Is shakiness a side effect of prednisone?

That's the first time I've heard of someone else having the creepy crawly sensation.  It was either my second or third night after starting pred that I felt "things" were crawling all over my body, under the skin.  At the time I thought, well if this is the worst side effect I can manage it.  But in fact it never happened again.  Now I speculate it was the anti-inflammatory effect of pred actually doing its good work on all my affected blood vessels.

Have you tried bioidentical hormone replacement therapy? If not you really should consider it as an alternative to just estrogen replacement. It is amazing. It will make you feel young again. I tried it for about 2 years and would still be on it today if I had gotten a blood clot and had to get off of it. If you want more information just email me and I'll tell you more about it.

If 15mg is only just controlling the symptoms - which is what it sounds like - then you probably need a bit longer at 15 or possibly even a slightly higher dose. You don't say how long you have been on 15mg - you need at least 4, preferably 6, weeks to get all the existing inflammation cleared out before reducing to find the lowest dose that works as well as that starting dose did. It has to deal with a daily batch of new inflammation created each morning - so if there is any left-over inflammation a return of symptoms may come at a higher dose.

Part of dealing with PMR is lifestyle - that is important and maybe your 2 good days resulted from a few days of rest before them! But I'd feel you need more than 2 really good days before reducing. One swallow doesn't make a summer...

Both I and my G.P. believe it is PMR, my mum ( deceased) had this with GCA and my uncle has it. I am 69 years old and the pain and stiffness started in my shoulders and hips (condensed version). Blood tests weren’t done until I had 2 steroid injections in my shoulder for severe bursitis, just 13 days apart. Both my ESR and CRP were elevated but not by much.

What I find really difficult is that I have some days when stiffness seems to be the only symptom and other days when I am moving like a 90year old with shoulder, hip and knee pain. I am not good at pacing myself and on good days maybe overdo things.  I was a regular golfer and yesterday on a good day managed to play 6 holes, I used to play 18.

I want to be normal and not on medication hence my wanting to reduce steroids.

"I want to be normal and not on medication hence my wanting to reduce steroids"

If what you have is PMR (and it certainly sounds like it) you will probably have to get your head around the idea that if you want to be normal - you will need pred. The underlying cause of the symptoms we call PMR lasts on average just under 6 years and the purpose of the pred is to manage the symptoms to allow a decent quality of life until the autoimmune part burns out and goes into remission. Until then - you will get returning pain and stiffness if the dose of pred is not high enough. Untreated PMR is felt to be more likely to progress to GCA - and then you have no real choice unless you like playing Russian roulette: ignore GCA and you will not only become very unwell but you also risk losing your sight without high dose pred. There is no alternative.

I live a pretty good life on pred - have done for 8 years. I also am on medication for atrial fibrillation - I'm not greatly enamoured of that either but it is reducing the risk of stroke or heart attack so I accept it. It's the same with the pred - it lets me have a life.

Joan, this is an old post which will only be seen by people who originally followed it.  Why not make a new post which will be seen by more people?  We all have our own experiences and attitudes towards PMR/pred - although as Eileen is here you are getting the best advice.

It's important to get the inflammation completely under control before tapering.  A very slow taper will be more successful in getting you to the lowest dose which will continue to manage the inflammation until remission, so although it seems counter-intuitive that will in fact lead to a lower lifetime total dose of pred than attempting faster tapering and most likely having to return to the higher dose again.  

Before PMR for me is 15 years ago - aging obviously has played a role there! But yes - I would say that on pred I am able to live about the same as without PMR. I have given up skiing - I did continue with PMR though it was a labour of love getting into training every winter. But I was very ill with atrial fibrillation 5 years ago and missed the following season, when it came to the thought of training and the cost of new boots, possibly new skis and the season ticket that was essential for the slow build-up plus the large numbers of tourists now that make it less enjoyable I decided to call it a day. But Michdonn on here still skis and cycles at 80.

I travel - anywhere, we are off to S Korea next week and in the last 8 years have been to S Korea, China, the USA, Canada and various bits of Europe. I just have to think a bit more before setting off. We recently spent a couple of weeks visiting friends and family in the UK. In the process I did all the driving from here, all round the north of England and Scotland and home again. Two and a half thousand miles in just over 2 weeks. I was a bit tired at the end - but so would anybody I think.

Using pred and lifestyle adjustments you can usually live almost as well as pre-PMR. As long as PMR is on the go - you won't live that well without pred. I lived with unmanaged PMR for five years (because it wasn't diagnosed) and although I lived reasonably well for a lot of the time I was never out of pain - nothing else but pred manages the pain. I was stiff - I'd had to give up the gym I went to and find one with a warm pool. There I did aquafit every morning Mon-Fri - and that kept me mobile and able to do heavily adapted Pilates and yoga once a week. I worked freelance and chose my own hours so I could do it - but it cost a lot in fees and getting there and even more in terms of time. But it didn't deal with the pain. When I had flares I could do next to nothing - I couldn't get up and down stairs without crawling up on hands and knees and stomping down like a toddler, one step at a time. I could barely toilet myself - short arm syndrome - and needed something to grab on to be able to stand up. I haven't had a bath for 14 years - thank goodness for showers! The day I was given pred I took 15mg at 10.15am, still at the pharmacy. At 4pm I got up from the computer and walked downstairs normally and walked up carrying a cup of tea. Then it hit me what I'd done for the first time in months. 

Pred isn't a perfect answer - but it is the best we have as yet. Even the new magic drug, Actemra, isn't a guarantee and must be used together with pred initially.

As soon as i started on Pred I could get in the bath again !!!! I love it.I would have been doollally 2 years ago without pred.....the pain and inability to do anything would have driven me mad.