Prednisone taper pack and flares

[Radiogirl]

My Rheumatologist has me taking 5mg Prednisone daily (along with my other RA meds). My pain doctor has prescribed Prednisone taper packs starting at 40mg and tapering down within a few days when a flare hits. I'm trying to get into my pain. doctor to ask about several new meds I've recently started between the two doctors, but I thought I'd pose the question here.

I've had 3 major flares within the last 3 months. One hit 24 hours ago and so this morning I gave in and took 40 mg of Prednisone. I was feeling mostly human again by noon. I did speak with my pharmacist and he thought the improvement could be that quick.

My concern is how often is it safe to take so much Prednisone? I try to refrain from grabbing it quickly, but during a flare it seems like all the other tools at my disposal don't work. I'm hoping we can get on top again with my day to day symptoms with my new meds...in time.

How frequently have you taken Prednisone at higher doses during flares? TIA for your input. Blessings to all.

[Lyndy]

Hi, pred is useful to keep you going while waiting for other meds to stabilise your disease. This ‘high dose tapering down’ pattern is the one typically used to alleviate pain.

However, if you get stuck using it, then it’s not so good. Long term pred is very bad for you and hard to get off. So I would suggest focusing on how and when these other meds are going to work and making sure they do. xx

[sylvi]

I took steroids on and off for years and every time i took it i put a massive amount of weight on. I won't take it now as its not worth it for me long term. 40mg is a high dose to take, how long has your dr told you to take the 40mg and how much are you tapering down at a time as you can't take that high dosage and then just stop. It is now on my records not to been given to me. xxxx

[Radiogirl in reply to sylvi]

I take 40mg the first day and then go down by 5mg each day until I maintain the 5mg a day. I gained a lot of weight when I took the 5mg of Prednisone along with Sulphasalazine, which did nothing for me . For 3 years my disease activity just kept going up. Then we tried Humira which worked but landed me in the hospital with a bad, scary infection. I'm hoping to get these new meds to a point where they're helping, then I'd like to drop the Prednisone, too. My pain doctor just put me on a pain patch, Buprenorphine. I'll start it tomorrow. I had been taking Oxymorphone and during my flare it didn't help it one bit. I had ice bags on each foot, my legs, hands, arms, and back. Quite the peculiar picture if I would ever let anyone take one of me! Ha! I've put on so much weight, too!

So good to hear from you Sylvi. I hope all is well as it can be in our crazy world. xxxx

[Lolabridge]

Hi Radiogirl. I'm wondering whether you are having a lot of flares and if so, why? Could it be that your RD is not as well controlled as it could be? Perhaps it's time to have a chat with your consultant to see if your meds can be tweaked to resolve the problem. It's not ideal to have to take such large doses of Prednisone on a fairly regular basis even if you are tapering of again fairly quickly.

[Radiogirl in reply to Lolabridge]

I feel the same way, Lolabridge. My RD is completely uncontrolled. My rheumy just switched me to Methotrexate, Flaquenil, Folic Acid and B vitamin combination capsule called Nufola, and lastly we restarted the daily Prednisone and Prednisone taper packs. I know it could take a few months before we know if any of that will work. My hair is already coming out in gobs and I'm not crazy about that. My rheumy didn't want to start me on a new Biologic right now until this stupid virus gets better. DMARDS aren't as risky, I guess.

Thanks for your feedback! xxxx

[Lolabridge in reply to Radiogirl]

Gosh you are having a rotten time atm. I hope the extra Pred gives you some relief for the time being. My RD is pretty well controlled now I’m on Rituximab after 2 years of suffering and having adverse reactions to the usual DMARDS. My next infusion has been postponed due to coronavirus but I’m coping ok atm with the help of the 7mg Pred I take daily.

Hope you are feeling better soon.

[Radiogirl]

On top of all of this I fell in a parking lot landing straight on my forehead. I needed some stitches, still have some headaches, eye disturbances and anxiety that strikes me sometimes. It was crazy! I had just come out of my physical therapy session for the rotator cuff repair surgery I had in February. Both shoulders needed surgery, but I fell and completely blew out my left shoulder. Not sure if my falls are simply stupidity based or balance issues . Arrrgh.

[charisma in reply to Radiogirl]

You are having a rough patch... the only time I took 40mg prednisone was before diagnosis and symptoms were so bad I was told by my PCP to go to the emergency room.

There, I received a prescription for the prednisone for eight days.

Great! In two days I was zooming around as if nothing wrong with me.

But PCP was not permitted to prescribe continuation as no diagnosis yet. It was hell for another two months till I got to the UK (took post op pain killers to prepare for the three flights trip plus travel at either end to and from airport).

Then I got seen via NHS Out of Hours service, prescribed Prednisolone and Tramadol, next day urgent referral done at GP emergency appointment set up by Out of Hours GP.

Recently, no DMARDs worked long term, had a year plus of ever worsening pain with three flares.

Drug infusions in Dec 2019 kicked in about 4-5 weeks ago. Relief!

It is such a difficult journey at times. I was on dose of 20mg then tapered to 10mg Prednisolone till pain lifted in last few weeks; tapered to 5mg then lowered dose by 1mg each week till stopped on Sunday. So am off that magic but dangerous drug; gained 12 lbs though.

Wishing success with current drug therapy, hope it finally works for you.

[bubblyalex]

I’ve been on 20mg since jan this year. When they tried to drop me by 5mg I was straight back up into problems. Now I am reducing by 1.5mg this week (so far I’ve been down that amount a week). Next week will be 2mg so I’m reducing by .5mg. With having had the steroid injection into my knees this appears to be working. Good luck with it. 🤗

[oldtimer]

That does seem a high dose of prednisolone (although I was once on 60mg but only briefly!). If you are not having anything else then it is a dilemma, but it does seem to me that you should be pushing hard for a better long term solution to start as soon as possible. I'm now on 5mg 'maintenance' having tried several times to come off altogether and had to restart after a short interval. But I am also on a DMARD (Disease Modifying Anti-arthritic Drug).

[Radiogirl in reply to oldtimer]

I'm sticking with the 5mg maintenance dose for now, too. Thanks for your reply. Blessings and cheers!

[Mollieharry]

The advice I got from rhuemo for prednisalone was after I reduced to 10 mg I think,to then drop dead slow and stop(1mg a month).also have you had your bloods checked recently particularly vit b 12.i was a bit off balance,fuzzy eyes and anxiety,pain down top of arms and thighs,pins and needles etc,before rhuemo asked gp to check for low vit b 12.it turned I was.loading dozing injections given and every 3 months after that.

[Fruitandnutcase]

I took a tapering high dose - I tempered down over three months, think I started on 40mcg or possibly 60mcg but started reducing straight away - when I was first diagnosed with inflammatory arthritis.

I ended up with steroid induced T2 diabetes. Fortunately I was taking part in a study into pre diabetes and it was about the time for my annual checkup. So it was discovered before it really got going.

I was later given them by a doctor for something else, can’t remember what for, I said I didn’t want them and why and was assured I wouldn’t have that problem. I should have been more careful - she was the doctor who told me I ‘was needing my holiday’ when I actually had Graves’ disease. Anyway, I believed her, took them but it was a very short course at a low dose and checked my blood sugar and sure enough it was elevated so for that reason I wouldn’t want to take them again even though I felt invincible - a bit like Wonder Woman when I took them for the inflammatory arthritis.

[Radiogirl]

You are wise. We do have to fight for ourselves sometimes with these docs, don't we?

The steroid taper pack is a miracle med when in a flare. Strong opioids don't help nearly as well. All our meds seem to come at potential great cost medically.

I hope things are going better for you now. Cheers, my friend!