reduction below 5mg prednisolone

Hallo Beev and sorry about the painful stomach Not funny at all.

Several years ago I had very unhappy gut and, because my GP hardly knew me, hadn't seen him for ten years, he referred me for endoscopy which showed nothing wrong. I was recommended to eat organic yoghurt and have had it for breakfast with muesli ever since ( about 15 years. )no more stomach irrtation.

When PMR came along I was taking 30 mgs for a time and reduced over 3 years to nil. Then PMR came back after five years. Started on 15 and have now reduced to 7 after nearly 3 years. All that time no gut probs and I have never had the coated tabs. Telling you all this in case you feel like trying yoghurt. Mine is the organic Yeo Valley and I have three tablespoons a day. Full fat. I hope this may help you. BettyE

Hi Betty

Thanks for that. I had an endoscopy too - before the onset of the lovely PMR. It showed an inflamed oesophagus but no cause. I sometimes have the organic Yeo valley yogurt - and did today as it happens - but low fat as am doing a Slimming World diet to try to lose the steroid fat!!

Do you take the pred with the yogurt or after it? I take my pred with milk after cereal etc..

I was on Omeprazole because of constant acid reflux symptoms before the PMR though - so my stomach is probably more sensitive than most to start with. I just think it must have been the uncoated tablets that did it as I've been ok for months before.

I will try your yogurt idea every day!

Beev

Hi Beev

That must be miserable for you having bad stomach symptoms and, like Betty, I also recommend the yoghurt if you are not already having it.

I was unable to tolerate the stomach protection tablets such as Omeprazole so have eaten a daily Yeo Valley Live Natural Yoghurt with my breakfast and before the steroids for the last few years and so far so good.

I also have a daily spoonful of Manuka honey which is also good for the stomach and which has many other health benefits such as boosting the immune system (especially helpful whilst on the higher dose of Prednisolone when the immune system can be depleted by the steroids).

I also start the day with a glass of warm water with a few squirts of lemon juice - good for the stomach as the acid turns to alkaline in the body.

I do hope at least one of the above will help you to perhaps revert back to \"Ragnar\"s method of reduction. It is the one I followed below 5mgs but even slower, taking about 7/8 weeks to get completely from 5 to 4 etc :roll: But hey ho, it worked. :D

Very best wishes and do let us know how you get on.

MrsO

Hi Beev & all,

I had the most sensitive gastric system on the planet before I developed PMR :oops: , but was started on a tablet called Protium with my steroids and can honestly say my stomach has not had any problems at all, even though I am now on 14mgs, so taking 2x5mg coated and 4x1mg non coated daily.

However...the Protium (40mgs day) costs me about 45 euro for a months supply (I have to pay for my meds up to a max of 120 eu per month) so I am not sure whether or not that particular drug is available to everyone in the Uk....they may well prescribe something which is cheaper, but not necessarily as effective. It would certainly be worth talking to your GP and asking if another drug might help to prevent the problems you are experiencing as it seems that you are having a lot of discomfort.

Good luck & hope things improve for you soon.

Best wishes, Pauline

Hallo again Beev . You asked when I have the yog. My regime is a bit unorthodox. My GP said to try taking the Pred at night. (9.00PM ) to see if it would help with some of the unwanted side effects and it did for no reason that anyone can understand. That means I have two lots of yog. one at breakfast and then another couple of dessertspoons with the Pred.

Like Mrs. O I have manuka honey and I take that with both lots of yog. They taste lovely together!

One side effect I don't get is weight gain ( well, just a couple of kilos ) so I am lucky not to have to watch my diet from that point of view.

Hope something works for you. BettyE

Hi again everyone

Does the yogurt have to be full-fat? I'm trying to lose weight!

Also, I've been having some jaw discomfort in the last few weeks since trying to reduce below 5mg..mentioned it to doc and he said I couldn't get GCA while on steroids.

I've been doing 4 days of 5mg then 1 of 2.5 for the last week or so, which he said was ok, but the 2 days after the 2.5mg, I had a constant headache and stiff neck so am wondering if that's because the 2.5mg was too big a drop even for 1 day. Can't seem to take the 1mg uncoated ones, so not sure what to do.

It's possible, I suppose that I'm not ready to go below 5mg yet. I started taking pred in Jan this year.

Thanks again

Beev

Beev

Sorry to say your GP is incorrect, you can develop GCA when you have PMR and vice versa.

read the BSR Guidelines issued June 2009 to be found on the NHS website, The British Society of Rheumatologists website or www.pmr-gca-northeast.org.uk There are a list of symptoms for GCA contained in those guidelines. You cannot afford to take a chance if two or more are present.

Sorry I have no more time at present to explain more.

Its not your GPs fault, they were not issued with the guidelines and as GCA is uncommon it can be misdiagnosed or missed.

Beev - just to expand what MrsK said;

It's not just that you can get GCA when you have PMR as the primary complaint, it's that the dose of steroids to deal with GCA needs to be much higher than the dose to deal with PMR so, since you at the dizzy depths of 5mg the GP is a bit misinformed! GCA steriod doses are anything from 40 to 60 mg so to say that 5mg would prevent GCA is a bit optimisitc.

And full fat milk and yoghurt is still only 4% fat - hardly a high fat food! It truly isn't the fat that makes you fat - it's combining it with highly refined carbs (the ones that are white in colour) and especially sugar that does the damage - as in cake and bread buns and so on. But, by the way, don't take TOO much yoghurt with your steroids as it has calcium in it and will affect the way you absorb the steroid. You need some fat to absorb the calcium to act as a carrier so don't reduce your fat in the diet too far. Too little fat doesn't do nerves any favours and you can get bad tempered! Probably the main reason people on a diet are stroppy!

EileenH

Hi Beev. I'm down to 5mgs from 15mgs in September 2009. I'm the one on the slowest of slow reductions :zzz: but its working for me (so far!) and wondered if it might help you. This is how I will hopefully get to 4mgs. Wk 1 - 5/5/5/4/5/5/5 Wk 2 - 5/4/5/5/4/5/5 Wk 3 - 5/4/5/5/4/5/4 Wk 4 - 5/4/5/4/5/4/5 and so on until you reach Wk 7 - 4/4/4/4/4/4/4. Its a bit of a palavar but I just fill a 7 day tablet holder and then don't have to think about it again for a week. All being well, you start all over again following the same pattern for the next 1mg reduction. I know its really, really slow, but there aren't any big daily reductions and my body hasn't yet picked up on what I'm doing (I hope to keep it a secret until I'm down to 2mgs at least). I can't manage the 1mg uncoated tablets without getting gut ache but I take Omeprazole without any side effects. I know quite a lot of people on this site can't take them and seem to cope very well with yogurt. Sadly that didn't work for me but I would try the yogurt route first if I was you, it would be good if you could do without yet another tablet! I haven't got stuck at a level yet but I think if I did I would just leave a lmg reduction out for a week or two see how it went. Hope the aches and pains go soon (weather doesn't help does it!).

Lizzie Ellen

Hi Beev and everyone,

I too have been trying to get below 5mg, and my GP has not let me have any 1mg. Tried with just 2.5mg every 7 days, but didnt work ,so am now on 5mg all the time, I decided it was maybe too soon to cut down, especially with xmas on the horizon !!! Will try in Jan. again, Have been on the pred. since Oct.09, but am also gaining more energy and so doing a bit more than I used to, and think that may also be a factor.

Hallo RBLO I wonder if there is a good reason for refusing you the 1mg tabs?

I cannot remember whether you are having the coated sort??. If just the bog standard, like me, you can cut them easily with a Boots pill cutter. In the wonderful days when I was almost off Pred. and told to go very slowly, I was even cutting them in quarters.

I think you are due an explanation for the refusal. Good luck BettyE

Hi all of you

I haven't been on here in ages due to being busy at work and then Xmas etc..

Many thanks for all your comments and suggestions.

I am doing a gradually reducing regime along the Ragnar principles but avoiding the 1mg uncoated tablets. So far so good and am on 5/2.5 alternate days.

You might all be interested to know that I was referred to see a consultant (general surgery not rheum) - about my jaw problems - my GP was concerned about the possibility of a rare side-effect of the Alendronic Acid (osteo-necrosis of the jaw).

Well, the specialist said my xray showed nothing and was going to give me a scan but, as it had been quite a lot better, decided not to. However, they had told me to stop the AA tablets several weeks ago and the specialist said I should NEVER take anything in the bisphosphonate family again as it was probably due to that and it can be very nasty. He told me to take extra Vit D3 (1000 units) on top of the Adcal tablets which have some D3 in them.

I also spoke to him about the acid reflux and he agreed that I should avoid the 1mg uncoated tablets and that I should get off the Pred as soon as possible.

I have seen that there has been a lot of discussion on here about Alendronic Acid - so beware - if you get an aching jaw etc..

All the best and Happy New Year

Beev

Re Alendronic acid. I have posted on the subject before but your experience, Beev, prompts me to repeat myself.

I did not have jaw pain but did, after about 6 doses ( 1 a week ) wake up wheezing. Unheard of, never ever had even a slight cough before. Was given Penicillin in case it was an infection and a few days later had the most violent reaction, covered in a rash that looked like chicken pox but wasn't Sent to hospital and treated with some concern. All was well, though. Told to increase Pred. for a week and eventually the reaction subsided.

What I find interesting is that my file is marked no penicillin, no bisphosphonates. It might have been either/or or a combination that caused the reaction but was told to never take either. I made myself a red card which I carry with my mobile and my blue steroid card.

I know three people who take Alendronic acid, none of them PMR or GCA sufferers, and they don't seem to be having any trouble and I know others on here get on ok with it so I guess you and I, Beev are special cases.

Good luck with the reduction and the acid reflux. BettyE

Hi All,

not posted for ages, nothing of interest to say really. Would like to pick a few brains from you kind ladies on reduction from 5mg. Been to GP this morning with chest infection, and whilst I was there I quizzed him a bit about reduction from 5mg. When I last saw my rheumatologist, he said he'd see me again before I got down to 5mg, but in fact that won't happen as my appointment has been put back a couple of months. My GP said I should hold 5mg for 12/18 months!! Well I nearly fell off the chair!! I was hoping to be off steroids altogether, before 12/18 months from now!! He said it's up to me of course but he wouldn't even consider reducing further until I'd been on 5mg for 3/6 months,There's a lot of difference between 12/18 months and 3/6 months, why can't they be a bit more precise, or is it me expecting too much of the poor souls? I'm on 6mg at the moment, having come down from 15mg since 12th October 2010.

I wonder why 5mg is such a sticking point, and would love to hear other peoples experiences of reducing below that.

Many thanks,

Molly.

Hi Molly

My rheumy wanted me to stay on 5mgs for about 7 months after experiencing a flare, increasing to 10 and tapering over several weeks back to 5mgs. I baulked and we compromised at 4-5 months.

Firstly, it would be wise to not even contemplate reducing further whilst you have a chest infection. Such infections can so upset the balance of reductions if you are unlucky.

Secondly, the usual recommendation once at 5mgs is to stay on each subsequent dose for 3 months as the percentage drop at these low doses is so much higher than on the higher doses and the body needs more time to adapt to the reduced dose.

Interestingly, when I attended the Members' Day of the National organisation, PMRGCAUK, in London recently, a rheumatology professor gave a presentation covering his latest research. This involves taking a time-release steroid starting dose of 10mg at 10 pm at night. He believes that this resolves the early morning stiffness. However, that starting dose will be taken for about a year whilst the inflammation continues to subside - it is believed that this lower starting dose taken in this way will have fewer side effects over the longer term.

I must admit that your GP does seem to be hedging his bets a bit! 3/6 months or 12/18 months - how very confusing.

So, it's really a case of listening to your body and how you feel - if you haven't had a recent flare then if it was me, once the infection was well and truly over, I would commence the reduction to 5mgs and then stay on that dose for 3 months and then if all is well, continue to the next dose but go really slowly with the tapering - I did it in half mg reductions.

Hope that helps. All the best and do keep in touch.

MrsO