Adrenal insufficiency and tapering

I’m now at 7mg and having lots of symptoms like you!

I wake in the night sweating badly! I have aches and pains in my legs and the top of my arms! 

Dizzy spells come and go without much warning and my bladder is a nightmare!

The rheumatologist has asked me to stay at 7mg for three months and then perhaps we can come down to 6mg

Are these symptoms from my PMR and GCA or side effects from the steroids? Who knows!

I was diagnosed last November and put on 40 mg of Pred and the last ten months haven’t been pleasant! Will I ever return to normal? 

Sorry for the moans, I’m usually quite positive 

Me too—bladder is a nightmare. Worried sick. I’m at 5 1/2, was at 6 after bombing out (once again) at 4 1/2.  Last summer I also bombed out at 4 1/2, spent whole year going back down, only to have to go back to 6.  If I ever get back down to 5, I’m gonna stay there a long long time in an effort to stabilize things.  

In the meantime at 5 1/2, even when I was at 6, I’m just a sick person.  The pred? The pmr? Some of both.  But I think my adrenals are not normal because I have brain fog, I tire easily, I don’t sleep, etc.  allergies are off the charts.  I think your plan to stay at 6 for awhile is a good one.  I’m usually pleasant too—fellow sufferers have said the first 2 years are the hardest—I will “celebrate” 2 years next month, planning on big celebration!  Best to you!

I'd say you are already at too low a dose for your PMR activity - the aches in arms and legs sound like returning inflammation. Ten months is very early in a PMR journey - pred treatment is required for a median of 5.9 years. Your doctor has strange ideas - 40mg is a GCA level strating dose, higher than is generally needed for PMR. So he probably exposed you to a lot of pred that you needn't have had. And he is reducing very fast. 

A friend just told me she went back to 20mg for a flare because she was about to go on holiday to Canada. She has had a wonderful time, walking miles with her daughter on the tour. Now she will concentrate on reducing the dose - but she has had a normal holiday.

I have been on pred for over 9 years now, I have had PMR for 14 years. But I will not compromise - I take what I need to function well, not just teetering along. My GP knows that and knows I take only what I need - but she is rheumy trained and is well aware of the realities of PMR. I am below 10mg, I have been as low as 5mg - any lower led to a flare and I haven't got below 7mg since that. But I live a pretty normal life - I don't go climbing mountains like my neighbours of a similar age but life is good.

Those of you with bladder problems - it could be PMR and not quite enough pred. Or, if you are on calcium supplements it COULD be that. In some people the calcium leads to the formation of grit in the urine which irritates the inside of the bladder and urethra (the opening from the bladder to the outside) causing symptoms of cystitis. Keeping very well hydrated helps a lot there - I only get it if I haven't been drinking enough - or halving the calcium dose may help.

If you repeatedly bomb at about the same dose that is your body telling you very firmly that you have achieved your aim: the lowest dose that manages the inflammation. It isn't the dose where it happens - it is at least 1mg higher. It doesn't mean you won't get lower - just not yet. PMR has median duration of 5.9 years - so 2 years in a pretty early and being at 6mg is not bad.

I feel I’m hacking this post, maybe not, but I must ask—and yes, I know your answer but for my sanity I need to hear you say it again:  will I ever get below 6 then?  And maybe I need even higher?   I’m feeling very unsure in this up and down journey (gp had given me full rein), trying to find my way—like everyone else on here. Thank you for your help, as well as everyone else’s, always appreciate it. 

Yes - just not yet.

Once you identify that "for the moment" dose you take your foot off the pedal. Instead of proceeding from one reduction to the next, however slow it is, you mark time for a couple of months, at low doses maybe even longer. However slowly you go you won't get below the dose that manages the disease activity at the time. Once you are below 8mg you add in the complication of getting your adrenal glands to stage a graduated return to work - as the pred dose goes down, the adrenal glands have to top up that dose to the amount needed for your body to function. The slower you reduce there the easier they find it - otherwise they are targetting an ever-changing goal post. The smaller the change in pred dose - the less they have to adjust. The adjustment affects other hormones and organs - causing the common wobbly feelings and fatigue that are so common at these low doses. 

You are now at a dose that is less than the body makes - so the side effects should be minimal. It is good when a doctor lets you guide your own reductions - providing you don't make the mistake of doing everything too quickly. It takes a long time to stop a cruise ship - never mind turn it round! Slowly does it.

Do you feel good at 6mg? Can you function reasonably well? If so, give it a couple of months and then, very gingerly, try 1/2mg drop using a slow reduction plan (i.e. not overnight from all old to all new dose). If it works - try the other 1/2mg to get to 5mg. You will probably find you get stuck at a dose again - Anhaga will point you to her story - so never push a reduction or you risk another flare. But a flare caused by overshooting the mark doesn't mean the end of the world: don't deny it, accept it isn't meant just yet, take 5mg more for a few days and drop straight back to the last dose where you had been good. That is why it is important not to go too fast - you are a couple of mg down the road and the flare appears but you have no idea what dose it happened at. Waiting a couple of months usually means you know that dose was good and you can go back once you've mopped up the spill.

Does that cover it? I can't think of anything i've missed. If i have, just ask again. It does work - lots of people have done it. But it may not work this side of Christmas, or even the following one. But you will probably be at a lower dose by then.And these doses really aren't doing harm:

https://www.practicalpainmanagement.com/resources/news-and-research/polymyalgia-rheumatica-steroid-side-effects-new-findings

I was told, when first diagnosed with both PMR and GCA that I would need to be on steroids for two years! Having read several comments it seems that 2 years is an understatement!!

You ain’t just a woofin! I was told 1 year.  Looks like I’m in for the long haul. Shall we join hands?

" it seems that 2 years is an understatement!!"

You could say that!

I have been involved with the charities and the forums for 9 years, I have heard the stories of hundreds of patients, could even be thousands by now. I can count on the fingers of one hand the people who got off pred for PMR in two years. There are perhaps 3 or 4 who got off pred in that time for GCA. One lady with GCA got off pred in 2 years for that - but 4 years later developed PMR. Which does seem a bit unfair. Most people with GCA probably need about 5 years - that's what my closest friends in the charities need.

The recent study I gave the link for above is from some top PMR experts at the Mayo - when they looked at patient histories they found the median duration of pred treatment for PMR is 5.9 years. And I'd think that is pretty generally fair - obviously some people do get off in less time but 3 or 4 years is very common.

We have asked doctors why they say it - and there are some who still insist it is right and if the symptoms last longer it wasn't PMR in the first place. If they say so - they made the diagnosis... Some say they don't want to upset patients by forecasting a longer illness - but we are the people who have to pick up the pieces and comfort the people who arrive here feeling they have failed in some way because they didn't manage to get off pred. It wasn't their fault - they were given unreasonable expectations and, all too often, forced to reduce too fast or too soon, leading to flares and a return to a higher dose which slows the whole thing down. It is likely that the PMR does last less time than we need pred for - but if you have got to a moderately low dose, say 7 or 8mg, and the underlying cause of the PMR symptoms burns out suddenly, then you still have to get off the pred. And after a few years of pred, that isn't always a speedy action as your adrenal glands have to wake up and since GCA patients were on higher doses for longer that can be a bit more complicated.

Men tend to do better, get to lower doses and need them for less time, but even that is a very generalised statement. But yes - 2 years? In your dreams! Which sometimes come true but not very often.

I think most of us were told that. I am not sure if doctors say that to us so that we do not get depressed when they tell us we have a chronic disease that on average lasts 5.9 years, so they try not to depress us.

My doctor told me nothing, except how to taper, and following her instructions I a) thought I was cured and b) I'd be off pred in three months!  It was this forum which enlightened me.

I had a rheumie who diagnosed me. He told me nothing except with pred I could carry on as if nothing had happened! He got me reducing at a rate of knots and said that I should expect the odd flair when I told him I was in a lot of pain.

Unbelievable, isn't it! 

It makes you almost understand the current backlash against Experts.  It's the self defined experts that cause the problems. They think they know a lot about their little sphere and forget there is a whole big diverse world out there.

And then there are us who share our own experience and learn from that of others.!!