That is so clear and so useful! No-one has put it so clearly for me, so thank you very much Eileen. I feel much better able to manage my own condition now ☺
I’m new to this forum. Just got diagnosed with GCA 3 months ago. This information is so helpful! I started at 60 mg and then went Fiebig every 2-3 weeks to 30, where I had a small flare up of symptoms and had to go back to 60 to quiet them. I’m at 50 now. 2 days ago I got the shakes (in my right hand) which 90% went away by the end of the day. I may still have 5-10% if it remaining. My right forearm muscles were sore the next day-even though I didn’t use my arm for anything that should have made it sore. I actually told my doc that’s thought I needed to taper off more slowly. I think the 10% reduction rule sounds right. I already told her that once you get to 40 mg the next reduction to 30 is a 25% reduction— which was more than my body could tolerate. I hope you and everyone else dealing with this gets your symptoms resolved and can get off this devil/angel prednisone. I’m wondering if anyone has tried (or heard of) the “Autoimmune Solution” or the “Paleo Approach” diet? A friend of a friend recommended it.
Welcome.
Michdonn uses one of the strict diet approaches but I'm not sure which it is. Whatever it is it has stopped his wife's migraines very successfully and he is reducing steadily.
What we do suggest on all the forums is a low carb way of eating - it really does help with avoiding weight gain with steroids and since sugar is highly pro-inflammatory also probably helps the inflammation too. Low carb isn't as extreme in what you leave out as the diets you mention - some people find some things make them react badly with PMR/GCA but others don't. The nightshades, for example, make no difference to me at all, omitting them just makes my diet more boring! Others find they have a flare if they eat certain things, especially ones they have tried to cut out like bread if they are low carb.
I have recently been diagnosed with PMR and I am taking 15 mg prednisone daily which seems to just control the symptoms on most days. I have had a couple of really good days and would like to taper down my steroid dose. Does reducing to 12.5 mg daily sound OK?
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...
Thanks for your reply. I am battling with this diagnosis which has yet to be confirmed by a rheumatologist ( saw one who was fixated on fibromyalgia and nerve pain).It all started following a chest infection in March this year and came on very suddenly.
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.
Would you then say with a high enough dose of pred life is like it was before PMR?
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.
Thank you.
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.
Thanks for the response Eileen. I just saw it since apparently the forum responses were going to my spam mail. I have been on a fairly low carb and very low sugar diet for a while now. I think I’ll cut my carbs down to as close to zero as I can get. Gluten seems to be a key component to cut out. I totally agree that being super restrictive (e.g., cutting out nightshade veggies, etc.) may not even help and definitely will make eating much more boring!
I'm far from convinced about gluten per se. I was eating gluten-free anyway in the early stages of my PMR and it really didn't make much difference - it turned out it was wheat that was my problem and something in the starch structure rather than the gluten. I can eat other wheats without itching (spelt and kamut and even the wheat used for French baked goods in France).
A few people have complained about things ending in spam - maybe a trawl through your settings might help? Do you use Windows10? Their recent upgrades have done some interesting things... I just look at spam every few days to be sure there is nothing there!
i was initially on 40 mgs of pred , , dr decided to taper me off by 5 mgms per week . I 'm having terrible shakes , dizzy spells . I am now on 20 mgms .
I cant stand much more if this . My legs & arms feel like lead . All i want to do is lay day down .
Wonder if i’m weaning off them to quickly ???
It is too fast. It’s possible you don’t need as much as 20 mg even, but your body needs time to adapt. Smaller steps over longer time should make it easier. Why are you being weaned off? Do you have PMR? If you have PMR you really aren’t aiming for zero, just for the lowest dose which will control the symptoms. Pred isn’t a cure, and your doctor should know that. How long were you taking 40 mg and why were you started so high?
I would now stick at 20mg for a few weeks and let your body catch up. 40mg was too high as a starting dose for PMR - not if there was any suspicion of GCA though, then it was a fair dose to start with. For “just” PMR 20mg is almost always enough. So now you are at 20mg - accept this is where you need to start and stay there. You should feel much better in a week or two. Then be sure all your PMR symptoms are controlled before starting a SLOW taper: not more than 2.5mg at a time down to 15mg and not more often than every 3 weeks, preferably 4 weeks.
And then reassess where you have got to.
Yes Pred definitely brings it on and my Dr agrees. It has subsided now i am down to 6mg.
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.