Managing Low Dosages of Prednisone? | Arthritis Information
Please offer any tips and ideas for managing lowering prednisone dosages below 3 mg. I am finding that my body needs longer to adjust now that I am at 2 and one half mg. Has anyone tried lowering with less than 1/2 mg? I am using the slow taper method involving alternating old dose and new dose for a week or two and then old dose for one day new for two for a couple of days. Is there anyone out there who struggled with getting below 2 and one half and is willing to share? Are there any timing suggestions or foods or specific exercises that have helped you at this stage? Hi luckycauk,
I've not got that far down but I know there are people who post on the UK Patient Experience forum who have found the final getting off stages very difficult.
Lowering by less than 1/2mg is fraught with problems as it just isn't feasible to cut the tablets evenly so the 1mg tab may give you bits that are more or less than 1/4mg and the doses will be uneven.
Have you tried one day of the new dose the first week or two, then 2 days new dose for a few weeks, 3 days the next few weeks? I've mentioned a couple of times in various places that a reduction should never be more than 10% of the current dose so you can see that getting from 2.5 to 2 - a 20% reduction - is going to be difficult unless you can fool your body by it being a very small reduction in the total dose per week over a period of possibly up to 7 weeks. Some UK people have succeeded by doing it as slowly as that.
The other thing is that about a quarter of all PMR patients have been found in studies to need to remain on a very low dose of between 1 and 3 mg for a very long time - taking 5 to 7 years to get off steroids altogether. A very small number remain on these tiny doses of steroids for even longer. If you really are struggling - don't worry about it, go with the flow and listen to your body. The worry will only cause you to get stressed and that means your body will need MORE steroids to get the same relief - which is not the point!!
good luck,
MrsE
Hi Luckycanuk,
Have you read 'Ragnar story' (from Sweden)? He shares how he got down to zero. As you know it's hard to get below 5 mg. Here's a direct link:
Ragnar's Story (sweden)
http://www.pmr-gca-northeast.org.uk/stories.php?id=12
RickF2010-10-17 09:39:30I had PMR for 2.5 years. I was ok for 3 years .It came back 2 years ago. I am now on 1 mg and CANNOT get off it! Everytime I try to takle 1/2 I am horribly stiff.
Good luck Luckycaulk!
Yes RickF I have been using Ragnar's Story as my guide. Super helpful. I was wondering though if anyone else had experience as well managing those lower doses. Both my dentist and opthamologist have told me that their patients with PMR seem to stay on very low maintainence doses of prednisone "forever". I am determined though to try and find a way off. I seem to be doing quite well to date and my GP who is my case manager is very pleased with my progress. I am exercising and have always watched my diet. Nothing exceptional just sensible because I do have a sweet tooth. I am avoiding alcohol with a few exceptions as I do miss my glass of wine. Thank you though RickFBumping this upHi luckycauk,
If you follow this link it will take you to the site I mentioned in my other post - if you post your question on there you will surely get some responses as I know there are several regular contributors who are down at that low dose and who have various coping strategies for PMR.
I'm quite proud of myself for managing to do this!! Little things! I suppose it's because that site won't let us post links and confiscate them so I just don't do it! Rick appears over there too at times! And Mrs UK - she's on a pretty low dose now too after years of trying.
hope this helps,
MrsE
Thank you once again. What an exellent resource. Dear MrsE,
I have tried your link several times and can't get to that site. Is there another way to get there? I am now at 3 mgs and wanting to go "all the way". I would love to get all the hints and helps I can, as it seems it is a hard thing to do. THank you for all your support!
Nancy,
The link MrsE shared is correct. It just happens to be down today. Was down yesterday as well. Don't know if it's their server or what. Hopefully it will start working soon.
Thanks folks - glad to know it isn't just me that can't get on - was about to post to ask if anyone else had had problems! Great minds think alike!
Nancy - it is possible to get down below 3mg and even off the steroids altogether but about 25% of all PMR patients need to remain on a very low dose (i.e. below 3mg) for a very long time, sometimes for life. No one knows why but there is some suspicion that some people have a degree of adrenal dysfunction which needs a "replacement" dose - much like diabetics need insulin because their body doesn't make enough of its own. About 25% of all PMR patients are able to get their dose down with no problems and off altogether within a year - but they tend to have more relapses later. The rest are somewhere inbetween and some experts think these 3 groups represent different patterns or even forms of PMR - accounting for the differences in the way we respond.
By the way - earlier in this thread Rick gave a link to Ragnar's story (a way of reducing at low doses) on the British pmr-gca support site which also gives loads of other info about PMR which you might find useful if you haven't already seen it - most of the contributors also appear on the patient experience forum too! I tried to copy it to here but failed (nothing new there!). Try having a look.
best wishes
MrsE
Thank you Rick, I'll check back....Nancy
The site is up and running again and here is another link for you
www.pmr-gca-northeast.org.uk, read, in particular under the Useful Medical Information link
Steroids and what they do
A narrative written by a patient for patients.
It is also useful to read people stories etc.
Good Luck
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