What is the best starting dose - Newly Diagnosed

Hello artfingers, look up the Bristol pmr plan, it outlines the gold standard treatment for pmr. Many of us once we get to 10mgs then adopt the dead slow and almost stop reduction plan and even then many of us only reduce each step by .5mg.

we all worry about the side effects of prednisolone. But attempt to reduce your carbs, that helps abit with weight gain. Many of us have put on weight but as the doses reduce so does the side effects.

i don't like the fact that I put on weight, etc, etc, but as far as I'm concerned I now have my life back, yes, not the complete life I use to have, that will come later when the auto immune condition hopefully goes into remission, but for now I have very little pain and can do most things, things I most certainly couldn't do pre diagnosis when my life temporary stood still due to the pain and stiffness.

all the best, tina

Hello Artfingers, the usual/standard starting dose for PMR is 15 - 20mg of Prednisolone.  The thinking is that the inflammation needs to be hit with a dose which should give you approximately 70% pain relief in a relatively short space of time, and then to stay at that dose until you feel you have stabilized.

The method then is to reduce your dose slowly enough to ensure that the inflammation is held - too fast or too big a reduction can cause the inflammation to break through again which often causes problems as you may need to go up beyond your starting dose in order to hit the inflammation again.

Side effects - yes, steroids have many, so does paracetamol or ibubrofen.  As with those, no one person gets them all, a lucky few get none.  The side effects will disappear as the dose reduces.  The weight gain can be minimised by effective diet - low carb is usually suggested.

Vigorous exercise is not usually suggested, putting muscles which are already painful and inflamed under even more stress does not help at all.  It would seem that all of us were very busy and active people and the weakness is part of a very frustrating condition.

Hope this helps.

 

The recommended starting dose for PMR is 15-20mg/day. That's what is described as a moderate dose so has fewer side effects - and is also not so high that it will work for other sorts of arthritis and mask the typical very speedy and considerable response that is typical of PMR. A study in italy some years ago found that you got a good response within a month for 75% of patients if you started with 12.5mg - but that is longer than you often find with 15mg.

I appreciate what you are saying - but maybe a week at 10mg and then reduce 1/2mg a week to find the lowest dose that manages it might work? If 10mg is enough for you there is no reason to go higher but 5mg is obviously not quite enough. It also helps to get all the stored up inflammation properly cleared out - but if it isn't long since you stopped the pred for poison ivy it maybe isn't too bad. The earlier in the morning you can take the pred the less you should be able to manage with - the cytokines that cause the inflammation are shed in the body at about 4.30am. The ideal time to take the pred to avoid morning pain/stiffness is 2am so it peaks in the blood at 4am but a lot of people find when they wake to go to the bathroom is early enough and then they settle down for another hour or two by which time it is working.

I'm sure you'll have seen this 

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

and if you go to the PMRGCA NE link they have a book - though whether you will learn much more than you've already learned from my posts I don't know since I wrote much of it!   I'm assuming you are in the US (prednisone and poison ivy?) but they do ship it abroad.

What carbs do you include in the Paleo diet? I don't know enough about using it to be sure - but avoiding starchy vegetables might help the hunger pangs. You say you are hypoglycaemic - how do you sort that using Paleo? Pred changes the way our bodies metabolise carbs and you may be finding that you are still triggering too much insulin now you are on pred so your BS is plunging and you are hungry as a result. I don't eat Paleo proper but predominantly non-starchy veg and meat/eggs/fish - it is only when I include more starchy food that I feel hungry afterwards. It is a massive problem to adjust your diet when you have been very active as you were so could eat lots more. That happened to me when PMR started - it wasn't due to pred I put on weight but lack of exercise because I couldn't! I put a lot of weight on with one form of pred but have now lost almost all of it - a bit to go to get to pre-PMR weight but the pred weight has gone.

But honestly - being cuddly and pain-free is far preferable to being in constant pain. You are still the same person underneath and they won't disappear whatever pred may do to it in the meantime!.

Thank you for all the pointers!  Yes, I have read the Bristol pmr plan (downloaded it).  I am in the U.S. (Michigan) so I love all the British-isms on your posts.  My hubby is an Angliphile (wanna-be-wishes-he-could-live-there). He even built a pub in our basement but that is another story.  I'll stick with the ten for now until I see my rheumatologist in 2 weeks. Interestingly, I had a knee arthroscopy for torn meniscus, which is why that doc had me go off all meds, all vitamins, everything for a week before the surgery and that week was torture.  Could not even find a position in bed that didn't ache or hurt after a few minutes but I'm better again now.  I do try to watch the carbs and have learned what works for me as far as the blood sugar issues.  Interesting I didn't realize how the prednizone affects blood sugar but I am learning.  This is such a learning curve and I must say I'm finding out more from this forum than all kinds of previous research.  Eileen, I shall order your pamphlet for a concise guide on this.  I am able to ride the stationary bike (low setting) for a half hour one week post op which is amazing but I rode alot before hand and am diligent about stretching.  I'm trying to listen to my body and fine tune the exercise.  I see a massage therapist each week who is sensitive to what works for me.  I just need to get my hubby to quit baking sweets and leaving them all around to tempt me!  (So far I'm not eating it).

i didnt put any wheight on   nither did i have any of the side effects  whilst on pred

so guess i was very lucky and i have  been on pred  for  3 years  now  down to  4.5

Yes, maybe we two Michiganders could meet!  I'm still reading all these forum posts.  Interesting how I'm reading how it is okay for some to adjust their pred dosage via a GP or even on their own.  Wow.  I wonder if I might be wrong, but it must be harder over there to get in to see a specialist (i.e. Rheumatologist) so everyone runs things by their GP (general practioner?).  My family doctor just refers me out to specialists (orthopedic for knees/bones).  She doesn't know enough about she said - so anyway, I see my rheumatologist next week so I'm going to mention this group and others to her - so great to have additional support and input.  Anyway, I have a new book I'm reading on inflammation and the connection to diet and what inflammatory foods are, how various autoimmune diseases work, some research he's done.  I'm not sure if I can mention the name of it on the forum but anyhow, part of my educating myself is also looking at the diet connection and just seeing how changing and fine tuning mine helps or doesn't.  Next step for me is going to be getting a Bowen treatment. I'll try anything, but most of what I have tried hasn't worked (except the pred).  It's like we have to be detectives with our own bodies.