I love this forum - the wealth of knowledge and support is superb! I have been very 'lucky' in comparison to others suffering from this dreaded PMR but have a quick question. I been using the DSNS method of tapering with success (rejecting the consultant's recommendation of reducing 1 mg a week!) and am now working towards 5mgs (half way through the 6-5 cycle, currently at 3 days new and one old). I have had some dizziness but have had a particularly 'bad' day with dizziness and am now experiencing severe nausea. I don't know whether to persevere or maybe alternate 1 day 5mgs and 1 day 6mgs. Any thoughts? Thanks everyone.
No - don't push it. Those are typical signs that your adrenal glands haven't kept up with your speed of reduction. If you go back to alternate days old/new and you feel OK that's great but if necessary go back to 6mg for a few weeks and then try again. And when you get to 5mg stick there for a few months. One of the best PMR rheumies in the UK likes to keep his patients at 5mg for anything up to 9 months - it is a low dose so nothing to worry about staying there for a while and then the rest of the reduction to zero seems to go better.
I think that, however much we know and are told that there is no straight line curve for reductions, we are always at best disappointed and quite wrongly, at worst, feel we are to blame when it doesn't work like that.
I remember I got stuck on 10 for a while and my GP just said, " Stay there for three months" and then begin again, and that's what I had to do. I did get there in the end. Good luck.
I have been tapering ever so slowly and carefully, like .5 mg a month, got down to 3 and 3.5 and am having many symptoms: stiff in legs and hips, my hands and fingers have become very stiff, and I did notice some gradual stiffness as I was tapering. I had gotten down to 3mg. several months ago and had stiffness. However, my usual syimptoms have always beguin with my arms and shoulder area, not so this time. I started taking 5 in AM and lmg. at night. Still stiff, especially this AM and my fingers and leg really pained me. So I took 10mg. this AM, feel better, and am considering keeping it at ten for a short while. Any suggestions? (My MD had tole me several months tago that I'd probably always be on 5). Thanks, Elinor
I split my doses of prednisolone 7am and 3-4pm at present I'm on 10mg for the second time and my next reduction is due, I'm only doing 0.5 mg this time as I struggled to 10mg .
At the moment I take 9.5 am and 0.5 pm as I have weaned the pm one more recently as the most pain is in the morning.
What should be the next plan stop the afternoon 0.5 mg totally but I'm in pain by the time I get to 9pm or should I split am and pm dose more 2/3 1/3 as I originally did.
I have only ever taken my prednisone in the morning never at night time that's how my doctor prescribed mine . Yes pain is greater in the mornings as our bodies have been inactive . I have been on 10mg for six months now and just reduced to 5mg will now stay on for three months the pain is very minimal so hope I am going to be off this within 6 months that's my goal wish me luck .
Yes I do wish you luck, but I hope you do not cut to 5mg too fast, take it steady, as your adrenals will have gone on strike and need waking up steadily. They will complain if you do it too fast, and you might have to increase your steroids again, which would be a shame after doing so well.
I've been in a lot of pain since reducing from 14mg, but my consultant says reduce reduce so I am and getting stiffer and more pain, but until my ESR increases they don't want to know, to the point my next appointment is August!!!
Hello Eileen..Ive been wondering if I am going too fast. Have had morning stiffness arms/legs for the last few months since coming down from 10mgs. Occ wrists too, some days quite marked. Am now going slow 8/7mgs. My CRP now only 1 (from 75 at diagnosis March 2016) so have thought inflammation must be improving. Am prepared to put up with some discomfort as have had some severe side effects from prednisolone.
Should I go back up till all stiffness gone despite my good CRP ?
Why is stiffness still there when CRP OK ? (I presume I am one of the lucky ones where CRP reflects state of play)
I am more concerned by my Ecg changes and palpitations etc I would love to know if anyone else notices heart rate changes? Even walking up stairs slowly causes rate of 90 bpm.
If your doctor is happy with you at 5mg and you get symptoms of some sort at 3 - why are you trying to force things? The stiffness you experience there is very possibly due to adrenal insufficiency - muscle stiffness isn't common but it shows up in about 10% of patients with primary adrenal insufficiency, i.e. the sort you get because your adrenal glands aren't functioning correctly.
If it were me I'd take the 5mg, enjoy feeling well and being able to dispense with the fiddling about of reducing - and the worry everyone attaches to it!
The CRP can lag a long way behind any infammation starting up and in some patients it doesn't actually rise again as long as they are taking pred. The blood markers alone should not be the primary reason for what you do - although if they are starting to rise you shouldn't reduce any further and monitor their course. If they rise, even with no symptoms then it may be worth trying a slightly higher dose. On the other hand - if you have symptoms but the bloods are stable it is the symptoms that are most important, symptoms always win.
As I said to Elijo, stiffness CAN be due to adrenal insufficiency and that CAN start as soon as 10mg or even above as some people only absorb as little as half of the dose of pred they take. The "physiological dose" is said to be 7.5mg, that is the equivalent dose to what the body makes. But that is only a rough guide. It might be an idea to stay where you are for a couple of months and see if the stiffness improves.
Your heart rate increases in response to effort when your muscles need more oxygen to do what you are asking them. A pulse of 90 in response to climbing stairs is fine in the context of PMR - your muscles are still intolerant of exercise and aren't working properly, they'll demand more supplies!
I have atrial fibrillation - due to the autoimmune part of the PMR which damaged the electrical cells that govern heart rate. I have the opposite problem to you - I'm on betablockers and my heart rate doesn't rise when I walk up hill or upstairs. That's just as bad, if not worse! The doctors thought at first it was due to pred - but it had started about the same time as the PMR and I had it the entire 5 years I wasn't on pred. GP couldn't find anything - but half the time he'd not have found the nose on his face, he couldn't find PMR...
Hi Eileen could you look at my last post to you yesterday it's about 4 back from this one, I think I might have the answer to part of it, last night I didn't have the 0.5 mg woke up in a lot of pain and stiffness took 10 mg an hour later today felt a bit better so is it reasonable to split the 10 into 7.5 morning and 2.5 afternoon or would it be better 9mg AM and 1mg PM then shave the morning dose slowly I need to be at 9mg by 24th May for the Azathiazipine commencing as they think I'm at 9 but I was in too much pain so after the appointment went up to 11.5 mg so this is my second attempt at 10mg.
If you take MORE in the pm you will probably have less pain in the morning, that's really why we often suggest 2/3 and 1/3. But everyone is different and some people do it the other way round, or half and half. You have to find what is best for you. and what least affects your sleep as well if that is a problem - it isn't for everyone. Obviously it isn't lasting 24 hours for you so taking it all last thing at night isn't going to be ideal but almost any other pattern probably will work.
It is worst in the morning not because we have been inactive but because the cytokines, the substances that cause the inflammation are shed in the body at about 4.30am. A study found that the optimum time to take pred to avoid morning stiffness was 2am - the pred is there, ready and waiting for them and they never get to cause the inflammation. Next best is to take them as soon as possible after 4.30am so they have done a minimum of damage. Or some people take some pred in the evening and it is still working next morning. Then they take the main dose at breakfast or whenever.
Just seen you last post - don't think there is much to add is there?
You don't have to tell them you are still at 10mg - their idea is that the aza MAY help you reduce. It might - but then again, it mightn't. Which is more likely unfortunately. You have to be comfortable - it is pointless forcing a reduction and being unable to function - and they need to know that. Aza or no aza.
It will - it is massage attacking the hard muscles in my back due to myofascial pain syndrome! The difference after just 2 sessions is noticeable - and it finishes with 15-20 mins of a fango pack - a hot pack across the back. And although I have to pay some, it's a lot cheaper than going privately