Has anyone needed to increase their Prednisone dose?
Posted , 9 users are following.
My Rheumatologist prescribed 15 mg Prednisone taken in the morning, but it isn't enough to help the symptoms. I also think taking an extra 5mg in the evening helps alleviate morning stiffness, which is when I have the worst pain. Please share your experiences. Thanks!
0 likes, 34 replies
adette01750 valdez
Posted
Hi Valdez it's not for anyone to change your dosage on here, it would be dangerous it is a potent prescribed drug. You can always go back to the doctor and ask them to increase it, or you could try splitting the existing dose, 10mg morning and 5mg evening until you get to speak to a doctor.
20 mg is a good starting dose rather than 15mg and most doctors ask for a review after a week to see if the dose they started you on is enough. So I would recommend going back to the doctor and asking for an increase, if you have 70% plus improvement on 15 mg re symptoms it is a good start on the 15mg this is what I was advised.
Take care
maid_mariane valdez
Posted
I started on 15mg and within the week up to 20mg. I still had afternoon pain and again within the week started splitting 15 mg morning 5mg afternoon. We further refined it to taking the afternoon dose at 3pm to get ahead of the pain. Thats if i remember at 3pm lol.
It took months for morning pain to turn into morning stiffness so now just stiff in the morning so very slow start.
I hope this helps
Mariane Canada
crash1949 valdez
Posted
I started on 15mg but had to increase it intially to 20mg. After 2 months I came down to 15mg and then a month after to 10mg. My plan is to drop 1mg each month as long as PMR symtoms don't reappear
maid_mariane crash1949
Posted
Hi Crash
I would be cautious about your reduction. To me it seems way to fast and you may crash. Look at dead slow method and Bristol.
You usually don't reduce more than 10% but guys do better.
Mariane
EileenH valdez
Posted
It would be helpful to have more details - how long have you been on pred, have you had any relief of pain at all, and when are you to see your rheumy again?
Typically doctors look for a 70% overall improvement in symptoms fairly quickly in PMR - it is fairly unusual to get total relief of pain and symptoms. In some cases patients need more - if they are larger or some people don't absorb all the pred so effectively get a lower dose which isn't enough to get a good result. The most recent recommendations for the management of PMR, published in October 2015, suggest using up to 25mg - they used to use more in the past and then their fear of pred side efects led them to reduce the starting dose to 15-20mg as that worked for a majority of patients. Now they are thinking that a higher starting dose gets a better long term result after all. So maybe your rheumy needs to try a bit higher dose to see if that works.
You will find a link to these 2015 Recommendations in this post:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
However - PMR is just the name given to the set of symptoms we all recognise - it isn't the disease, that is an underlying "something". In the case of the PMR we discuss here it is an autoimmune disorder that causes the immune system to attack the body by mistake, causing damage that leads to inflammation and pain and stiffness as a result and which pred works well to relieve There are other causes however - and if there isn't a good result in response to pred the rheumy may need to re-think the diagnosis. For example, late onset RA can appear identical to PMR but doesn't always respond so well to the moderate doses of pred. And there are other things.
And another factor is that the antiinflammatory effect of pred lasts from 12-36 hours, depending on the patient. If you are at the 12-hour end of the spectrum you may have returning pain before the end of the 24 hours - and almost everyone gets pain in the mornings before the next dose of pred takes effect. New inflammatory substances (cytokines) are shed in the body every morning, about 4.30am. The longer after this time you take your pred, the more inflammation has developed. Studies have shown that the optimum time to take your ordinary uncoated pred is at 2am - it takes up to 2 hours to reach the peak level in the blood and then it's ready and waiting to prevent the cytokines doing their damage. Some people do actually set an alarm and do this! However, taking it very early, about 2 hours before you want to get up, also works pretty well - take it and settle down for another couple of hours rest by which time it is working. And some people take about 2/3 of their dose in the morning and the rest later in the day, sometimes as late as evening, and find that also helps with returning pain in the evening and the morning pain problem.
So there are a lot of factors - but as Adette says, not for anyone on a forum to change doses. We can suggest you might need more - but that is up to at the very least your GP to approve. Apart from anything else, you will need more to be prescribed or you will run out which you must not do - you must not stop taking pred sudddenly.
valdez
Posted
first diagnosed PMR 9 yrs ago at age 57, treated 1 yr w/pred. resolved.
It reappeared this summer, and my doc has had me on pred 10-15 mg, since.
Relief by afternoon, but horrible mornings. I so appreciate finding its best to take pred at 2 Am to catch those early morning demons from releasing. I've subscribed to the group and order all of the literature thru Amazon. Thanks!
EileenH valdez
Posted
Within a few months I was switched to Medrol - which intially worked the same but within about 3 or 4 months I had had to increase the dose to get the same effect, I assumed it was a flare. Then it started taking longer and longer to kick in - until I was taking 20mg at night to get any relief before about lunchtime. After about 9 months on Medrol I was switched again to a form of prednisone - and got an immediate response to 15mg which I tapered within about a year to well under 10mg.
Second episodes of PMR are rarely the same as the first - it can go either way and last for different lengths of time. Just because something worked last time has nothing to do with how you will be this time!
valdez EileenH
Posted
Thank you dear! I'm now 66, 9 years older than the first time. I think it's the same steroid. Rheum is concerned that it's not classic PMR neck, shoulders, but instead wrists, arms, back of legs.
Anhaga valdez
Posted
Hmm, I think Eileen's comments about the possibility of something else going on should be taken seriously. You have atypical symptoms, you have a rather poor response to the initial dose, and although PMR part two can be different it seems there's at least one too many different things here. Did you and your doctor just assume it was PMR again, or have you been properly investigated for other types of arthritic disease?
EileenH valdez
Posted
Anhaga's right I think - but PMR does go for wrists and arms too. Mine really got my wrists from the early days and that is where I flare now. If my wrists ache - not enough pred! I'm not the only one.
He might be surprised just how many of us are "atypical"! But if it were me - I'd like to be on a bit more pred for a start. Then work from there.
Elijo EileenH
Posted
My sister's wrists and hands are very painful and swell at times, She ca nhardly use her fingers to write, this has been going on for over 3 months (this is in relation to the earlier comments I made to Valdez) This all sounds very atipical unless something else is going on whichI strongly suspect. The MDs have to be detectives.
EileenH Elijo
Posted
Has she got "sausage fingers"? That is typical of something - psoriatric arthritis I think. Might be something else too.
Mind you, writing was hell. thank goodness for computers!
Elijo EileenH
Posted
Yes, frequently, her fingers swell. She can barely open the door, write, etc. The rheumy thought it could be pseudogout and prescribed coliccine (sp) but I don't really think it has helped much at all. Now she is feeling worse all over. When I first recently took her to my GP who treats my PMR etc. he prescribed 20mg. pred for a week then reduce to 10mg for a week, as a trial for something (?) He didn't seem to think she has PMR. He did refer her to the rheumy. It does seem to be a mystery. She is the only family I have in my original nuclear family, and I do care very much about her. The rheumy is an older man, wears hearing aides, was trained in Ireland, and more in US. I try to interject pertinent info at appropriate times and he says he wants to hear from the patient. That is one of the reasons why I accompany her because she freezes up at doctor's offices and doesn't tell it like it is, so she has asked me to interject. appropriate info. She'll see him in about 2 weeks again and go on from there. Her CPR was raised, ESR in the normal range. She doesn't have a computer. Me oh my!!!
Anhaga EileenH
Posted
I've found I've lost some of my fine motor control. No particular symptoms in hands - just some knobbly joints from longstanding osteoarthritis, which has been quiescent for a very long time. Wonder if it's from the pred, part of the general weakening of my entire body? It distresses me because I like to draw and it's discouraging when the pencil does not obey! I suppose on a smaller scale it's like your having to give up skiing?
EileenH Elijo
Posted
Did her symptoms respond well to that trial of pred? Many doctors use it as an ingredient in the differential diagnosis. PMR is (generally but not always) characteristic by responding very dramatically to a moderate dose of pred - as described in the Bristol paper, link here, about halfway down or so.
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
They show a big improvement in symptoms which return in a similar time frame when pred is stopped. Other causes of PMR do not show as big a change but may improve a bit to this sort of dose.
Get your sister to sign a note saying you are her advocate and at her behest. Then it's up to him.