Urgent help needed

[Uglow]

I dropped prednisone to 15 from 17.5 last night absolutely in agony my back and hips can I take 20 mg for couple days

Thanks

[MrsNails]

I’d say it’s a bit too soon to think it’s the drop in Pred, have you tried an over the counter pain killer eg Paracetamol if you are in the U.K.?

[Uglow in reply to MrsNails]

Paracetamol don’t touch it and I can’t take ibuprofen so I’m a bit stuck

[Linny3]

That is a pretty big drop. Maybe go back to 17.5 and start again.

[123-go]

Hi Uglow. I see from your past posts that you were diagnosed 2 months ago and were prescribed 15mg Pred. You seem to have fluctuated between that dose and 20mg since then. Were you ever pain free on 15mg?

[Uglow in reply to 123-go]

No not on 15 😢

[123-go in reply to Uglow]

In that case you may not have been on the correct starting dose. I would say go back to at least the dose where you felt most comfortable and follow one of the tapering programmes suggested. Are you managing your doses yourself?

[Uglow in reply to 123-go]

My Gp told me to go down but I think it’s too quick when I first got it I took 30 mg and it worked so quick

[MrsNails in reply to Uglow]

30mg is a fairly hefty dose to start on, l noted you said you take it at night, any particular reason?

[Uglow in reply to MrsNails]

I was really fuzzy headed thought it may help with that. It hasn’t really do you think I should go back to am

[MrsNails in reply to Uglow]

It’s really best to start taking the Prednisolone as prescribed in a morning before 9am

You will read on here about people who tweak their doses, taking it at Night, taking it a 2am, Splitting the dose but these are long, long time suffers who now have No Adrenal Function & through Trial & Error find what works for them.

You are New, l’m not sure how New but you really must follow your Consultants Directions so they can see how it’s working.

You could go back to 20mg as that’s where you felt well & just drop by 2mg, it’s recommended that we never drop by more than 10%

You could use one of the Slow Tapers you’ll find on FAQ - on Pinned Posts or below in a Highlighted Post if you can’t find them just let me know.

Kind Regards

MrsN

[Uglow in reply to MrsNails]

My Gp said she’s kinda learning on the job with polymyalgia she has now refereeing me to a rheumatologist I’m gonna take 20mg but I can’t really wait now til am cozI’ll have no pred in me since 9 pm what to do!

[PMRpro Ambassador in reply to Uglow]

Take about half the dose to carry you until the morning - if that's what you mean, to get the dose back to mornings? It's like we use when travelling across time zones. Taking about half your dose will carry you through the extra hours until the morning dose is due

[Uglow in reply to PMRpro]

Why doYou say morning is better

[PMRpro Ambassador in reply to Uglow]

It isn't always. But that is what the rheumatologists use and recommend. You need to get to know YOUR body and YOUR PMR before you can try different approaches. I thought that was what you were asking when saying you'd had no pred since 9pm last night, that you wanted to go back to morning dosing

[Boss302Fan in reply to Uglow]

You need to discuss with your Rheumy and put together a plan as to how to handle different scenarios. I’ve only been at this for a hair under 2 yrs and an idiot hospitalist in the ER started me at 80mg Pred when I had no signs of GCA. No matter water under the bridge, I’m at 4mg now.

As you get below 10mg/d if you aren’t already you’ll want to migrate your dose to early morning (around 3am is ideal, but I do mine around 8 am for convenience). You want your steroid level as low as possible around midnight so your adrenals will have higher probability of producing cortisol. But that currently isn’t the issue. You’ll have plenty of time to migrate what time you are taking your dose.

My Rheumy initially had me take the pred around 8-9pm. Why? Because being sedentary promotes inflammation and taking the Pred in the evening hopefully will get you through the night and early morning until you start moving around. Another trick they may use is having you split your dose in half, taking half dose in morning & evening. This in essence also increases the overall dosage (e.g., taking 20mg as 10mg @ 8 am & 8 pm is similar to taking 22-23mg once per day). This helps some people.

If 2.5mg drops are too much then go back to the last dose where you felt ok. Stay there a few days, then try tapering at a smaller interval, say 2mg, 1.5mg. or 1mg. You didn’t give much info. Like did you do a sudden drop from 17.5 to 15 (how long were you at 17.5 before dropping and are you doing the stairstep reduction or are you following one of the DSNS tapering methods?). If DSNS which one and what week and/or day were you into it when you attempted 15mg? When you took the new dose how long after did you start feeling pain? How long are holding at a given dose before going from an old dose to a new dose? Lastly, if you start, or are, feeling pain at a current dose for gawd sake don’t decrease your dose! The pain is an indicator that your dosage is not adequate to manage the inflammation (PMR).

If you have a nutbag doctor whose motive is to get you off Pred ASAP instead of managing the disease, find another! So short answer, if I dropped in dose, and a 3-4 hours after I took that dose and felt pain, I take extra milligrams to get me back to the dose I was, in this case 17.5-20mg. It’s not going to kill you. You were there before. Did 20mg take the pain away? Did 17.5mg? You are aiming for the minimal dose that will kept you pain free or close. If it’s not, you passed it and need to go back up.

I’m not a doctor or any other medical professional. But I think PMRPro will agree with much, if not all, of this.

[123-go in reply to Uglow]

I'm sorry. I thought it was 15mg. 30 to 15mg in two months is, in my opinion, too fast. I hope you get all this sorted out soon and please do take the tapering advice: it's tried and tested and many here have benifitted.

[Uglow in reply to 123-go]

I had 30mg for two days then 17.5 for 3 weeks Gp then told me 15mg and I was in agony again. So from last 3 weeks 17.5 now she wants me to go down to 15mg I did yesterday and today my back groins killing me

[HeronNS in reply to Uglow]

That's the start of the problem. Starting at a high dose of 30 for two days then dropping by nearly half to 17.5 for three weeks. If you were okay at 17.5 then you really should have been advised to stay there for at least a month. Then some people do manage a drop to 15, but it is still more than 10% of the dose, so I personally think that 1 mg is better. As PMR said originally and I constantly repeat: it isn't slow if it works. Now you have to get back on track. Don't panic. Ease yourself back into that morning dose. For at least a few days treat yourself very kindly. If you'd broken a leg or had a bad case of flu no one would expect you to be 100% and really the early days of PMR are no different. You have a significant systemic disease and need to allow the medication time to do its work.

Once you are feeling as good as you are going to, and have been at that good dose for a while, only then is it time to start a cautious, slow taper. Given your experience I think your taper steps should be very small, probably using a slow taper method.

One of the problems doctors inexperienced in managing PMR patients have is the different way pred has to be used. They are accustomed to a shorter time and a rapid taper off as is used in other conditions. With PMR one is looking at months and years, not a few days or a few weeks and we have to learn to live with it and manage it. And what a doctor might consider a slow taper may be much too fast for a PMR patient. So as you say your doctor is learning along with you, then she needs to be an awful lot more careful than she has been so far and maybe she needs to read up on best management practices for PMR?

[Uglow in reply to 123-go]

Thank you

[Boss302Fan in reply to 123-go]

I think in the USA they use stairstep approach (stay at new dose for x weeks, then go to next new y dose).

When >40mg x=4 wks, y=-20mg | 40mg; x=4 wks, y=-10mg | 30mg; x=4 wks, y=-5mg | 20mg; x=3wks, y=-2.5mg | <=10mg; x=4wks, y=-1mg

That sucks, especially at the higher doses. A day after the drop to new dose feel a bit whozzy from the sudden drop in dose, then sometimes 3-4 days later pain because dose flew past what was needed. Stupid approach I think.

I learned about DSNS from spending hours on the internet and land on a website dedicated to PMR/GCA. Was this in the USA, heck no, in fact I still haven’t found one in the USA. My Rheumy acted like he wasn’t familiar with DSNS! He’s finally given up pushing back on me and is letting me do my thing or I should more accurately say works with me more like a partner. Probably since I indicate my approach plan and ask “what-if” (like if I have a major flare and have to jump +5-10mg, how fast can I reduce back down to where I was fine before?).

[123-go in reply to Boss302Fan]

The stairstep approach is worrying just to read, let alone following it. At least you found this forum and have convinced your rheumy to agree to a far more sensible approach. I commend you for persevering. 👏👏👏

[PMRpro Ambassador]

I think you need to speak to your doctor and stop messing about with the dose. You need to start with a dose that works, get stable and then taper slowly and steadily.

[Uglow in reply to PMRpro]

Iv not messed with dose I was just going to go up because it got really painful again going down! From 17.5 to 15

[PMRpro Ambassador in reply to Uglow]

Mmm- suppose it's how you look at it. Yoyoing up and down is messing about in my language. You need to go to the dose that works for you, stay there until both the symptoms are stable and the blood markers are back to normal range. Then if 2.5mg is too much for you at one time, even using one of our slowed tapers, then drop 1mg at a time.

[123-go in reply to Uglow]

Just as PMRpro says- "You need to start with a dose that works." When you're on that correct dose, you will need to stay there for 4 weeks, maybe 5. If you are pain free by then, there should be a good handle on the inflammation in your body which is causing the pain. Then you can reduce SLOWLY. When you're not on the right dose the inflammation builds up and reducing too soon puts you back. Your body is in charge, not the calendar, Uglow. We all have had to accept that it's not a race to 'get off' steroids. You are not alone in having problems, but managing Prednisolone carefully will see better results and you will be feeling so much better. Don't be dismayed at having to take a step or two back right now, it's exactly the right thing to do.

[Uglow in reply to 123-go]

Thank you for you kind advice

[Hildalew in reply to Uglow]

Is it possible to go back to your GP and suggest somehow that, as this a learning experience for BOTH of you, you work together on adjusting the dosage? I'm sure your GP doesn't want to cause you pain.

[Uglow in reply to Hildalew]

Thank you yes I’m waiting on call

[Dambusters]

My doctor advise reducing by 1mg a month when I was on 20 and then by 0.5mg a month after I reached 10 mg. It worked. I am down to 9 mg but stuck because we are in the middle of a house move and it is taking its strain.I'd go back to original dose and reduce more slowly.

[Uglow in reply to Dambusters]

I’m going to do that today I’m speaking to my Gp

[Verwood]

Hi Uglow Hi agree with Ambassador go slow, small reductions. I was lucky my doctor did his home work, kept me at 20mg for the first month then advised that I could tapper slowly but advising I doped only after 5 day without any symptom's. Reducing in 10% or less steps.

I also have split my dosage 1/3 morning, 2/3 late at night, but you have to fine what works for you which means going slow.

[Uglow in reply to Verwood]

Thanks

[Ngwee]

I started on 60mg of Prednisone, and it took ages to taper to 10mg. I feel that my life is wrecked as I've put on 14 kilos and I'm exhausted and still in pain, so on 800 mg ibrophen. It's a horrid desease. Good luck to everyone of you. I'm determined not to take Prednisone ever again.

[Uglow in reply to Ngwee]

Oh Ngwee how awful for you. I don’t have advice just compassion. This pain can be be overwhelming. Someone somewhere must be able to help you. ❤️🤞

[Ngwee in reply to Uglow]

Thank you, I wish you well too. X

[PMRpro Ambassador in reply to Ngwee]

The weight problem can often be managed relatively well. But don't diss pred in your preference for ibuprofen - it too has potential serious adverse effects.

Were you ever free of pain., or almost so at least? If you started at 60mg I'm assuming your diagnosis was GCA? And what do you call "ages" to get to 10mg? Are you still on pred?

[Ngwee in reply to PMRpro]

Hi and thank you for your reply.

I was diagnosed with GCA, by my GP. I had gone to A & E, with all the GCA symptoms, my CPR was 40. However the hospital sent me home as they advised a migraine headache. Thank goodness I saw my GP. It took me 10 months to taper to 10 mg Prednisone. At the moment I've not been taking it. I also have osteoarthritis in my neck, knees, hands and spine. I try to go for a walk however I'm so exhausted and breathless. Have a good day everyone. 🤗

[PMRpro Ambassador in reply to Ngwee]

"At the moment I've not been taking it."Are you saying you just stopped taking pred altogether? Suddenly?

In the context of GCA taking 10 months to get from 60mg to 10 is perfectly reasonable and how it should be done. GCA usually lasts at least 2 years and often longer.