Here we go again , dropped steroids Saturday feel like s*** this morning aching,shaking and bloody cold have to put up with it

[Alan55]

Good news is c rheumatologist on Friday could be interesting have a good day everyone Alan

[adrian_holland]

Alan

Good luck with the Rheumy.......

I have to say having yet to be diagnosed and so yet to be on any of the steroids am not sure, given the nightmare stories I keep hearing about the effects of coming off them, whether I am better off as I am struggling along without hem

[Alan55]

Thanks for your reply Adrian having been ill on and off for the last 21/2 years this latest attack on me 3 weeks ago has attacked every part of my body to be honest I will take anything they give me to stop this as I don't think my body could stand another attack like that one cheers Alan

[Purpletop]

You're right, not nice. I'm tapering down from 10mg to 5mg tomorrow and usually this is the worst for me in terms of withdrawal. Not looking forward to it but as you said, we rather take this then let lupus rampant. Stay strong.

[misty14 in reply to Purpletop]

Hi Purpletop

Just seen your reply about reducing steroids from 10mg to 5 and hope your not doing it in one go. I've been told to do it by 1 mg a fortnight or even a month as it's kinder on our bodies. Once you get to these lower doses it must be done more gradually. Good luckX

[Purpletop in reply to misty14]

Not if you're only on it few weeks - the drop by 1mg is for those who've been on steroids for more than few months. I've done this before - one time I had to go to 7.5mg for two weeks and then to 5mg because the drop was too sharp but that was after 3 months of steroids. I'm now coming down after 4 weeks (2 weeks at 20 and 2 weeks at 10) and am hoping it won't be too bad. The first 2 days after reducing from 10 to 5 are usually fine but then the body realises the shortage and I feel grotty for few days after but then all ok.

I love AND hate steroids with a passion! I love them when in a flare but hate them while I take them, you should see my puffy face now, yuk!

[misty14 in reply to Purpletop]

Hi Purpletop

Good luck when you reduce the steroids. I feel the same about them as you do, wish their side effects weren't so potentially nasty! I've just learn't from my Consultant I can stay on 6mg daily and go to 10 mg for a few days when flaring . Not sure how I feel about it because of the risks!.Take CareX

[Alan55]

Thanks purple top gone from30 to 25 c what specialist makes of this on Friday keep well Alan

[overnighthearingloss]

After the initial diagnosis I resisted taking any drugs for a good while but then I had a bad attack whilst abroad and a french doctor prescribed steroids which had an immediate effect.

At my next consultant appointment I agreed to starting on steroids. I have never managed to do without them since. When my dose has been increased to control a flare I seem to do ok to get back down to 10mg but have all sorts of problems whenever I am directed to reduce further. Doctors seem to think that because you can drop in 5 or 10 mg doses from a higher level it is ok to do the same when trying to taper down from 10mg. I know this is not the case but might as well be talking to a brick wall as the doctors with all their book learning have little understanding of the problems this brings.

Searching the internet it has made me aware that prednisolone could be prescribed in 1mg tabs and it might be easier to step down in a smaller graduation. But again this falls on deaf ears. The result being that I rarely seem to get below 10mg.

Alan55 a steroid injection might help you as these last for about a month and then you wont have all the tapering issues. Maybe that's what your consultant will offer. Pity all thats on offer right now is another 3 days of pain.

[Chapter in reply to overnighthearingloss]

Why don't you just cut up a few pills - I know they are already small but it can be done. Once I am down to 10mg I go down in very small increments, takes a few days longer but much easier on the system.

[overnighthearingloss in reply to Chapter]

Tried it unsuccessfully several times already. I need a smaller taper when i get to that level

[Chapter in reply to overnighthearingloss]

I understand, so just break up the pills. Start at 9 and a bit for 3 or 4 days, then 9, and go down slow over a month or whatever it takes. I know they aren't exact doses but we can figure it out. When you go under 7 it will take a bit longer to adjust but just give body time to catch up and then to 6. I know you know all this - how long have you been trying to get down? My doc recommended the drops of 5 but once I am down to 10, I do it my way. Sorry, wish I could do it for you!

[overnighthearingloss in reply to Chapter]

I see you are Canadian. Maybe the pills are slightly larger in Canada. They are already very small in the UK. An additional issue for me is finger ulcers/reduced digital dexterity which adds to the problem of dose reduction in tiny portions as I sometimes have problems picking up really tiny objects. Not ideal if its your medication.

[SarahHeney]

Took me a year to get from 10 to 0, much pain and hospitalisation for an adrenal crisis. But I cracked it. Alan sympathies. Adrian, sometimes you will not be given a choice as you will need to take them.x

[Alan55 in reply to SarahHeney]

Thanks Sarah glad u understand the pain I was in managing to control things at 25mg but my hands look like they have been attacked with a hammer take care Alan

[willow80]

Hi all

I reduced from 10-5mg but my consultant gave me the one mg dose as my others at the time were coated. This helped such a lot, however I believe around 8mg was the best but he wanted me down to five!

Does anyone know why GPs have stopped the enteric coated tablets? I am already on medication that can effect my stomach.

[Hidden in reply to willow80]

Hello willow80

I was taken off enteric coated prednisolone, because according to my GP,research showed that proton pump capsules, ie: omeprazole, lansoprazole, etc, were more effective at protecting the stomach than the coated tablets. However I hate the taste of the uncoated ones,. I think its just cos they are cheaper

Good luck with your withdrawal,, I can't get below 10mg/ day, and after 3 hospital admissions Dr's have finally admitted that 10mg is my baseline dose.Best wishes

[Hidden in reply to willow80]

Hi willow80, my coated preds were stopped by the PCT, saying they were more expensive. At least they were honest I suppose !!!

[Hidden]

Chemists sell pill cutters, we use them at work and are simple to operate.

The enteric coated tablets are more expensive than the normal pred. The 2.5 mg tabs only come in enteric coated. Having a supply of 1 mg tabs is the best way to reduce. Try not to take a mix of enteric coated and normal pred as they will be absorbed at different rates and may make you more symptomatic.

There is a theory that pred reduction should never be more than 10% of the total dose if you have been taking pred for a while. If you are taking a short course of pred then it's possible to reduce from 10mg to 5mg for example.

A lot of patients with PMR,who have to take pred for over 2 yrs, reduce by using the following method. 8mg on Monday, 9mg for rest of week. 8mg on Monday and Tuesday, 9 mg for rest of week etc. It seems to work for them. I have been trying to get below 8 mg and am going to try this method.

I think everyone who has had to take pred has a love/ hate relationship with it!

[Alan55]

Thanks everyone for fantastic replies this is such a great place to come to when u need help ,got rheumatologist on Friday and will let u know how I get on .keep well everyone .Alan

[willow80]

Thanks teapot65 and Keyes for your responses to my question on the coated prednisolone. I believe that it is because they are cheaper, plus no one told me not to mix coated with non, but it makes sense.

All the best to everyone.