I stated earlier that after my meds were reduced too quickly I had a flare up. I am now back on 20 mg but I am finding it does not hold for 24 hrs. I would love to know how and when others take their meds and if there is a better time. Also I feel a little abandoned in that my doctor gave me my diagnosis, prescribed pills, but gave me absolutely no info on PMR. If I wasnt savvy on computers, I would be totally in the dark. Do others feel lost also. i have bi polar. which causes anxiety so right now I am having trouble dealing with that, possible prediabetes, weight gain, and the onset of PMR. Sometimes I deal with things by denial, but I dont think that is the answer this time.
Thanks for letting me rant for a while, my 72 birthday is coming up and I just want to feel better.
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Nosslrac
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Some people find that the pred does not last twenty four hours while others find it lasts longer. To overcome the problem some people split their dose. The best way is to split the dose and see if things improve.
I am not sure if that many of us are given much or, if that, any information about PMR and steroids. It is wonderful if you can find someone who is helpful. In fact I think I am now probably as knowledgable as my rheumy, if not more so. It took me several months of visits to my doctor until I went privately before I was even diagnosed. Again I am not the only one, some people took years to get a diagnosis.
Strangely I have almost the opposite problem.
Due to lack of 1mg pills to reduce from the higher doses I am taking the lower dose on alternate days.
I find that the day AFTER the lower dose day is the day I feel a few niggley pains again.
Seems that what everyone says is true. We're all very different, whilst being the same.😊
I found that the prednisolone took 10-12 hours to really kick in so after doing some reading decided to try splitting the dose. It has made an amazing difference for me. From being in a fair bit of pain most of the day to none at all. I am lucky in that the steroid does not impact my sleep in any way, which taking it in the evening can have for some.
Also feel like yourself that the information from doc and even rheumy inadequate and if it wasn't for the Internet and forums like this I think I would have thought I was going mad.
I take my steroids now approx every 12 hours. Am currently on 12 mg so 6 mg each time. When reducing have dropped a mg from the morning dose first.
I have been splitting my 15mg dose by taking 10mg after breakfast and then 5mg before bed. This has certainly helped me as the stiffness/pain in the mornings is so much better. Have you read Kate Gilbert's book "Polymyalgia Rheumatica and Giant Cell Arteritis a survival guide"? You can get it in paperback and on kindle and it is a very worthwhile read. Good luck on your journey.
As has already been said - pred varies in its length of action. It can be anything from 12 to 36 hours - and if you are a 12-18 hour person the effect won't last the full day. Although the standard approach is to take the entire dose as early in the morning as possible, quite a few people split their dose so that they take some later in the day, usually early evening if the symptoms are back then or immediately before bed if early morning is a problem. It is more common to find US rheumatologists suggesting it - in the UK they seem to have a fear of adjusting the dose like that. How they split it varies too - some people do equal amounts, others about 2/3 early in the day, the rest later. You have to experiment a bit to find the best way for you - we're all different.
The reason doctors tell you to take it all in the morning (usually about 8am although for PMR earlier is better) is because a study showed that if you took 5mg at night it suppressed the adrenal glands more than taking 15mg in the morning. If you are on short-term pred then that approach will be probably be useful for stopping the pred after a few weeks. When you take pred long-term the adrenals will be suppressed anyway - that's the way the biology works. There is no point waiting until 8am to take your pred if you then have to wait until lunchtime for it to work! Another study showed the best time to take ordinary pred to avoid morning stiffness is 2am so that the peak blood level is achieved by 4am. A special form of prednisone was developed that you take at 10pm and it releases at 2am - saves you waking in the night! I take it and I find it brilliant.
Ten years ago there were a couple of forums in North America, one US, one Canadian, and the one I've given the link to here in the UK. The two in North America disappeared several years ago but the patient.info one led to some ladies meeting and eventually setting up charities here in England (there was already one in Scotland) and there are now 4. Two of them have associated forums. The patient.info site was set up originally by a couple of doctors to provide information for doctors, then later also for patients. It is very strictly moderated - that's why I say that link with all the other links is reliable! Hope this helps you find info.
Don't mean to sound like a school teacher ,have you checked for reactions between pred and any other drugs you take reason I ask is I take 3 prescription drugs + calcium none of which can be taken at same time . Worth checking . Big hug hope things get better
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