BIT CONFUSED😟

[Lucylooloo]

I had to go back up on prednisolone from 7mg then 8mg then10mg as was having a flare. I ended up going to doctor and he suggested going to 15mg for ten days, ended up three weeks on 15mg and was great. Went back to doc and he then suggested I take 15mg one day then 10mg next day and continue this for a month. I brought precrespition to chemist and directions on it was very different to what doc told me. Due to me querying this ? They would not give me tabs until I got doc to confirm what I was to do. Unfortunately I could not get doctor, so I told chemist I would go with direction on tablets as they were, which is 8mg one day then next day and continue (7,7 6, 6, 5,5,4,4,3,3,2,2,1,1, then stop) just wondering is this right ? Or should I stay with 15mg one day 10 mg next day and continue this until I get back to doctor? Or would it be better just to stick with 15mg until I go back to doctor🤔🤔 Thanks for any help 🙏

[HeronNS]

The directions you've been given are for people on short term pred, not what you need to do at all.

However your doctor is also not right expecting you to toggle back and forth by 5 mg each day. Please don't do that. Do you have enough tablets to go down by 1 mg every few days, to 10, where you will have to start a much slower taper so you don't flare again? If I were you I'd try not to stay at 15 any longer than necessary, but a big jump down, including jumping back and forth between 10 and 15, will be very hard on you and probably be unsuccessful.

[Lucylooloo in reply to HeronNS]

Ah thanks that sound so much better, so I will take 14 tomorrow so will I take 13 maybe Monday ? Etc till 10mg ? Have plenty of tablets

[Linny3]

Hi Lucylooloo

I can't tell you how many times I have had the pharmacist come and talk to me because the prescription for prednisone was either wrong or they didn't understand how the dr. prescribed. In some cases the dr. prescribed incorrectly. One time they wouldn't give me the pred. until they spoke with the dr. It ended up being a 2 day wait.

I have always taken the meds as we discussed in the office. Often I message my dr. on line, so I have her answer in writing in the message she responds to, and I can use that for the correct dosage.

If it were me I wouldn't go down any more than 1mg every few days.

Good Luck

Lin

[Mary63]

Uk gurus will be awake soon. Looking at your profile I see you were diagnosed with GCA a little over a year ago. I think your taper which got you to 7 mg in 15 months or so was VERY quick and guaranteed to lead to a flare.

To follow the doctors suggestion and toggle up and down by 5mg every day is very unusual advice, and will make you feel appalling. To go down by 1mg every few days to zero Is what you would need to do if you were on prednisolone temporarily for something like a severe asthma attack, but with GCA will definitely lead to the disease rearing it’s ugly head again.

I see you went from 7 to 8 to 15mg to deal with a flare. So presume that it wasn’t until 15mg that you felt better?

I think you may need to stay on 15mg for a month or so and then start the slow taper ( never more than 10% lower with each reduction)

So I think both doctor and pharmacy are giving very strange advice. Doing what either of them suggest will risk you having another flare.

I know this doesn’t help you as you as you are now stuck between a rock and a hard place. Where are you? Can you get a second opinion? Or show your doctor what the usual protocol is? PMRpro will probably share a link to this later.

As I said at the beginning the experts will be along later. I feel for you being given such conflicting, and I would go as far as to say dangerous advice.

Mary

[PMRpro Ambassador in reply to Mary63]

The drop 15/12.5/10 is a common suggestion and alternating 15/10 to achieve 12.5 is also common as it doesn't seem to occur to a lot of doctors you can cut tablets! Also going to a much higher dose for a short time is a recognised way of getting on top of a flare - and then you drop quickly back to nearer the dose where you flared because you can without adrenal problems. Adrenal problems won't arise until below at least 10mg and there is an assumption that the flare was because of overshooting the dose you need. If 10mg doesn't work then you may need to start all over again - because sometimes a flare is because of a change in the activity of the underlying disorder.

[SnazzyD]

Sorry, still no gurus but I’d say neither is correct. The pharmacist is treating it like an acute course for someone who hasn’t been on long term steroids with probable adrenal shutdown. To stop them so rapidly could be detrimental. The GP doesn’t understand the unpleasantness of a wildly swinging dose after being on a steady one for long. So, you drop by 60% every other day, then what? It looks like a seesaw but no reduction. I am assuming you got symptom relief at 15mg. From my own experience of reducing I think I’d want to reduce by no more than 0.5mg every 1-2 weeks, so I could see what dose was still effective. However, I’ve not had a flare yet (GCA 18m and now on 4/4.5mg) and am not an expert.

Also, have you flared on Actemra? Is this regime really working for you? I don’t know what your flare consisted of but are you sure it wasn’t the horrible adrenal brick wall you can get on 7mg? I had headaches and horrible all over body pain.

I also realise it is easy for us to get on our high horses; it’s you who has to go back to argue the toss. Sit tight for more opinion.

[Lucylooloo in reply to SnazzyD]

Yes I was great on 15mg have been not sleeping since start of this (15, 10mg) the doc then put down on prescription as above (8,77,66 etc) to stop its all very confusing 🤔🤔 anyway about just over a month ago I was having very bad burning on my head felt really bad this all stopped when I went to 15, so I am not wise on the adrenaline thing don’t really understand it? So I am not sure if it was a flare (doc said I was having one ) . I feel maybe I should go by Heron advice and today take 15 then drop one tomorrow until back to ten ? Do you think that would be better 🙏🙏🙏thanks

[HeronNS in reply to Lucylooloo]

No, NOT as fast as 1 mg per day! Follow what PMRpro and a couple of the others have said. It can be fairly rapid at the beginning, but your body still needs time to adjust to the dose, and by going as fast as 1 mg per day you will almost certainly miss the dose you need just at this time, or trigger steroid withdrawal, which is hard to distinguish from actual disease activity.

[PMRpro Ambassador]

NO, NO, NO! That is the instructions for a standard short term pred taper for an acute disorder such as a chest infection. You will need to get the doctor to just write "as instructed" on the prescription if the pharmacy is going to be so silly. I would ask what he DID write.

And the alternating 15/10 may seem better to your GP but it is often very unsettling. You should be able to drop to 12.5 and then 10mg reasonably easily though and that would be a typical drop above 10mg. As long as you don't drop back to 7mg - obviously that wasn't enough at the time but you don't really know where it went wrong and maybe the activity of the illness has increased.

But as Snazzy says - are you SURE it was a flare of GCA/PMR symptoms? Being put on Actemra after a long period of pred doesn't mean you can drop the last 7 or 8mg any differently from the rest of us - the Actemra has no beneficial effect on adrenal function, it will return as you drop the last stages of pred slowly. Were the problems maybe due to poor adrenal function? They would resolve on 15mg pred too. But being on Actemra also doesn't mean you can drop relentlessly to zero - patients often still need some pred despite the Actemra though at a much lower dose.

[Lucylooloo in reply to PMRpro]

It’s amazing the battle I was having with pharmacy, doc reception, etc to get my medication then added to contact rhum in hospital who really has no idea where I am at as they may believe I am down to 2mg by now. Only for this site I would god knows, probably back in hospital

It’s also crazy how the effect of three days on 15, 10mg has me awake all night (there’s nothing else that could have caused this) What the doc wrote on my prescription makes no sense since I was on 15mg ??healthunlocked.com/pmrgcauk...

[piglette in reply to Lucylooloo]

My pharmacy have to listen to what my doctor prescribes and how they prescribe them. They disagreed recently and asked for my doctor to confirm what the pharmacist thought it should be which they did, but the doctor still was the main decision maker.

[sassyscript]

Hi Lucylooloo, I'd be very careful here! I'm on 10mg now since May,down from 60 in Dec 17, they want me to stay on 10 for a year. Last year I was going down 1mg per month 10-0, but when I got to 0 (was nearly better at the time) I had a big flare late last year and ended up right back where I started, may be worse. Please reduce slowly whatever you do! We are all different, but be careful. Seek as much advice as possible. Maybe 2 doctors

[Lucylooloo in reply to sassyscript]

Yes your right I am going to just reduce 1mg from 15mg for now and see how I feel, see we both diognoised around same time ? Only for this site hospital would also have me off steroids as per their plan as I also on Actemra good luck with your reduction I will be interest to see how you get on 👌💕

[sassyscript in reply to Lucylooloo]

Hi, thanks for responding so quickly

I have had it since 2016. Correct me if I'm wrong but I think you've had it longer. I'm in the states this week, from the UK

Going to see a neurologist here and see what he says. Good luck with your journey. S

[Lucylooloo in reply to sassyscript]

Same to you 🙏

[Grants148]

I hope everything works out well for you ,l cannot add to all the previous advice,l am also trying to deal with a flare and have not found doctors very helpful,they know what they are talking about on this forum through their own experience.Good Luck !

[Lucylooloo in reply to Grants148]

Thank you, yes this site is great it’s a pity some rummys don’t look on it. Although I mention this site And people seem to know it. What did your flare appear like ? It’s just been mentioned that it could be adrenal systems ? Also just wondering so next time I might be able to tell the difference 🤔🤔😳

[Grants148]

Hi Lucy,l am confused myself as to what is going on,my legs are really stiff ,knees swolen ,and also pain around my hips and lower back which eases when l get up and start walking ,well l should say staggering, about,l know l did not feel as bad as this before l lowered the steroid dose,l am not sure at all what to make of it as l do not have any pain around my shoulders or down my arms.l also have had dreadful brain fog for over a week now and do not feel as well in myself .l do not know anything about adrenal symptoms,l tapered down to 3 mg of preds.,and did not notice anything changing at the time.l did have a very erratic pulse last Wednesday night which seems OK now,l am hoping it stays that way.ATB.

[PMRpro Ambassador in reply to Grants148]

That sounds like a return of PMR symptoms - so maybe your dose is just a bit too low since you reduced the last time. The return of symptoms doesn't have to be the same as when it started - so hips and legs may appear first and arms later.

OTOH, have you got low back problems? That can irritate the sciatic nerve and cause referred pain into the legs.

[Grants148]

I only had lower back pain when first had PMR,l have sometimes had sciatica but my leg problem is very different ,they feel very tight and numb from my toes all the way up the back ,it feels like there is a tight strip of elastic pulling tightly,especially behind my knees.l took some paracetamol last night and they feel a little easier today,that has confused me ,l am not sure what to do and hope to speak to a different doctor tomorrow before l increase the steroids up to 8 mgs.l have only increased by l mg. so far.Thankyou for your post PMR pro.