Confusing advice from Rheumatologist

[LizMitchell]

I recently had a short synacthen test for my adrenal glands, the second one since 2015 when I was diagnosed with GCA and PMR! When I had the first test in November 2018 I was on 6mg of Pred daily and 10 mg of Metotrexate weekly, I was notified that there was a “degree of adrenal suppression and that it was unlikely that I would be able to stop taking steroids”

When I had the recent SST I was on 5mg of Pred, reducing to 4.5mg using the DSNS process. The result came back “suboptimal, suggesting there is some adrenal insufficiency”

However, and this is where my confusion lies, my Rheumatologist has suggested that “I could still try to reduce the Pred dose very slowly over the course of time, but that if I feel unwell in any way I will need to increase the Pred dose” I have interpreted this to mean I could go into Adrenal Fatigue or Failure, which could be life threatening and a bit scary to say the least! Please correct me if I am wrong.

To furthermore add to my confusion, during a conversation with my Rheumy prior to having the recent SST, she suggested that my PMR and GCA could well have gone by now, the thought of which had never crossed my mind before! If that is the case and I am “only” dealing with my adrenal insufficiency, I am questioning as to whether I should continue with the weekly 10mg of Methotrexate? We also discussed increasing the MTX to 15mg weekly to assist with the further reduction of Pred. I am struggling to make sense of it all!

I know that PMR and GCA have their own agendas and are completely in charge, making it very difficult to treat and to endure! In 2015 I had been given the expectation that I would be taking steroids for 14 months.. how wrong was I and there is still no light, not even a glimmer, at the end of this interminable tunnel! Sorry for the rant, but I know that it is only the people on this forum who understand! Thank you for being there.

My sincere apologies for the long post 🥴

Best wishes to you all x

[PMRpro Ambassador]

The only thing that will encourage your adrenal glands to produce more cortisol is there not being as much pred circulating in your system. The body requires a given amount of corticosteroid to function properly - and too much is not good so there is a very tight feedback system to control how much is produced. It is a bit like your central heating boiler and having a wood burning stove in the room where the thermostat is. If you light the stove and that room is warm, the thermostat tells the central heating boiler it isn't needed. As the fire burns out, the room cools down and the thermostat signals more heat is required to be produced by the boiler.

As long as you are taking above about 7mg of pred, the body need not produce any more corticosteroid in the form of cortisol. Obviously we are above that level for some time. As you reduce the dose, you reach a point where the adrenals need to produce a top-up for the body to function well. It isn't a sudden on/off job, it returns gradually and at first is unreliable. for some people. For others it slowly wakes up and functions fine, they rarely feel any adverse effects.

The majority of patients are able to continue to reduce their dose slowly and the adrenal glands slowly take up the slack. A few don't. But the trick is to take tiny steps down and space them well apart so the body is not having to make big adjustments or too often. Many doctors go at it like a bull in a china shop and wonder why patients struggle. If you reduce too fast, you WILL be at risk of an adrenal crisis, the same as if you were to stop pred suddenly, But if you creep down the doses, you may feel very fatigued and have other unpleasant effects of low cortisol but with patience and care you will get adrenal function back.

There is no need to have SSTs all the time - your GP can do a basal cortisol test quite easily and that will monitor how your adrenal function is returning. In fact, some endocrinologists won't do an SST until you are below 5mg and many prefer to wait to 3mg. Recent studies have suggested that even 3mg pred is enough to function well and above that the adrenal function will be suppressed so the result is unreliable.

Your PMR/GCA might have gone by now - but the only way to be sure is to get off pred altogether for some months. Prof Sarah Mackie said this morning - one in 5 patients still needs pred after 5 years. And there is no way you can forecast who. The concept of increasing the MTX is that it seems to smooth the path of reducing the pred for some patients - not all. Keeping the pred low is the only way of encouraging production of cortisol. But whatever your rheumy thinks, if your adrenal function doesn't return, then you will need either some pred as a replacement therapy or they will have to give you hydrocortisone - another corticosteroid with its own adverse effects, Forget about whether PMR/GCA have gone, and concentrate on reducing the pred dose in the right way - and see if you CAN get to zero. Someone reported getting off pred after 11 years recently - it can happen.

[RoadTrip in reply to PMRpro]

“But the trick is to take tiny steps down and space them well apart so the body is not having to make big adjustments or too often”

Is the dead slow and stop taper for steroid withdrawal or to help the adrenals or both?

I have reached 6.5mg and due to go to 6 mg early next week. I have dropped straight down recently as tended to get worse side effects by tapering the dose down. Just bit concerned that adrenals may start to not cope.

[PMRpro Ambassador in reply to RoadTrip]

Both really - but everyone is different and it is what works for you. If you can drop all in one go without problems, then you don't need one of the slowed tapers. Some people struggle to reduce at higher doses. I wouldn't suggest a slowed taper to someone who was able to drop from every day one dose to every day the new one and not notice it. Some can.

[RoadTrip in reply to PMRpro]

Many thanks, was just bit concerned re adrenals and the fact that most do slow taper between doses. I will keep going as I am and hopefully will keep working.👍

[PMRpro Ambassador in reply to RoadTrip]

Often it isn't a problem until 5mg, sometimes lower. You have to wait and see how you get on.

[RoadTrip in reply to PMRpro]

Many thanks, noted. Good few months away yet to reach that level, even assuming all goes to plan.

[lisbonportugal in reply to PMRpro]

Dear Ambassador, I continue to learn from you. Thank you for this detailed response to Liz Mitchell. You are a maestro on the subject of prednisone and the this treacherous auto immune disease. Your writings are so literate and clear. You are taking your time and energy, to respond to confusion and fears and it is so appreciated by me. A million thanks again. Alexandria

[RoadTrip]

Many thanks, interesting article.

I’ve been tapering in 0.5 mg drops every month or so, since reached 9 mg ( the second time) from70 mg for GCA, so slowly.

Just not sure if I need to try and taper in each drop more slowly now, as below 7mg dose rather than drop 0.5 mg in one go, for the adrenals.

The gradual taper of 1 day new dose, x days old dose, did not suit me as just seemed to mean suffered withdrawal on each day reduced rather than the once if reduced and stayed there.

[Pr0jection]

Can I ask what the new targeted medication was called, to stop the inflammation? Thanks

[RoadTrip]

Very interesting, thanks. It certainly shows we are all different, glad to hear it worked well for you and has continued to do so.

I have been bobbling up and down a bit since reached 9 mg and lower, 6 .5 mg being lowest so far. Slow and steady for me, but generally happy with progress. I have really no medical support, as discharged from rheumatologist and doctors just sign repeat prescriptions.

Many thanks for your help.

[HeronNS]

My reaction when reading your post was, what was the doctor thinking, having you do a synacthen test when your pred dose was still at a level which inevitably causes adrenal suppression! I suspect you have been needlessly worried by the result, which really couldn't have been anythig else. As PMRpro notes, most doctors will wait until a patient is at 5 mg, and preferably at 3 mg pred, and even so the adrenals don't go back to full function instantly the moment you're below 5 or 3 mg. I haven't had a synacthen test, but a morning cortisol test some months ago showed that I have cortisol production exactly in the middle of the normal range - this was after nearly 60 hours after my previous pred dose. (Have been on pred since 2015.) This is probably an easier way to monitor things for the time being. It does take time for things to go back to normal. And if your GCA or PMR symptoms don't return as you continue to taper, then all to the good, you likely are "only" dealing with slow return of adrenal function. Only you know whether your GCA/PMR is gone, no doctor can know this. Treat your fatigue symptoms like you have been treating your PMR symptoms, and taper very slowly and only when ready. A little step downwards once in a while, as in a slow taper method, to nudge the adrenals will help. Good luck!

[Tiredofpmr555]

Last March I was down to 3mg of prednisone and found out I had to wait until August for an appt. with and endocrinologist and testing. I decided to continue to reduce and by Aug. when I was tested I was down to 1.5 mg,

I felt pretty bad most of the time with a lot of nausea and lack of appetite and two episodes of all night vomiting and diarrhea so it wasn't the best of times but the test showed my adrenals were working again and I could drop the prednisone so the misery was worth it. I imagine not everyone goes through that kind of extreme discomfort but I got off of the steroids and that was important to me. I am now back to all of the old age aches and pains that I had before PMR came along LOL

[RoadTrip]

Many thanks, for your kind wishes.

[Preacherball]

Very interesting and well written article. There certainly is medical lingo I will never fully understand, but it also provides the big picture as to why steroid tapering is necessary and how to best do that. This is info. you will never receive in a 30 minute rheumatology appointment and I think any additional information about these illnesses and how to manage them is helpful.

[LizMitchell]

A big thank you to all of you for responding to my query, the support from this forum is always very much appreciated, and the wealth of knowledge and advice is so helpful and supportive. I couldn’t do it without you! Take care everyone x

[Preacherball]

I feel like I have a very good rheumatologist who diagnosed quickly and correctly my GCA in June of 2021. We did the six month taper from 60mg pred. down to 0, while also taking TCZ. What I wasn't prepared for (although he mentioned the possibility) were the 3 flares I have now experienced. I guess I naively thought that, like most medications, you take as prescribed and when you're done the illness has gone away. In all 3 cases (flare 2 and 3 were close together) it happened after I had stopped pred. With both #2 and #3 I had done a fast taper down to 0, which obviosly proved not to work. So I started up again at 10mg, plus TCZ, and this resolved my symptoms. Now I'm tapering by 1 mg every 3 weeks, until I get to 5 mg, where he wants me to stay until I see him again in December. I'm at 8mg and feeling fine. As even the article said, "It's more art than science" and depends on the individual. I guess that's what threw me initially, thinking it's the science of meds that typically fix the problem. So, I'm learning as i go and, assuming I get to 5mg in another 10 weeks or so without a new flare, we'll see what next steps to take after that. Thanks for sharing the article and for your insight.

[PMRpro Ambassador in reply to Preacherball]

TCZ only works 100% for about half of patients to get them entirely off pred. Half have other mechanisms causing the inflammation in GCA and require pred to manage that since TCZ is very specific, as are all biologics, and it doesn't control the inflammation they cause.