PMR

[Zanthy]

Think I've done this back to front I'm new here interested in the pros and cons of decreasing my doses of prednisone. Have sent another post before this. I'm a bewildered person coping with modern technology.

[1Purplecrow]

Hi, a little more information would make it easier to respond to your message. Do you have PMR and/or GCA , what and when did u start pred, and any other info you care to share. There are lots of knowledgable folks at this site, and I found this forum my lifeline as I have made my PMR journey. Good luck to you, and the Pros will be along shortly. Jerri

[Zanthy in reply to 1Purplecrow]

Diagnosed with PMR June been on 15mg Prednisone for 2 months cut back to 14mg for last 2 weeks GP suggested I I cut back by 2mg to12 mg I don't want a flare up just want to get off this prednisone as soon as possible Changed to night time to take prednisone rather than daytime as the side effects are hard to cope with don't mind going to bed feeling dizzy with tired sore eyes.My dilemma 2mg or 1mg for next 2weeks or is it just trial and error

[Car00b in reply to Zanthy]

For me the slower I have cut back the easier it has been .

I was diagnosed Sept 14 with PMR . For some years have had severe neck shoulder pain , but because pain appeared to start going into left arm shoulder and neck was given blood tests . My ESR was raised to 59 so then put on 15 mg pred because the assumption was PMR . Over the next two years had flares (which is sometimes a natural reaction when dropping prednisalone .you wait a few days and the pain is better or if it gets worse you may have to up the dose of pred to get back on an even keel )

Initially I was having blood test every time I dropped 1/2 mg . My ESR has never dropped regularey and so withmy doctor am doing the reduction very slowly .

Every one reacts differently , to reducing pred . Recently had quite a flare and panicked as it has taken me so long to get to 5.5 mg that I put my troubles to this forum and they gave me the confidence to wait it out a few days and slowly am beginig to feel a bit better .

So take the reduction to suit you . Have regular blood tests if you have a knowledgable doctor who you can talk to and see every time it's a great help .

Saw a new doctor at our practice on her first day who picked up her book of medication and told me to drop 2.5 mg pred every other day .Needless to say I didn't .

There is no race . Getting better however slowly or quickly if your lucky is preferable to going up and down with the medication .

Good luck on your journey , side effects are a nuisance. My eyes have been affected so do see your optition . Dry eyes can make things worse as well . Take things as you want at your pace , have regular blood tests and you will get there slowly but surely

[PMRpro Ambassador in reply to Zanthy]

If you have PMR then you will have to get out of the mindset "I want off pred asap". Unfortunately, that isn't how it works.

PMR is a chronic disease, in fact it is the symptoms of an underlying autoimmune disorder which causes your immune system to attack your body by mistake, thinking it is "foreign". This results in inflammation which causes swelling and pain. There is no cure for it, it is just possible to manage the symptoms with pred which combats the inflammation - and so reduces the swelling and pain to allow you a better quality of life until the underlying cause burns out and goes into remission. Although many doctors will tell their patients it takes 2 years that isn't the whole truth - which is that for about a quarter of patients they may be able to stop taking pred within a couple of years but they are then at a higher risk of a relapse. For about half it takes up to 4 to 6 years and for a quarter of us it will last longer. There is no way of telling which group you belong to in advance.

You won't stay at the starting dose for the entire time though. You will now reduce to find the lowest dose that gives you the same result as you starting dose did - not a dose that leaves you barely able to manage just so you can be a t alower dose - if you do that, the inflammation will build up slowly until you tp over into a real flare and need to return to a much higher dose to get it under control. Often it is then more difficult to reduce - no-one knows why, it just is. The best approach is to remain at the starting dose for 6-8 weeks until all the symptoms are improved as much as they are going to improve and, if your ESR and CRP were raised, until they are stable and no longer falling. That MAY take a bit longer. Then you can start to reduce.

In other disorders where pred is used they give a short tapering course, 15/10/5 over a few weeks. That approach does NOT work in PMR. In PMR it is helpful to reduce in very small steps - as your GP suggested for the first drop. I don't understand why they then suggested 2mg for the second step - it may work, it may not. There are two aspects of the slow reduction: one is that your body will notice the reduction in dose less and it will be less uncomfortable and the other is that it allows a much more accurate identification of the lowest dose point.

When you reduce the dose of steroids your body misses it - and one result is what is called "steroid withdrawal rheumatism" where you have very similar symptoms to the disease you are taking it for. The smaller the dose reduction the less it will be. This almost always happens immediately you reduce - the next day. The other is you may go below the "right" dose - and you experience a flare in the symptoms because the dose is no longer enough to manage the new daily dose of inflammation due to the underlying disorder. This happens after a few days, sometimes even a few weeks, as the inflammation builds up again to noticeable levels. By using a small dose reduction you make the withdrawal pain less likely and you can be more sure the returning pain is a flare. Then you stop reducing straight away and go back to the last dose that worked well and wait a bit before trying your next step down. It doesn't mean you won't get further, it means just not yet. If you are OK at the new dose you wait a few weeks to be sure it is still enough and then you can carefully try another drop.

Top US experts some years ago said no reduction should be more than 10% of the current dose - below 15mg that is less than 1.5mg so 1mg drops are sensible. Below 10mg you need to be even more careful.

The approach described here

healthunlocked.com/pmrgcauk...

has allowed a lot of people to reduce further than ever before with other schemes. It is being used in a clinical study in Leeds so is rheumy-approved.

If you learn nothing else with PMR, you will learn patience! You will read what I have written and think it's all poppycock. It isn't, I'm afraid, I'd like to be off pred too 0 so would all of us - but I have a choice: take enough pred to manage my symptoms well and live a normal lifestyle or go back to no pred and be practically housebound and in constant pain. I had that for 5 years because I wasn't diagnosed. I'm in no hurry to go back there. There is no virtue in thinking "I'll manage on a lower dose and put up with the pain" - the inflammation will just build up again and you have all the downsides of pred with none of the benefits.

You can often avoid the weight gain by cutting carbs drastically - pred changes how we process carbs and that leads to spiking blood sugar levels and insulin production and deposition of fat in particular places: on your face giving the moonface, around your middle and on the back of your neck causing a "buffalo hump". I had them all - cut carbs and lost 36lbs and the fat face and got my waist back. If I eat some carbs I don't lose weight, too many and it goes back on. It's a small price to pay - I still have pizza now and again and in summer I eat ice cream, not every day but most weeks. It's normal, I live in Italy! But I eat next to no bread and when it is half a slice or half a roll for the taste, no fruit or root vegetables - but loads of other veg and nuts and seeds.

I'm sure it is all very overwhelming - but you will adjust to your new normal. That, by the way, includes learning to pace yourself because that is also important. Your muscles remain intolerant of acute exercise and not doing too much at one time and then resting for a bit (not doing nothing perhaps, but something totally different) will let you do far more than if you push yourself to do too much. And that will also allow you to get away with a bit less pred - not a lot, but everything counts.

healthunlocked.com/pmrgcauk...

[GOOD_GRIEF in reply to PMRpro]

I have a question.

How do you do without carbs? I tried low carbs when I was healthy, and wound up without enough energy to last through my typical 16-18 hour day. I can't imagine even trying that now...

[PMRpro Ambassador in reply to GOOD_GRIEF]

It takes a few days for your body to adjust - and if you eat more than your minimum carb load in the meantime you have to start over. Some people say they can't get on with it - but for most of us it hasn't posed a problem. At our age an 18 hour days is too much anyway - and definitely is when you have a chronic illness!

[GOOD_GRIEF in reply to PMRpro]

I tried limiting carbs for 6 weeks a decade ago when I wanted to wear a particular dress for an occaision. I was tired, cranky and listless all the time. Never again. Other than that, I have always eaten a healthy and well balanced diet, following my grandmother's adage of "Everything in moderation, including abstinence."

And here in NYC NY, USA, if you want to keep your job, you do what you have to do. Without employer sponsored health insurance, individual policies are higher than mortgage payments. And since they're now talking about repealing the protections in place on pre-existing conditions and allowing age-related premium hikes of 300-500%, this is no time to be shaking the employment tree. If they succeed in repealing the law we call Obamacare and I lose or leave my job at 62, my insurance premiums could be $20,000+ annually. Even higher because now I have PMR. I don't even want to think about what those costs will be when I can retire at 67 1/2.

Some days, that seems a long way off.

[Celtic PMRGCAuk volunteer]

Zanthy, you have already had helpful replies from Purplecrow and CarOOb, but I just wanted to add that I think your GP's advice to reduce your steroid dose by 2mg after having reduced from 15mg to 14 just two weeks ago might present a problem. Remaining a month at the new dose is far less likely to result in a flare, plus it is generally recommended that no-one should reduce by more than 10% at a time. If it was me, I would wait another couple of weeks and then, providing your pain remains under control, try the next reduction. and if you are someone who had raised blood test markers at diagnosis (ESR and CRP) then those tests should be repeated before reducing. The slower the better - as CarOOb has said, the slower she has cut back the easier it has been.

If your eyes feel tired, you may just be experiencing dry eyes in which case there are some helpful drops available over-the-counter at the pharmacy that will help. Do get them checked out with a good ophthalmologist.

[DorsetLady PMRGCAuk volunteer]

Hi Zanthy,

Good advice from others as usual.

We all want to be off Pred as soon as we can, but it's not as easy as that. Whilst you're reducing you need to ensure that at all times the inflammation is kept under control, which is why we recommend a small reduction each time, plus ensuring that at each reduction you don't have any problems. That's where the blood tests help. Early on, I had mine tested monthly, and only reduced after the result was known, and if it was okay, and if I had no symptoms.

If you reduce too quickly or in too big a step you risk the chance of the inflammation getting out of control again, and you won't realise until it's too late and you're in a flare.

Although it's a bind, you really need to go slowly - that way you should have a trouble free reduction. Which is what we all aim for, but don't always get!

[Retailmonkey]

Hi Zanthy

Like you I am new to this but you are already in good hands from the replies that you have had. I decided early on that I was going to find out as much as I could about what was going on (I have both GCA and PMR) and that has proved most useful. The thing that comes out of it all for me is that there is no cure, it can be managed but you have to be very aware of you reactions and, in my case, I have adopted the midset that I am going to be on some kind of treatment for the rest of my life (unless a solution is found) and any reduction from that is a real bonus. That for me takes all of the frustration ot of the condition