If you take 5mg a day for very long, don;t stop it suddenly. The withdrawals can be very bad. I took 5mg a day for abot three months. It took me almost a month to tapper off it.
It helpd the PSA but Pred causes me to have terrible lower back pain. The back pain is a known side effect and it finally got so bad for me I couldn’t take it anymore.
I had become very dependent on prednisone and it has been painful getting to 2.5 mg/day. I’ve done 2.5mg every second day for 2 weeks and the inflammation pain is building each day. Its now in my hip and both feet and knees really yelling. Trying to go without the steroid when knowing how effective it is doesn’t come easy but I understand that it is a process and probably the right direction. 1000mg of Tylenol and a cup of caffeinated coffee seems to bring some relief as I am also avoiding the NSAID’s right now. After a year and half since diagnosis, I really doubt if all the MTX and Sulfasalazine is doing one wit of good…who knows, maybe I would be worse? But still making myself walk, light exercise and bike ride. Some of this is just “life” and we take it with an attitude of hope that change is around the corner. Next week I’ll be getting my cortisol? levels checked as I just went down to 2.5 mg only twice per week. But Oh man…that steroid was working so well for me!
“Ode to the Preddy-Zone”
Prednisone you sneaky little aid
Snuggling up to you was a bad decision made
While calming inflammation you take apart my bones
And staying close to you will bring about later groans!
Sorry to all…a bad attempt at poetry!
But we look to @Seenie for the second verse that rhymes with Methotrexate.
Peace!
@Seenie isn’t the only poet around here you know 
Methotrexate doesn’t rhyme with anything but Mtx does. I used to psyche myself up to take the tablets by singing ‘Mtx, Mtx, Mtx is better than …’
Well, that may not be entirely true and it looks like Mtx isn’t even helping your PsA. But I was scared of the drugs at first.
I think your reluctance to get off the steroids is understandable but perhaps a little concerning. You’ve had effective treatment withheld from you for too long. It must be getting hard to envisage things being different. But steroids aren’t where it’s at these days and biologics are now on the agenda … that is still the case isn’t it?
Biologics aren’t an overnight remedy as you know. So there’s still a way to go and even the most optimistic of people would be flagging by now.
It seems wrong to ask you to keep trying ‘lesser’ drugs at this stage, it’s demoralising. Sounds like adding minocycline hasn’t helped so far and I reckon you need to tell your rheumy that it hasn’t helped and that you’re getting so desperate that you’re now writing truly dreadful odes to steroids!
I’m really just trying to play the timing right…our medical system run by our provincial government is getting better all the time but C-19 has caused a huge financial strain. The board that approves individuals for costly things like biologics is even tighter now. My rheumy knows this and has a very high report with the board but needs to follow the “3 strikes you’re out” with use use of Dmards. He has to give evidence that I have given minocycline a reasonable chance…he and my GP know it won’t help but it’s just too early to present that conclusion. Prednisone is the only thing that quickly deals with my inflammation pain…so far. I am glad to be getting off it and Celebrex and Tylenol seem like my journey of coping for the next 2 months unless I really fall apart
Just curious why are you not taking NSAIDS right now too? It does look like you’ll have a summer worth forgetting about once that biologic funding comes through. Getting off pred though is the right thing to do. It’s incredibly hard though. But remember much of the issues presently could be due to the kickback from reducing pred as well. That eases down and isn’t the ‘proper’ PsA stuff. It’s just the kickback.
I hear what you’re saying. It’s similar in the UK, maybe tighter still.
Just keep up the pressure even with that excellent rheumy you have now.
Thanks for reminder about “kick-back”…I have been thinking that I am past that point and can’t tell the difference between “kick-back”, a bad flare up or is this what I am really like without inflammation intervention. I don’t want to sound like a whiner and I’m not looking for attention or sympathy…and hope to just tell it like it is as I share my journey. I have gleaned so much from other’s experiences. Yesterday was the second day in a row w/o prednisone. Severe pain woke me up at about 3:30 a.m. My left knee and both feet were worse than what I had previously experienced…not just “oh my body is aching” but pain off the charts. It was like someone pounded a spike through my knee and another from my toes to my heel through my feet. It eased off after about and hour and a half so I could relax a bit. But if I showed you pictures of my knees and feet, they look like that of a healthy 25 year old not the 60 that I am. No visible swelling at all but internal deep pain. As far as the Nsaids, I have a long history first with Viox, (which worked better than Celebrex) and then years of Celebrex as needed for 3 badly herniated discs. (They have finally shrunk so the nerve pressure is way down)
I know it doesn’t sound medical but I find that Celebrex is pretty good for about 2 weeks and then it just looses its punch. Typical of my cycle, I then quit the Celebrex and when bad enough, I get a prescription for prednisone…sometimes a blast of 50+mg for 10 days and lately longer term at less than 10mg. The prednisone gets me back to life, walking, cutting firewood and bike riding but with some bad days randomly thrown in to pretty ok days. Today I will pop 200mg of Celebrex, 12 hours apart and Tylenol as needed and follow my tapering instructions by taking 2.5mg prednisone followed by 2 days without. As I review my journal, this is my cycle that likely will remain until I am on something that works. But last night was a reality check, I have an awful progressive disease. It makes me tired and I will do anything to avoid that degree of pain to rule my future. I’m not sure what I would do without this place to share with those who know and care. Thank you!
Hi Amos.
I’m one of those people who suffered a hip fracture and needed a hip replacement due to steroid use. Having said that, I had used steroids for Crohn’s disease emergencies in the days before the biologics. They worked like a charm, but I found it difficult to get off them as the alternatives were scarce.
I had been on a long-term, low dose until two years ago when my rheumatologist put a halt to that.
My experience only.
We have surely been on the same journey, certainly agree on the pushing for biologic w that good rheumatologist who mentioned it. It is difficult everywhere, I think in Italy too it is not so immediate and budgets are tightening. In my case waited a long time, but in the interval what provided relief from the terrible pain was injections of cortisone on the arthritic knees and on the different sites where flares were worse, in my case enthesitis junction points of bones with tendons. Could you ask for cortisone shots in addition to daily cortisone pills for stronger relief? Could you try cutting out gluten and inflammatory sugar while proceeding with treatments? All the best
thanks@letizia. The complexity of this (and many others) disease seems to only allow one to connect some of the dots while many others remain disconnected. We have much in common yet diversity abounds.
From my limited knowledge and reading, I have seen some correlation between diet and inflammation issues but I haven’t been satisfied with what I have discovered to come to any absolutes. I have tried short seasons of cutting certain foods out of my diet and adding things in but can’t seem to have any big revelations like, “I will never eat another tomato as long as I live”. There are just too many factors involved for “easy” answers and remedies. (i’m not implying that you are offering easy answers) (I could have retired on what my dad spent on magnetic insoles and copper bracelets to fix his high blood pressure)
If the steroids lead to accumulative bone deterioration, I have reason to be concerned. I have had numerous lower back cortisone injections and even more on my knees…and they all help for a while. Add to it prednisone for poison ivy, psoriasis and PsA and I think it is wise to stop with the steroids. But I have read numerous recent studies that indicate that prednisone in low dose over long term MIGHT not be so bad for you as was once thought. When in extreme pain, I do start to consider quality of life now over potentially less longevity. The fact that I respond so well to prednisone confirms that inflammation is my problem. I have very little OA and am in good physical condition but the PsA induced enthesitis pain eventually wins like a full bladder. Now I think I talk too much. Sorry.
I am relieved prednisone and injections may have your solution for pain relief, was only remembering past situations in my own journey to conquer excessive pain , what happened was as was recovering from fracture of the femur at hip level which had been grafted on to hip bone, hospital made me stop my methotrexate weekly shots to allow the bone to heal, At this point I was also without prednisone treatment, so the crippling pain in the knees, my psa elective site, came back with a vengeance, as well as cervical inflammation which had me lose my senses and be taken to hospital in an ambulance and on a wheel chair. At this point I was defenceless from the psa attacks on me, and it was reading about diet to lose weight (three years of cortisone had left me with 30 kg overweight) that I fell onto the ketogenic diet and intermittent fasting, This diet is followed by the US Army at the moment, and the fact that low carbohidrates resulted in the stopping of the pain and inflammation came as a surprise, for this reason I have not left it from that moment, even after resuming methotrexate and the biologic which I take to this day. The pain relief enjoyed at the time was certainly real. Hope all the best to everyone.
Gosh I so hear you on this one. I remember being there and thinking that too. It was one of the reasons I stayed on pred for a year. But this morning @Amos, I’ve just taken my first osteoporosis med. Can’t eat or drink anything for a hour which is not the way any morning should begin, even once a month, for me. I managed to ditch the notion of the once a week tablets and get on the once the month tablets. I’m kind of fiesty like that. Because like you I like I’m pretty determined to try and live my best life on a day to day basis. I’ve struggled for a year to accept I need osteoporosis meds too. But that’s solely because I’m stupid really.
But I spent the summer of 2017 with unexplained pelvis stress fractures, painful in the extreme. And I spent last summer with three compressed lumbar vertebrae fractures also painful in the extreme. And presently I’m having a hip issue investigated which thankfully the x-ray shows no break but still waiting on the MRI report. Pred and possibly also being post menopausal did this to me. My bone densisty is osteopenia but with this history it needs treating. I was also a severe asthmatic as a child so had loads of pred throughout those years too. Not a great history for bone densisty really.
That sheer horrible waking up pain thing is a pred kickback. It’s your body saying give me more pred now or I’ll make you pay for it. That level of it does ease down over the next few weeks - really it does.
Turning to pain relief. I take an anti-inflammatory called Arcoxia plus I take Tramadol. I vary the doses of both usually going as low as possible but also having the capacity to increase it when needed too. That varying of the doses keeps its sharper and working for me. But taking both together and often adding paracetemol to the tramadol too when needed like right now with this hip issue is pretty good. Paracetemol makes the tramadol work better. So potentially you can play more with your pain relief. It won’t give you the relief pred does but it certainly makes things more bearable.
So plod on for now. Yes it will be fairly miserable but the longer you keep at it, the easier it gets. It’s only 6 more weeks till September when hopefully the funding for the biologics comes through. Keep reporting to that wonderful rheumy of yours exactly how you’re doing too. Warts and all. Keep the pressure up for that funding.
And remember we’re all here anyway.
Thanks much @Poo_therapy! Good encouragement and today I begin another two days w/o the prednisone. Yesterday I took my scheduled 2.5mg and the difference in pain was/is a huge relief. I’ll look into the suggestions you made and WILL be off this stuff. It’s easy to get fooled by the amount of prednisone thinking that under 5mg is of little effect but that’s not how the body processes it. The influence at low levels is profound and worth serious consideration!
You really don’t. The more you chew over all this, the better.
Amos, the more you and everyone talks about symptoms and feelings, the more we can put our heads together and share the pain and the success. We are together in our disease, I know it made all the difference to me at the beginning, and it continues to do so.