My Gp suspects PMR and I'm awaiting blood results at present but he started me on a 4 day course of prendidalone to see if it resolves it.
How long was it before you felt any relief from starting prednisalone at 15mg per day?
Just trying to prepare folks.
Thanks in advance.
1 day
Felt a little better in a few hours, and third morning couldn't believe how well I felt!
My GP started me on 50 mg prednisone until I had a test for temporal arteritis (Giant Cell arteritis....taking pieces of arteries in temples out to examine ) They were not inflammed so they dropped the prednisone to 40 mg for two months, then 30mg then after a month to 20mg (having blood tests every month recording CRP for inflammation) Then after another month to 15, then another to 10mg......my CRP was normal......but then I got stupid and reduced too quickly to 5 and then to zero within a month...too fast....PMR returned....CRP test came up 18.5 last week so saw a Rheumy and she told me to go back to 10mg for two weeks to see where the CRP will be...I am in pain...hips hurt, neck hurts, shoulders ache...tough to walk...I KNOW that CRP is STILL too high and I need a higher dose of prednisone...and will get another CRP test Monday...she will raise the doseage, I assume to 20 mg. to see if the pain goes away....Impatient!!! I re-start AGAIN trying to get inflammation under control , CRP level to normal, and THEN I will begin to reduce SLOWLY>>>>>no matter the side affects.....
You should feel relief after a few days on the prednisone....
Thank you. Karen
Thank you Anhaga I'm currently on day 2 so hopefully tomorrow may be a preferable day.
Hsnkyou Jean. It certainly sounds like a rollercoaster ride then. I hope you can find a good level very soon . my Gp wasn't sure and with the weekend he wanted to try something whilst bloods being analysed. I do feel slightly less pain as I was day in floods of years thinking I want do this anymore a couple of days ago but I wasnt sure what sort of difference to expect plus being a diabetic with numerous other issues I believe that's why a low dose steroid stsrt least until bloods back.
Hi Clare, I am so sorry you are in so much pain. A normal starting dose for PMR is 15mg so it seems you are on the right track. Some start at 20mg, particularly if you are a bit chunkier! I hope you get the magical relief I did. In my case it was fifteen hours twenty five minutes.
Thank you Ptolemy . I'm so pleased you found relief fairly promptly thats great . Thank you for your confirmation on the normal route for this condition.
Hi, Clare: My impression is that most people react within a day to a dose of 15 mg, which is almost diagnostic of PMR. Certainly more so than bolld tests! However, 15 mg did little for me. I was better at 20 mg, but needed 25 mg to get substantial relief. (I am small and not that "chunky." My doctor began to question the diagnosis though I was 100% in line with all the symptoms. Within 3 or 4 months, I was down to 15 mg and doing fine.
Some diabetics have a serious potential problem in taking long-term steroids.
One of the watchwords on this forum is "everyone is different!" PMR is extremely variable and how individuals experience it and react to medication varies considerably. All the best!
Hi Claire 87416, I started on 20 mg and started to feel better in 2-3 days and myself in about 2 weeks. That was last August. Hope that gives you an idea.
Good Luck!
Many thanks snappetblue for your reply . I have looked up bits before finding this forum and diverse is certainly true. Thank you once again hun.
Many thanks michdonn . so glad you have found your level which helps you feel better.
Hi Clare
Although 15mg is a normal - lower staring dose for PMR you may need a bit more - there is some evidence body weight makes a reasonable difference from what I have read here and elsewhere. My symptoms evaoprated in 4 hours - almost like a 'miracle' at the time. But I was started at a much higher dose as my GP wasn't quite sure and I had 3 days at 50mg and down rapidly to 25mg. Anyway when I got to around 16-18mg symptoms of GCA emerged and I am back at high levels again. As far as bloods are concerned some find they almost bear no relativity (at least subjectively) to their symptoms while others refer to them assiduously as clear parallel markers to their pian/stiffness. Some fab people/experts on this forum - you'll get lots of help and support here if you need it.
All the best with everything
Rimmy
Thank you for your response rimmy. I'm a chunky monkey lol so that could be the issue as you mention . It seems hard to manage from what I've read can I ask once diagnosed are you the best treatment decider or your doc? I know many expert patients who docs will happily go by rather than by their own knowledge.
I was doing great, then a relapse, had to work up to 30 mg to get relief. Now have to work myself back down. My lowest level was 7 mg. I will come down even slower this time.
Aww so sorry to hear you needed to adjust again from what bit I've seen it does seem pretty common situation Sadly . hoping for better times for you lovey.
Thank you, I have not been on the forum very long, but it does appear that relapse are quite common. Good luck!
Hi again
this is an interesting question and as you'll also read here there are lots of different ways people and their medicos 'manage' PMR. I am an unusual example in some ways as I live in a rural area of OZ and had to do lots of research myself due to the fact real 'experts' in this condition aren't prolific around here. So it all depends really - many people have a specialist Rheumatologist and others seem to prefer a helpful and well-informed GP. Many ARE well versed and very 'expert' but there are quite a few disturbing accounts of others who seem to know very little and confuse their patients and treatments quite a lot. Not pointing any fingers though as PMR is a relatively 'rare' condition despite the fact it feels 'common' when we are all chatting on these and similar forums - and to be fair many GPs only see one or two people each year with PMR and or possibly GCA. So anyway I have a 'good' GP who is very helpful and has engaged with all the research I have also done and read the clinical guideline(s) papers I have shown him - without any unnecessary 'defensiveness' - thank heavens !! But I am having an ophthalmologist involved as I also have GCA symptoms as well.
The whole issue of establishing an initial appropriate dose and 'tapering' it down appropriately in line with your experience/symptoms is a big one too as you'll also read here with many medicos seeming to want to get you off the drug asap due to potential side effects - of which there are many. But while some seem to get a few and others almost none - that depends as well on your experience. You'll find lots of info on past discussions here about all that and this can be helpful to show a doctor if you think it necessary.
As I am only 5 months into my foray with all this I will leave you to those here with far superior knowledge than me and I am sure you will find them really helpful. One last thing is that although I have found this a challenging experience I have also learned a great deal from it - especially how kind and generous people here and elsewhere can be sharing their personal experiences. I cannot imagine how different all this might have been once in the pre-Internet days and how difficult to find clear and useful information without hours in libraries and being able to talk with someone who knows what it all 'feels' like !!
Best
Rimmy
Timmy, you are sooo right, it took me about a year to find this forum. The wealth of information I have learned is unbelievable. Thank God I stumble upon this forum, knowledge is very powerful.
Good luck we are all in this together.