Increasing prednisolone?

[Rachmaninov2]

I have been taking 3 5mg prednisolone tablets a day for one week am supposed to reduce for a week starting today, have just taken one tablet today and left hand and fingers swelling badly, should I go back to 3 a day or wait to speak to GP on Monday. Any thought please?

Update.

I am taking 3 5mg prednisolone which are now not working as they did when first started, getting lots of original symptoms, ie swollen ankles/legs, painful/swollen hand, generally feeling shaky and unwell.

Have rung the Rheumatology helpline for advice as to whether to increase and if so by how much, but no call back as yet.

Any thoughts would be gratefully received please.

[helixhelix]

The official advice is always to talk to your doctor before changing any medication..... but I know what I would do😉😉

[Rachmaninov2 in reply to helixhelix]

Thank you helixhelix for responding so quickly, I understand, I did feel that it was rather quick.

[Lolabridge]

Coming off Prednisolone is usually done in a slow “taper” programme so by dropping from 15mg daily to 5mg is quite a large reduction. At least you could try taking 10mg a day and if you’re still suffering go back up to the 15mg a day until you’ve spoken to your doctor again.

[Boxerlady]

Obviously you should check with your doctor but when I had a short course while I was waiting for my first rheumy appointment, my GP told me 2 x 5mg daily for 2 weeks and then 1 x 5 mg daily for 2 weeks so it seems a bit quick to go straight from 3 to 1 daily 🤔

[Rachmaninov2 in reply to Boxerlady]

Sorry both, I wasn’t clear I should have said ‘have just taken one tablet so far today’ (I have just taken the second one). So now I feel that I need to go back up to 3 tablets a day from tomorrow. I had thought I would stick to what the Rheumatologist prescribed without fail but don’t want increased inflammation and pain!

I hope this makes sense, thank you both for replies.

Up till a week ago I had spent 7 months without medication, don’t want to go back to that pain etc.

(Just spent £500 yesterday because of a leaking loo only for the cistern to break today, spent day trying to get it fixed, no joy yet been told to wait till tomorrow. 2 weeks of migraines (2 a day) trying to get the medication sorted. FED UP (sorry)

[Hidden in reply to Rachmaninov2]

Hello Rachmaninov2 (great name!)

Two comments. Firstly I understood Pred should be taken in the morning because it gives you a "boost"; taken at night it would keep you awake. I used to take all mine first thing, however many I was on. Secondly, as others have said, you need to reduce slowly. I got a helpful suggestion from the rheumatology pharmacist, but it was when I was coming off the last 5 mg and so I had tablets that were only 1 mg. It involved alternating, for example, 5 and 4 mg per day for a couple of weeks and then having 4 daily for a couple of weeks, then alternating 4 and 3 etc. It was very slow, but successful. You could ask your consultant or pharmacist about doing something similar. You'd need tablets that have less than 5 mg to be able to do it. Best wishes.

[Boxerlady]

Maybe you need to take the full dose in one go (that's what I did) and then 2 tablets won't feel like such a drop? 🤔

[Rachmaninov2 in reply to Boxerlady]

Thank you for that suggestion Boxerlady, it’s difficult trying to find your own solution. If only there was a ‘one size fits all’ prescription which Rheumatologists could issue.

[crashdoll]

Sponges like a big drop which may be the problem. Are you in England? You could try NHS 111 for advice.

[Rachmaninov2 in reply to crashdoll]

Yes I am in England crashdoll, you are right they are very helpful. I have needed to ring them so often recently I’m afraid I will be seen as a hypochondriac. Like many others I hardly ever went to see a doctor before and this new me just doesn’t feel right.

[Rachmaninov2 in reply to Rachmaninov2]

Hello Bacharia (that is what I was listening to when I joined)

Thank you for your comments, yes it does keep me awake (I have been taking the third one at about 8pm)

Any understanding of why the Consultant Rheumatologist would have decided on that particular plan of action? (I realise that we aren’t medically qualified on here)

Best wishes to you too.

[Hidden in reply to Rachmaninov2]

If you have concerns about dosage or how to take your tablets e.g. all at once or split through the day, I can recommend asking a pharmacist. Truly they know more about those things than GPs because it's the main thing they've studied. I've had two instances in the last two months where a pharmacist has disagreed with a GP and it has turned out the pharmacist was right. Also, they are available to ask when GPs aren't, including at weekends.

[Mmrr]

These things often happen at the weekend...😪 when advice is not generally available, I know what I would, and have done in the past.

[Rachmaninov2 in reply to Mmrr]

I have decided to go back to 3 5mg tablets a day and ring the GP on Monday Mmrr.

I have read on here that I should be taking vitamin D and Calcium supplements with prednisolone, should my doctor have told me this?

I am beginning to feel that I not as informed as I should be by my doctors about this illness and the best ways to treat it.

[Boxerlady in reply to Rachmaninov2]

I wasn't given supplements either - maybe it's because we were both prescribed a short course? They might be more common when someone is on steroids longterm. 🤔

[Rachmaninov2 in reply to Boxerlady]

Ah, good thinking Boxerlady. There again I am supposed to stay on a 5mg maintenance dose, were you?

[medway-lady in reply to Rachmaninov2]

Please con't be confused by some advice as its long term Predisolene that can be hard to taper off and if you've only had for a week I'd think its unlikely to be down to the reduction so fast anyway. It is when taking long term you need Ad Cal to protect the bones and long term and high dose is very difficult to come down from . It took me two goes and very slowly like 6 months to go from 100MCG to 0. I'd advise you to ring the GP or RA nurse to get advice.

[Rachmaninov2 in reply to medway-lady]

Thank you Medway-lady, I will speak to the GP. I haven’t been given a R.A. nurse.

[medway-lady in reply to Rachmaninov2]

I hope you get relief soon sometimes a 'flare' (I hate that word) can just be random and overcome the steroids for a while anyway. I take a lot of stuff honestly you just get used to it, and my husband bought me a Dose It box for a joke Christmas present. Its come in really useful ! I'd not worry too much about the steroid dose 15mcg is not much but sometimes its worth doing one day 3mcg then the next 2 for say a week then 2 and 1 for a week. I avoid steroids now as much as possible but do think they play a very useful roll in reducing swelling until the medications kick in which can take up to three months. Ask your GP for a prescription for the Pred in 1mcg tablets its much easier to control if you think your coming off to fast with a flare taking place.

[Rachmaninov2 in reply to medway-lady]

Thank you for your reply medway-lady so helpful as I am just at the beginning of this journey, so much to learn.

A couple of my tablets have just broken in half and I have used them as normal, is this ok or does it affect the stomach.

[medway-lady in reply to Rachmaninov2]

I dunno for sure but I'm alive and I've broken them up. lol x

[Rachmaninov2 in reply to medway-lady]

🙂

[Boxerlady]

No I wasn't; it will be interesting to see what your doctor says although I think that 1mg is pretty low. Has there been any mention of a steroid injection? That's what I was given to tide me over until the meds kicked in and I think that most medics prefer them to long-term tablets if possible.

[Rachmaninov2 in reply to Boxerlady]

No mention of steroid injection.

I am floundering right now as I have several conditions (like many others on here) diagnosed in the last few months and many medications. I cannot possibly take all of them!

[Boxerlady]

It's such a minefield - you have my sympathy 💐 I now realise that I was lucky in that I got a clear, quick diagnosis.

Hopefully your GP will be able to advise you 🤞

[Rachmaninov2 in reply to Boxerlady]

Hopefully😟

[Troygirl]

I am FINALLY off the darn stuff and lost 40 pounds! It was 2 years of hell. Got a new doctor and she got me off the crap! Also, currently in remission. On 20mg of Avara and 300mg of hydrocholiquine daily. Amazing. She fixed me!The other doctor was treating me terribly. Had me on 20-30mg of prednisone for almost a year and a half. Also, had me on every high powered biological out there and still loaded me up with all that prednisone. My long hair broke off half way, developed Cushingoid, my hair stopped growing and had to wear pee pads everyday. Must have been from all the extra weight pushing on my bladder. I was a MESS! Once I was down to 5mg a day the weight came off super fast, my hair is growing again, and no more pee pads! From 154 down to regular weight of 114.

I am so happy I changed doctors! Good luck guys. Ra is terrible thing, but it can be fixed. Finding the right doctor that really cares is a must!

[KittyJ in reply to Troygirl]

Wow that’s such good news for you Troygirl. You were having such a tough time. Glad you’ve got it all sorted now.