Hi been on 15mg of Pred since beginning of Feb. Thought I should start to taper and see what happens. Doc said reduce to 12.5. that didnt work out at all, all the pains came back.
Ive now been on 14mg for nearly 2 weeks. Its going OK but I would say 20% of pains are there in the morning up until lunchtime, then they ease off.
Seeing rheumatologist in 3 weeks time.
My questions are - should I have been completely pain free on 15? (I wasn't, it was about 90%).
Im putting up with the morning pain because I really am desperate to get off this medication. Am I doing my body any irreversible damage because obviously my inflammatory markers are still not what they should be.
They were 69 before Pred, then 15 after a few weeks, now are around 20. They should be under 7 Doc said.
Im worried about my racing heart - Ive had a heart trace and all OK, it was regular but nothing to worry about. Im worried about damage to my bones which Doc hasn't even discussed with me yet.
Im guessing most of this will be answered by the hospital, but just wanted to get peoples advice as feeling very down with it all.
Thanks in advance.
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Some people get miraculous results from initial dose of Pred, some don’t. The guidelines say ‘at least 70% improvement’, but ideally 100% is obviously better...you may one who needs a slightly higher starting dose.
Although 15 to 12.5mg is also in the guidelines it’s not achievable for everyone, especially if the starting dose didn't give full relief.
Inflammatory markers obviously show it’s not fully under control.
The racing heart is probably a side effect of the Pred, so please try and stop worrying about it...stress will only make it worse.
Your GP should have prescribed a VitaminD/Calcium supplement for bones.
Have a look through this.....and although you may be desperate to get off the medication, that's not the way to approach it, you need it, so the sooner you accept that, the easier you’ll get through it -
Hello. My heart was faster than normal and it went down with dose. That’s normal. Getting heart flutters a lot isn’t ok but regular but fast rhythm likely the usual effect. Getting the pulse in the ears is normal too. Ask for a DEXA scan to see how you bones are now. There is a lot you can do for bone health and if you search on this forum at the top right you’ll find lots of discussion. The must have basic is vitamin D and calcium and many of us take vitamin K2, plus other options.
As DL says resisting all this does you no favours; this condition is one where toughing it out is not helpful and is likely male life harder in the long run.
You can be as desperate as you like to get off the pred - rush that and all that will happen is that the symptoms that drove you to the doctor to start with will return. The pred has cured nothing, there is no cure, but is managing the inflammation and, hence, the symptoms it causes to allow you a better quality of life in the meantime until the underlying autoimmune conditiond that causes the inflammation burns out and goes into remission. For about 1 in 5 that may be in a year, by 2 years a third of patients are off pred. The majority of us have a longer journey - half of us need more than 6 years. By putting up with too much pain you will find that the symptoms will increase over time, even if you just stay at the same dose.
The morning pain though is normal, the new batch of inflammatory substances is shed in the early morning at about 4-4.30 am and they get to work until the new daily dose of pred takes effect. The ideal time to take plain pred is 2am - the inflammatory effect never gets hold because the pred combats the activity immediately. The sooner you take it after 4am, the less inflammation has been created, the less work the pred must do, the sooner you notice. As long as by later in the day that pain goes down to the level you achieved with the starting dose you can accept some pain if you really want to. But you should never have more or for longer than you did at the start.
Which blood marker are you talking about? ESR or CRP? The numbers are quite different and it does matter. The ideal is to stay at the starting dose until the markers are down to a normal level - that shows the existing, stored up inflammation has been spring-cleaned and then you can set off on the journey to find you aim: the lowest dose that gives the same relief as the starting dose. You are not reducing relentlessly to zero - you are looking for the dose that is right for YOU, not me, not anyone else. Leaving the inflammation to rumble on doesn't do your body any good, it leaves you more likley to develop cardiovascular and circulatory problems later and also increases the risk of certain sorts of cancer amongst other things. And long term, even low level pain, is debilitating and depressing. Unmanaged PMR gets you down - I know, I had it for 5 years because I didn't get a diagnosis. There are other similar conditions that cause pain and fatigue that are much more difficult to control - you may not LIKE pred, but it does the job and most of its downsides can be managed or avoided when you know how.
I have atial fibrillation - actually caused by damage done to the electrical system of the heart by the autoimmune part of it and pred does a fair job of helping to manage that along with the other medications - and after nearly 12 years on pred my bone density is little different from what it was 2 months after starting pred and in the meantime I have only taken calcium and vit D supplements. The adverse effects of pred are not inevitable and while everyone gets some no-one gets them all. But pred will give you your life back - it won't be perfect but it can be acceptable.
I also found higher doses of pred caused erratic heartbeat. I was referred to a cardiologist, had lots of investigations and for me, it was just pred causing ectopic beats. Now on propanolol and issue sorted.
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Fed up...difficulty reducing without getting symptoms back.
Totally Fed Up - Part 2
Just fed up and wonder what life is about 
Fed up and limping around trying to walk my dog on a crutch!
