Pred dose??

[Leepeelee]

Hi

I hope you are all managing ok during this very stressful time?

I have been on 12mg preds, have been taking the preds as a split dose 7mg in the evening just before bed time then the remainder at about 10am with breakfast

I fell at work 10 days ago and broke some ribs which has been extremely painful, I was to afraid to go to a&e for X-rays due to the dangers in becoming infected with the virus. My doctor advised over the phone that I rested and took some painkillers etc . I have been self isolating away from my family in a caravan on the driveway. This has been quite stressful!

My ribs seem to be healing very well so far, the pains have reduced massively, I am now able to cough and laugh etc which are s a good sign. I felt that now would be a good time to try and taper my preds dose by 1mg from 12 down to 11.

I started the taper 2 days ago, some slight pains have returned in my arms and shoulders but not to bad so far.

When I took this mornings half dose at around 10am, I took it but wasn’t sure if had already taken it or not! So, I might have accidentally doubled up on the dose this morning ! I’m not 100% sure if I did or not.

Should I skip the dose this evening or take it anyway???

Thanks in advance

[piglette]

Just carry on as normal. At least you took too much not like me who forgot a dose, ouch!

[DorsetLady PMRGCAuk volunteer]

Take it anyway....one day of extra is better that not enough.

Personally I would be inclined to leave taper for another week or so particularly as you say you are stressed .......but it’s up to you.

[Leepeelee]

Ok thanks.

My doctor has only been giving me month supply of medication each time, is this normal? I asked for more but he said I’d need to send in my repeat prescription 2 weeks before I need it?

[Yellowbluebell in reply to Leepeelee]

Yes i only get a months supply at a time.YBB

[carolBF in reply to Leepeelee]

Me too, most doctors in our town (Shrewsbury) only give you a month supply unless you are dropping your amount say from 10mg to 9mg and need some 1mg as well as 5s 😃

[PMRpro Ambassador in reply to Leepeelee]

Point out to them it means you will have to go out more to get the prescription. Monthly really is a piece of nonsense - you aren't going to stopping any time soon - and we are the least likely to leave the pack in the cupboard and not take them!

[Blearyeyed in reply to PMRpro]

Unfortunately , it is the UK restrictions , a month at a time for steroids , very few exceptions.

[Leepeelee in reply to Blearyeyed]

I contacted my Rheumatologist yesterday ( he called me) I asked his advise on monthly prescriptions, he said that if I were still one of his patients, he would prescribe enough to last 3 months at a time but as he has now signed me off and back over to the care of my doctor, I have to go with whatever my doctor recommends with regards to how regular the medication is prescribed.

Seems pretty odd, especially at the moment when social distancing is so important

Does anybody here use the online method with postal of medication?

[Blearyeyed in reply to Leepeelee]

Yes the Specialists have more flexibility , the GP has to follow different prescription guidelines . It's very annoying , especially at the moment . Some of my prescriptions are only for 28 days , others 2 or 3 months , it makes it harder to keep track of your stocks and causes the need for more trips to the Surgery.

[HeronNS]

I hate to disagree with the others, and normally I would side with them that you shouldn't taper right now. But I think if your actual PMR symptoms are under control (this is important) you should carry on the taper. Do it slowly. In the present situation if you can get down closer to 10 mg that will be all to the good. But of course PMR control is the number one goal for you.

Never skip a dose even if you took too much the time before. The only result will be an extra good day! We've all done this, either forgotten a dose or taken too much. Someone the other day posted she'd taken some of her son's 5 mg pred instead of her own 1 mg!

[Leepeelee in reply to HeronNS]

Hi HeronNS,

Thanks for your reply.

Is it safer to be around the 10mg area at the moment then?

[HeronNS in reply to Leepeelee]

In terms of your immune response, yes. But there's no point pushing to it if your PMR isn't ready. My whole philosophy regarding pred and tapering has been to carry on as long as the PMR which had disabled me was under control. I didn't stop for other things, like fatigue. I didn't increase it for stress, except once, near the beginning, for one day. At lower doses, like around 2, I had a couple of relatively minor flares which I was able to squelch within a few days and get back close to the dose at which I'd flared. I tapered using the dead slow nearly stop plan (DSNS) once I was at 10 mg. from 15 start. I started in 2015 and had got to 3 by the end of the first year, but this is by all accounts fast. I think I am one who metabolises pred very efficiently. Some people get the benefit of only a percentage of their dose. I don't know why. But it has taken me since 2016 to get to this point, which is tapering to zero. If you need 11 to control your symptoms and avoid a flare, stay at 11. If you are good at 11, then keep on going. But not too fast. You never want to go so fast you miss the point where you've reached the lowest effective dose.

[carolBF in reply to HeronNS]

Better to take more then less.

Not sure if other people are the same but I taper if I am not in pain, in the places I usually get my PMR pain

My doctor advised me to reduce 1/2 mg every 3 weeks, which seems fast, I have done this twice which seems ok, but if I go for a mile walk or do any gardening I am in pain for about 2-3 days in my hips, however this does pass x

[PMRpro Ambassador in reply to HeronNS]

The assessment grid has been revised so that you now score enough to be vulnerable with a pred dose above 5mg. There is no way she is going to get to 5mg quickly enough to make a difference.

[HeronNS in reply to PMRpro]

That actually makes a lot more sense I think. Nevertheless just as there's no point taking less than you need, neither is there any point taking more and as we know only the individual knows what is the sweet spot, the right balance, at any given time. I hope that was clear enough from my answer?

[PMRpro Ambassador in reply to HeronNS]

I was just pointing out a movement of the goalposts!!!!!

[Lola5670 in reply to PMRpro]

Could you please send me the link for the revised advice. Thanks so much

[PMRpro Ambassador in reply to Lola5670]

If I had it to hand, I would have included it.

As far as I know, the original links take you to the updated information each time. These are not website pages that are frozen in time.

[diana1998 in reply to HeronNS]

Better than my friend who gave the dog his pills and took the dog's by mistake!! He was fine but the dog had to go to the vet 🤣😂

[SheffieldJane]

I think your Caravan is genius! It will definitely keep you more quiet and still, for your healing. The proof is you thinking of a taper right now. I agree with everyone else, just proceed as normal with Pred in spite of the booster. It might be harder to sit still but this will wear off. You were right to avoid hospital. I guess the advice would have been the same even after an X-RAY .

I am sorry the isolation has been stressful, what is the worst aspect? I guess it’s a bit lonely. My OH is working from home having endless video conferences, so he might as well not be there and I have to be careful not to burst in with some domestic complaint in front of 36 academics.

[Blearyeyed in reply to SheffieldJane]

I'm moving into my campervan sometime next week when my daughters return home and I have to make sure they are Virus Free because of shielding .

They offered to use it instead , which they could of course , but I thought to myself , no , not on your Life , it's got all my art and craft equipment in it.

So I plan to live out there for a few weeks and have a jolly good time while convincing them to spring clean the house while they have to stay at home , cunning heh!! xxx

[SheffieldJane in reply to Blearyeyed]

What a cunning plan! I hope it’s cozy, we’re in for a cold snap.

[Blearyeyed in reply to SheffieldJane]

Solar Air Heating on tap , Toilet/ sink , kitchen , TV/ DVD with satellite Ariel so I can still boxset Netflix and Amazon, WiFi, sofas pull out into a giant king size bed, it's basically my mobile art workshop , I will use my bookshelves in the house like a lending library via the French windows. No other people or online school centre pinging with messages day and night. The landline phone can still work in it. Tons of daylight and windows. I think you can understand why I'm not sharing 😋

I may never go back in the house again , except to Sneek a Spa in the bathroom!

[SheffieldJane in reply to Blearyeyed]

You make it sound so appealing!

[Mack100 in reply to Blearyeyed]

I think I'll move into our motorhome after reading this, it's just sitting next to the house doing nothing other than being a very expensive unused toy! As you say it's got all the services on board and it's likely to be the only use it's going to get this year.

[Leepeelee in reply to Mack100]

Yes, in the last 2 weeks, I have learned to love my caravan, I feel extremely safe in here, being away from my family is difficult but it is them that I need to protect myself from!

I feel very lucky to have this option available

[carolBF in reply to Blearyeyed]

🤣🤣🤣

[Leepeelee]

Yes Blearyeyed, I like your plan!

I have been living n the caravan now for about 11 days. My partner works in the NHS an I have an 11year old son, I had to distance myself from them. The initial plan was for this to be for 2 weeks but now that my other children have just returned home (one from France and one from Spain!), the shielding period which we had set at 2 weeks will have to start again.

I am actually feeling quite lucky, the caravan is very cosy, everything works as it should, I have WIFI, Netflix etc ...... what more could I ask for!

[PMRpro Ambassador]

If you really don't know then take the evening dose - if you haven't taken it you will probably suffer if you don't. if you have taken it you will just have a really good day. Then just go back to normal. And get a suitable dosette box!