Posted , 7 users are following.
I started Prednisolone last July, 15 mgs. For a few weeks I had the energy of 10 mad women and felt fantastic before reaching a plateau. I've tapered quite well, without too many problems and at New Year went to 6mgs.
Since then I am so tired and generally my body feels as if I have been doing physically strenuous work, which I haven't. That is how I felt before completely stiffening up and diagnosis last year.
Because of the fatigue I am often late getting up and therefore late taking the Pred. Is this part of the problem maybe?
Any advice on getting back on track are welcome. Thank you.
0 likes, 21 replies
EileenH linfran
Posted
You have now got to the stage where your body has to start producing its own corticosteroid, cortisol. While you are above the equivalent of 7.5mg pred the body thinks it doesn't need to produce more because, a bit like the heating boiler, it knows there is a load floating around. 7.5mg is what is called the "physiological dose" but different people absorb different amounts of pred - anything from 50% to 90%, so for some people that point of making their own comes earlier than others but in general it comes soon after about 8mg.
Below 10mg dropping 1mg at a time is a lot - for successful tapering no change in dose should be above 10% of the current dose - and you have just tried 14%. Your body is telling you you have done too much and is telling you to slow down.
This link
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
takes you to a post with a load of links for reliable information about PMR and GCA. In the replies section you will find a slow tapering schedule that has worked for a lot of people to get lower than ever before with fewer problems. Some people can manage 1mg doing it like this but for others even that is too much and 1/2mg steps are better. It is being used in a clinical study in the north of England and the feedback from the study leaders is good. If you go back to 7mg you will probably find you feel far less fatigued - but it also gives the body less of a stimulus to start producing its own. If you try 6.5mg by cutting the 1mg tablets you may find a happy medium, Stay there until you start to feel better and then try the next 1/2mg.
Anhaga on this forum has adapted it slightly and has found she has been able to reduce steadily down to 3mg but even so she had a couple of hiccups. Each time she went back to the previous dose waited a few weeks and then tried again. That often works. One top PMR expert likes to keep people at 5mg for some months to let their bodies "catch up" and then the rest of the reduction seems to work more smoothly.
You have actually done very well to get from 15 to 6 since July - and this isn't a high speed race. The tortoise won by crawling steadily along - so can you.
linfran EileenH
Posted
Hello Eileen, I'm glad to hear from you and thank you. I did know about the adrenals needing to wake up and had estimated it would happen around Christmas/NewYear. But do you reckon perhaps I'm not being disciplined enough about taking the Pred earlier in the morning?
My GP's tapering programme for me advised tapering by 1mg every 4 - 8 weeks. Maybe I should aim for every 8 weeks instead of 4 or take 6mgs and 7mgs alternate date.
What do you think?
EileenH linfran
Posted
Your GP may have a programme in mind - your body may not agree! Yes, I think every 8 weeks may help - but so would 1/2mg drops and that might make the shock to the system less each time. The smaller the steps the less the body protests. Alternating 6 and 7 may work - but everyone is different.
Even if you aren't ready to get up- do you wake early? try taking your pred about 6am or earlier and settle down for another couple of hours - then the pred will be working on the PMR by the time you want to get up. But if you simply haven't got enough steroid in your system it will still leave you feeling fatigued.
linfran EileenH
Posted
Ah, well I have the most erratic sleep pattern and this is nothing new. The worst times are what I'm currently experiencing: can't get to sleep for hours, finally managing around 5am and sleeping soundly till maybe 11am. Other times I drop off relatively quickly but wake several times during the night. At one point I was waking up naturally around 7am and taking the Pred then. (Is it really important to take it with food?) after I'd go back to sleep as I hadn't had enough.
What a mess. Good job I'm retired!
EileenH linfran
Posted
linfran EileenH
Posted
EileenH linfran
Posted
Strangely, I wasn't offered the PPI - took one a few times while in hospital here in Italy as they gave them to me. When I was discharged I discovered I would have to pay the full price for them on a private prescription. Never having used them before I decided I'd carry on without. Hasn't been a problem so far.
Anhaga linfran
Posted
When I was reducing to 7 I was hit with the most terrible fatigue. I felt sort of "flat" like I had no will to do anything. Of course I did carry on, but without much zest. Every reduction since then has come with its own load of fatigue, or listlessness. However now that I'm in the process of breaking the 2 mg barrier I've had the occasional day when I've felt some unaccustomed energy. It just takes time. It's taken me about a year to get from the start of the fatigue to today, and I know there is still a way to go, but there's hope!
And yes, you should have food with your pred, but many people here say just a few mouthfuls of yoghurt will do.
linfran Anhaga
Posted
When did you start on the Pred, Anhaga?
Also isn't it difficult to accurately halve the 1mgs?
Anhaga linfran
Posted
I started pred June 2015.
Until I recently used them all up I was cutting leftover 5s in half. I have a little (free) pillcutter the pharmacist gave me and it works well enough. I don't think total accuracy is really all that important. What I lose one day I'll gain the next time I take 2.5 and as I'm alternating 2 with 2.5 I don't think the mcg inaccuracy will have much effect.
EileenH linfran
Posted
It doesn't make that much difference whether it is accurate or not - you are after all aiming to reduce the amount of pred you are taking. It doesn't make that much difference whether you are taking .48mg or .52mg of the cut tablet - either way it is less than 1mg! And it will balance out over time.
In fact, taking pred isn't an exact science anyway - your body only absorbs between 50 and 90% of the available pred, it varies from person to person. That's why you take a dose that will be plenty to do what you want it to do and then titrate down to find the lowest dose that works. For me it may be 7mg, for you it may be 5mg - it doesn't matter as long as it is enough.
Even a glass of milk is OK to take the tablets with, whatever is convenient.
diana21296 linfran
Posted
pauline_56032 linfran
Posted
Hi
I have just come across this site but so glad I have as i have felt a bit lonely with this condition because as you know you can't explain and people can't imagine how painful this is.
I was diagnosed around sept 2015 and like you I have been trying to come down slowly on my steroids. I started on 15mg and have now tried 4 times to go from 7 to 6mg, everytime after about 3wks I have had to go back to 7mg as the pain gets unbearable, I have tried doing alternate days 7mg one day 6mg the next and so on I get a bit achy but I manage it with co codemol, but I just can't seem to go down to 6mg which is really upsetting me as I desperately want to get off steroids!!!
My pain is bad again at the moment but I'm wondering if it's the cold weather effecting it.
It would be interesting to hear from anyone who has had this condition and has actually managed to get better and to get off the steroids and whether or not they have had any relapses.
Sorry if I've gone on but it's just great to fine other people who know exactly how your body feels everyday.
Anhaga pauline_56032
Posted
You might enjoy reading some of the posts on this thread:
https://patient.info/forums/discuss/zero-prednisone-discussion-450915
Most people who are posting here are currently like you, living through their journey with pred.
Have you tried the dead slow nearly stop method?
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
Yes, cold weather can affect you. Yesterday I felt chilly, despite the thermometer saying the house temperature was the same as always. Must have been the very damp air in our recent weather. I had also done something to my back, not sure what, and as I lay sleepless in discomfort I thought, this is just what the bad days pre-diagnosis were like. I hope this isn't a flare! Fortunately it does seem to have been a "mechanical" problem and I'm much better this morning. You are quite right, it really is impossible to decribe the pain to anyone who hasn't experienced it. When I found this site, in the middle of another sleepless night about sixteen months ago, I felt I had fallen among friends. ?
EileenH pauline_56032
Posted
Everyone wants to get off steroids asap at first - until they learn to accept that the pred is handing them a lifeline to normality. But you need enough pred to manage the inflammation and the reduction is not to zero but to find the lowest dose that manages the inflammation. You have found it at 7mg - which is a pretty low dose and the same sort of amount of corticosteroid your body makes naturally and which is essential for life.
it doesn't matter what you try, as long as the underlying autoimmune cause of the inflammation that causes the symptoms we call PMR is active you will need some pred. And you need enough - taking slightly too little is no better than taking none, in fact it is worse because allowing symptoms means there is unmanaged inflammation in your body and it can over time increase your risk of other diseases such as cardiovascular disease and even some cancers.
There are 3 ladies I know personally, not usually on this forum but another, who have had PMR twice. Two got off pred the second time, the other is still working her way through. But there are quite a few people who have been on the forums who have got off pred - but very few hang around here now, they have better things to do and don't need the support.
pauline_56032 Anhaga
Posted
Many thanks for your reply.
I followed your link and read about the slow way, that's really interesting and definitely worth a try. I only went back up to 7mg on Monday (16th) so I will give it a couple of weeks before I try again but I'm definitely going to give this a go.
I was told it would take around 2 yrs to get better but it's now 17 months and I'm still only at 7mg , I get so frustrated with myself about everything, silly things like trying to stand on a chair you can't explain about having no push in your legs to push up with (if that makes sense) or if your on the floor not being able to get up without seeing pains in your legs, I hate it.
But now I can give this a try and hopefully it will work for me.
I'm glad yours wasn't a relapse hopefully when it gets warmer we will all feel a bit better.
pauline_56032 EileenH
Posted
Hi
I know what your saying I just have to be patient and as my husband always points out compared to how I was when first diagnosed I have come along way I just hate being dependent on drugs but needs must I suppose.
Thankyou all for your replys at least now I have found this site i don't feel so alone.
EileenH pauline_56032
Posted
Someone on another thread has just mentioned an Italian paper where they say about PMR not being a benign condition as they used to think - and that 30% of patients are still on pred after 6 years. There is a paper/article somewhere (I can't find it now) where top US experts reckoned that about a quarter of patients are off pred in under 2 years but are then at a greater risk of having a relapse. About half take between 4 and 6 years and the rest of us take even longer.
But doctors STILL tell patients that they will be on pred for a couple of years - even though 3/4 of them are never going to fulfil that prophecy. It isn't their fault - their doctors set them up to fail by saying something that is not going to work.
Don't get your hopes up - however slowly you reduce, however carefully, you will NOT manage to get to a lower point than the dose that manages the inflammation. The dead slow approach usually seems to allow people to get to a lower dose - but not always off pred altogether.
Which is worse: being "dependent" on pred or being dependent on others and being unable to do things? I had 5 years of PMR with no pred - I was almost housebound and couldn't go anywhere I couldn't drive to and park close by. I had often gone to do something and gone home because I couldn't walk far enough. Rarely happens now I am on the right dose of pred.
daisylazy pauline_56032
Posted
hi Pauline
Havnt been on here for a while but just thought id share my journey .Diagnosed oct 2014 Started on 20mg.Reduced by 2.5mg monthly until i got to 10mg and then on Eileen's and other members on this wonderful forum's advice i used the DSNS method reducing by .5mg every six weeks .I am now at 3mg with no flare but some fatigue and feel its the best way to go .After joining this forum i never went back to the rheumy because she wanted me to get off steroids faster .As we all know everyone is different but thats my story and all i can say is finding this forum and following the advice given has saved my sanity . Good luck with your journey .
pauline_56032 daisylazy
Posted
Hi daisy lazy
Many thanks for your reply.
Finding this site is the best thing I have done as people have given me different ways to try to cut down/get off the steroids.
I will definitely give your way a try, the hospital advised me to try 6mg one day 7mg the next then back to 6mg etc etc so that I was only dropping .5mg at a time this was fine until after a few wks I went to 6mg within 2/3 wks I had to go back to 7mg. I think as someone else pointed out the other day I have just got to be patient, it's been around 17months but I will get there and now I have even more hope hearing from someone who has managed to get to 3mg. Good luck with your journey and thankyou for your help.x
EileenH pauline_56032
Posted
Do you have the link to the dead slow approach if you want to try the way daisy lazy uses?
https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439
However - if 7mg or 6.5mg is what you currently need to manage the inflammation no reduction approach, however slow, will get you lower than that. It doesn't mean you won't ever get lower - just not yet.
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