GP gave my blood results on Tuesday PMR - apparently CPR showed 8mg/L where normally would be between 1-5. I could have burst into tears with relief was just so pleased to actually know what the heck was going on with all this pain and discomfort so I am now on 20mg Pred.- GP checking me next Tuesday to see how things are going re. side effects etc. Had good chat with Doc - he assures it will be a very gradual process of reducing down - also taking Ranitidine to prevent any gastric type discomfort. First dose was 9 am yesterday morning, and, no lie, by 7pm my arms actually much less painful when raised or lowered and my shoulder pain was also greatly improved - and the "lift" in my mood was brilliant - just the relief, I think, that something was being done to help this debilitating condition. I look forward to checking this site daily - everyone on it seem very pleasant and sensible in their views and advice. Prior to yesterday, have always enjoyed 4 small glasses white wine between 4-6.30pm. Yesterday I cut down to 2 small glasses, but must admit would have liked to have one more - I know this is a grey area with differing thoughts, but have re-read the "blurb" that comes with the preds 3 times and nowhere on it does it mention alcohol surprisingly. Anyway will welcome any posts from anyone - just wanted to share my thoughts about my result.
Cheers everyone.
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winter10
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Glad you've got a diagnosis, not so glad it's PMR, but at least you know what your problem is and the Pred is making life liveable again. Long may it continue.
Nice to hear a sensible GP regarding reductions. But, and there's always a but isn't there, you must reduce in line with your symptoms, or rather lack of them. The idea is to reduce carefully until you find the minimum dose that controls your pain (inflammation). If you do that too quickly you can go below that optimum dose, and then you get into problems again.
Simple thing to remember is do not reduce more than 10% of your current dose that's 2mg, (although many manage 2.5mg) when you start at 20mg, and don't reduce if you have pains or know you are going to be in a stressful situation at the same time. Most people stay at one dose for about a month, that gives plenty of time to know if you are okay.
As for alcohol, I stayed off it when I initially started (did start at v.high dose) but must admit over the years can't say I've noticed any difference particularly on my GCA or medication whether I've had a drink or not! You might find that white wine is a little more acid than red and that may not sit so well with the Pred. A good champers is nice though.
But a little of what you fancy does you good they say. 🍷
Hello again - Thanks for you helpful reply, am making notes of suggestions - like do not drop more than 2mg after a month of initial 20mg and have taken on board the fact that I have to "feel" capable of dropping when that time comes - stress is a big factor in my life - so I shall not be pushed into reducing preds unless I feel up to it. Love reading all the stuff on this site - thankyou again for your note. Xmas has left my funds looking a bit "sick" so will stick to Chardonnay for now - you can meanwhile carry on enjoying tour champagne - cheers to you!
Always had expensive tastes, trouble is don't earn the dosh to go with it! Never mind- can always dream.
Hello Winter08
Welcome & glad your GP has diagnosed you & started on Prednisolone, don't go rushing around because you feel better, take it steady but when you've been in so much pain it's like a Miracle! I kicked some 'ass' in work once my steroids started working! 🤣
You'll find plenty of advice as per DorsetLady & others will reply later. PMRpro will give you much help & guidance as she has to us all.
Hello there - Thankyou for your lovely email - made me laugh about kicking ass when you started on preds - my other half knows I am feeling better cos I have started kicking his again Cheers
Be careful about relying on blood test results - they are often not in line with how you are feeling, so also watch any symptoms you may have before or after the blood is taken and rate the symptoms higher. (Some patients never have raised inflammation markers at all and are diagnosed on symptoms alone). The earlier in the day that you take the steroids the better, so it may be time for an early breakfast.
In my view alcohol is fine in moderation as is everything else!
Your post absolutely fits most people's (including my own) experience of a very speedy initial reaction to the preds once diagnosed with PMR. Yes, it feels like a miracle after such crippling, confusing pain and stiffness!
Your GP sounds on the case (unlike some..) in terms of gentle reductions of the meds. Just try to be a 'patient' patient though - after the initial 'high' on a high dose of steroids, the road isn't always quite so easy with PMR and Pred tapering (it can be a bit like snakes and ladders energy / mood-wise) but you're in good company here with loads of experience and wisdom shared by others - and some fun along the way. If nothing else, the journey of PMR helps many of us to learn about ourselves in terms of 'pacing' mentally and physically - and many here report that this chronic condition has actually helped them to re-evaluate their lives and decide what really matters most (myself included)!
Try to look-up the DSNS (Dead Slow, Nearly Stop) tapering method under one of the sub-headers here. Although it comes with no guarantees, it's a well respected approach which is proven to reduce the possibility of 'flares' (increased pain etc) and / or the extreme fatigue that unfortunately often comes both with PMR itself and even the gentlest of tapering gradients with steroids. Touch wood you'll escape any of this, or any flares will be manageable at least.
The general wisdom with pred tapering is that it's a good idea to plot-out a very gentle reduction regimen (max 10% per month drop compared to the previous month's average dosage - even lower monthly % reductions below 10mgpd) over, say, 3 months at a time: and to record your overall 'state' week by week. You could either score yourself 1-5 (bad - good) or, as I do, just scribble notes alongside the plan (e.g feeling c**p with flu / sudden energy boost despite washing family cars, etc). This way, you can track how you feel against any reductions and / or other factors which can affect PMR symptoms such as Stress, over-activity physically (easily done when you initially feel so good on Preds), or even the weather (yes, the weather!) - and make some sense of how the plan is going at any stage over the long term. It works for me....
BUT, try to remember that your tapering should ultimately be more symptoms-led rather than 'a relentless race to zero' (to quote PMRpro and DorsetLady* - 2 very expert and trusted contributors here) and, like all the best plans, it should be flexible. Again, you'll find loads of well-informed info on the topic here.
As for taking alcohol with Pred - as far as I'm aware there are no significant / dangerous 'clashes' between the two. That said, it does depend on an individual's overall health context. I enjoy a not-so-small glass or two of the red stuff in the evenings with dinner and, if nothing else, it helps me either to sleep or stay up and write the occasional witty post here (although that might be a matter of opinion..)
Best thoughts and keep smiling on the journey
Mark B.
* p.s. PMRpro and DorsetLady - cheques payable to 'John Wayne' please ;-D
Thanks a lot for your informative email - I am sure you are v. good at writing "witty" posts - you have a nice flow in your writing - shall look out for more - have had several replies to my post today - strangely enough - for once- nobody is shouting down the alcohol - which makes a nice change in this "Nanny" state!!!!!!! Shall look out for some more of your witty comments - and thanks again for your very helpful mail.
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