t think you’ve got Addisons”. So perhaps it’s not quite their area of expertise.
Thank you. I'll see what the Rheumy says about the test then.
Sorry to butt in ,but you talked of Addisons ? i have just had the worst app with a new Rheumatologist, he was rude blunt and really unkind. He told me i may have Addisons but could not be sure until im on a lower dose of Pred. I was on 10 when i saw him, he said get down to 6 and he would take it from there. I was in a lot of pain the day i went and ended up telling him what i thought of his manner. I have told my GP i wont see him again as it was pointless ! I asked my GP about Addisons , she more or less said the same thing !I dont think its that ! I am at a loss of what to think, how did you get on ?Hope you dont mind me asking. Thank you Viv.
It is SECONDARY Addisons - due to the fact you are taking a dose of pred that is similar to or higher than the physiological dose so the body doesn't produce more corticosteroid. He can't tell at 6mg either, most endocrinologists want you at 3mg before making a decision. SheffieldJane had next to no function at 5mg pred. by 3mg the adrenals were producing cortisol fairly well.
He wasn't only rude and unkind - he was ill-informed (to be polite).
You are never butting in. These posts are for everyone. Steroids suppress our own production of cortisol because it’s simply not needed. For most people this function gradually recovers at the end of steroid treatment. Actual Addisons can have a number of causes like cancer, TB, injury to the glands, even surgery can damage the glands that are situated near the kidneys. I regarded it as quite a separate condition to having our own function temporarily switched off due to steroids. Sometimes getting them up to speed again can take as long as a year. I had a Synacthen Test that showed an inadequate response when I was on 5 mgs of Pred and a perfectly normal response when I got down to 3 mgs. I am hoping for the same when I get down to 3 mgs after my subsequent GCA treatment. I will return to the Endocrinologist then. I hope this helps. He sounds like a horror, avoid, avoid, avoid!
Thanks, this is comforting to hear now i really wonder why he made such a huge assumption !I was so low and in so much pain that day, it was lucky o didnt burst into tears ! i am now at 8.5 from 40 and tapering very slowly, so not to bad. Fingers crossed i will get there one day! Best wishes Viv🌷
You are NEVER reducing/tapering relentlessly to zero - you are looking for the lowest effective dose that keeps you as well as the starting dose did. I'd say you have arrived at your destination - for now. It doesn't mean you won't get lower, just not yet. It doesn't matter how slowly you go down - you won't get below this dose at any given time,
Don't refuse to go back to the dose you know was enough - if you leave it the left-over inflammation will just build up until you are as bad as at the start and you could end up having to go back a long way to get things under control again. Prof Dasgupta told us 18 months ago that he often keeps people at 2-3mg longer term as it reduces the incidence of relapses.
You might need a few days of, say, 7mg to clear out the dust but then you can drop straight back to 2.5mg if you are really sure that is enough.
Thank you PMRpro - you are, of course, speaking the truth that I didn't want to hear, as I have set my heart on getting off the Steroids (and 3 other associated drugs) but your warning of things getting worse if I leave it, is a great wake-up call which I shall heed. I will try a few days at a higher dose then go back to 2.5mg in the hope that will get me back to comfortable. Thank you for replying,
Hello Prof 99 - You have done very well so far. I have taken three years nine months to get to where you are. I was just thrilled to get below 5mg. I am presently in the third week of my third attempt to slowly taper from 2.5 to 2mg and am now trying a 0.25mg taper. After each flare I added 5mg for a week as PMRpro has advised and stayed on 2.5mg for a month before another attempt. Please don’t negate your great progress by persevering in pain for too long. All the best and give yourself a pat on the back for your great progress. 🌻
Thank you SO much Meggsy. Crazy isn't it? You'd think at such a low dose, we wouldn't get such a dramatic effect - but I guess a drop of .5mg at 2.5mg is equal to 20% and that is too much for the body to accept. I took 5mg last night and have, today, had the best morning for weeks. PMRpro's advice is spot on - I shall do a few more days at 5mg then go back to 2.5mg for a while then only drop by .25mg next time. You too have done really well. This forum is so good.
You are really doing well. My PMR/GCA was diagnosed almost 2 and a half years ago and I feel triumphant to have got down to 4mg a day. I have tried a couple of times to drop by 0.25mg but the PMR creeps back so I am staying on 4mg for a few months before I try again. If I get down to 2mg...I will follow Prof D's advice and stay on it indefinitely.
I really can't afford to lose a day of work...and I am so lucky because, like you, I have managed to work (online) almost everyday since I got this wretched disease.
I don't mind taking the pred...a low dose is not particularly damaging. But I am totally fed up with feeling below par the whole time...when I work I stop feeling ill...but the rest of the time pred/PMR/adrenals??? leave me very low in physical stamina.
I yearn to return to the physically active person I was before this happened...but I don't think that is ever going to happen. I am just grateful that the preds make my life bearable and enable me to function in many ways.
Sending you every good wish for your PMR journey.
Thank you AF, I feel for you as I too was very active and keep getting constant reminders of things I used to do. Health professionals, who don't know what it is like, have given me unrealistic expectations of getting off of Pred. This forum gives me a much more realistic view from people who know the miserly of living with daily pain and discomfort. Keep Well - thank you for your support.
Hi. I am having the same problem. Reading the answers on here think I will stay 3 - 2.5 for longer. Even thinking perhaps a 5 for a couple of days. My GP doesn’t think I have PMR now but I know she is wrong. She just wants me off steroids. She said no to a synthatchen test
And WHY won't she do a synacthen test? Has she at least done a basal cortisol test for you? That will half answer the question about current adrenal function.
No. She doesn’t think I have PMR anymore.Am currently on 3 - 2.5. But struggling so took a 5 this am and hey ho relief instantly. Proof perhaps I still have PMR🙁
Well done! I hit the wall at 3mg & stuck it out for 3 weeks, but then relented & phoned my GP. He advised going up to 5mg for a couple of months, then going down by 0.5mg. I’m now on 4mg…and holding! He feels I may be on a low dose for some time, or ever, & is trying to get me to accept it!! I’m so stubborn, & just want to get shot of pred…but slowly! I had a lot of pred for lung trouble some years ago, & I’d really like a long long forever break from it! Keep on going, you’ll get there!
I was down to 4 1/2 5 mg in Fall and then I had an asthma exacerbation and ended up in the hospital. They started me again on 40 went down quickly to 15 and then now I have had to come down . Actually I’m into 12 1/2 now. Really fed up starting all over again because of the breathing.
Did you need to stay at the high dose for the asthma? My daughter gets 40mg for a few weeks and then stops
In hospital, for 4 days, got intravenous medrol(?) then switched to prednisone 40mgm last day in hospital- given instructions to take: 40 mgm 1 week, 30 next week, 20, following week, 12.5 after that but I needed more Oxygen so stayed on 12.5 but then got shingles. This all made me weaker and even less fit so I am on the waiting list for pulmonary rehab. Tapering 1/2=mgm /5 weeks to 12.5. Taking some recommended vitamins which are helping but the fatigue....Yesterday in tears feeling distraught about the whole thing- felt terrible after not sleeping well the night before but better today.
All bit complicated by the relapse and then shingles I suppose. It never rains but it pours.
Oh poor you - that is really frustrating to put months/years into getting to a low dose only to be put back up high again. Keep Well xx
I can relate to that after all the pred I had for lung issues, but they were all high dose, but short time span, none lasted longer than 2-3 weeks. I thought you would be back down to where you were when your asthma trouble started. I didn’t have PMR at the time, so don’t have the knowledge! Good luck!
I share your feelings about MTX!
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