What to do ?
Posted , 10 users are following.
I have had PMR for 2 years and am currently on 12.5 mg of methylprednisolone.
I use the DSNS method reducing .5mg at a time and often do OK for the duration of the entire reduction cycle.
The problem is I will reach the new reduced dosage and often do OK for a week or two only to have my symptoms return albeit at a less intense level.
Perhaps I am a bit too optimistic but I am expecting to feel like I did at the previous dosage if I made it through the entire cycle without incident.
My question is what to do at this point ?
0 likes, 9 replies
BettyE rocketman42
Posted
There ought to be a ninth Beatitude.... Blessed is he that expecteth nothing for he shall not be disappointed.
Sorry I don't mean to be glib but as someone who had PMR for eight years I know that there are absolutely no givens. Be optimistic but watchful and when your symptoms tell you that the dose you have reduced to is not sufficient then up it for a couple of weeks and try again. The reduction method you are using has proved successful for many but there is no predictive curve available unfortunately.
I hope your doctor is not one that tells his/her patients that PMR lasts 18 months because that is just not true for very many people. My two episodes took 3 and five years respectively and I believe Eileen quoted more than five years as the mean so where we are on the line can vary greatly but
we are where we are so don't get too down on yourself when you are not where you expected to be and don't let the pain build up before you increase the pred.
That all reads a bit teachery but it's meant kindly.
ptolemy rocketman42
Posted
Hi Scott, on reducing pred if you have pain the day after or so it is pred withdrawal, if you have dropped too far, this does not happen for around two weeks or so. If it only lasts for a short time you may be OK. As long as you do not reduce when you have pain but only when you feel comfortable.
val26097 rocketman42
Posted
Can someone else send me a link to this DNSs method of reduction please. Like to have a look at it.I have reduced from 60mg end of June to 17.5 currently. I am reducing 2.5 every 2 weeks it'll egt the 10mg then reduce 1mg every 4 weeks. Does this sound right? I have GCA. I have no problems so far. Just a slight headache that they think is eye strain due to cataracts.
EileenH val26097
Posted
https://patient.info/forums/discuss/browse/polymyalgia-rheumatica-and-gca-1708
It is the first post on this page. It also appears in the replies section of the Resources post which is the third post.
EileenH val26097
Posted
Ooops - didn't read it all! That is a very fast reduction now you are below 20mg and I would slow it down. The high dose pred didn't cure anything and now you are tapering to find the right dose for you and your GCA inflammation until the autoimmune part goes into remission - and that is likely to be something in the region of 2 years, it may be more.
http://www.rcpe.ac.uk/sites/default/files/quick.pdf
has a reduction plan for GCA which is considerably slower for you to look at. However - if what you are doing has worked so far, that is fine and you have saved a lot of pred. But now no reduction should be more than 10% of the current dose and you often need more than 2 weeks at a new dose to be sure you are still on enough and to avoid a flare. But everyone is different.
val26097 EileenH
Posted
ThanksEileen.
Michdonn val26097
Posted
Val, you are much quicker than I, I am using the DSNS method on 38 day schedule and only 1/2 mg under 10 mg. I never reduce if i have any PMR pain, just stay on higher dosage. If a flare bump up dosage. You don't want to end up with a bad flare you take more Pred to get it under control. Thinking positive with a smile.🙂
val26097 Michdonn
Posted
Im a bit concerned with not doing as consultant says. I have GCA since end of June. I will check his letter tomorrow just to make sure what I said is correct.
I will try and smile........😊
ptolemy val26097
Posted
If you get to the point in your reducing where you start to have symptoms again, stop immediately and go back to where you last felt comfortable. If you are able to tell your consultant you have problems that is ideal.