Slow reduction methods

[Johnone1940]

Is it recommended that either of the slow reduction methods used by PMR PRO or Ragnor can be use to stimulate the Adrenal glands or is there a different recommended treatment for awakening the Adrenals.

[SnazzyD]

I’ve not heard of any. When I asked my Endocrinologist whether the problem was the adrenal glands not listening to the brain, or the brain not picking up the low cortisol in the first place or the parts of the brain that need to speak to each other actually aren’t. He shrugged his shoulders and said, “all of the above possibly, we don’t know”. So if you don’t know where the problem is, you don’t know what to do for the best. Since we know that the brain won’t get the message unless there is a lack, we do the reduction in the hope that the body finds a megaphone to say, “hello! We’re struggling here!”. As has been said in replies to your last post a Synacthen test will simulate shouting to the adrenals by the pituitary gland in the head and if they fire up then, you know that the issue is more likely to be elsewhere in the chain. With your history I think the GP really ought to be referring you to an Endocrinologist if they are not happy to independently ask for a Synacthen test in hospital. My GP did and the result got me a hot ticket to Endo which saved time. The other reason is if your adrenal function is long term insufficient, specialists can finesse your steroid levels and indeed the type of steroid instead of using Pred all the time. That’s not really the GP’s call unless they have a specialist past.

[Johnone1940 in reply to SnazzyD]

I had the scheduled telephone appointment with my GP re my meds review it was has i suspected that he wanted me off the preds I explained to him that I had tried to reduce but had problems with fatigue etc at 3 mg and had to increase my dose ,back up to 5 mg also that I suspected that my adrenals could be the problem and that I had previously requested a synthacen test to no avail. He then said that he wanted a face to face meeting to discuss the matter further. At the meeting he then agreed to put the preds back onto my repeat prescription for 3 months referred me for a dex scan also a synthcen test I now have dates for both . So progress as been made. I am now going to try to reduce further below the current 5 mg in order to make the test more accurate.

[SnazzyD in reply to Johnone1940]

Good work. My Endo wasn’t happy with Synacthen test until someone was on 4 or less. He said that 5 was sort of ok but could be a bit iffy in some people. Good luck.

[PMRpro Ambassador in reply to Johnone1940]

Mind you - if you are on 5mg the synacthen test will almost certainly show impaired adrenal function so he CAN'T take you off pred safely. Ask him if he tells his RA patients to get off THEIR meds? In the absence of anything better, pred is our DMARD, the mainstay of management of a chronic rheumatic disorder. He needs to do some background reading - or listen to the informed patient.

[jinasc]

You wrote "The slow tapering method isn't that special".

I totally disagree with that statement.

There was a small trial done on DSNS by a Leading Researcher on GCA & PMR in the UK. They published the result in a Newsletter I used to write and edit and they had found a benefit.

I have been around for a long time now and I have yet to meet anyone, who uses the slow taper, that has not found a benefit.

One of the major problems was when you were taking a large drop, say from 60mg to 50mg for GCA and 5mg drop for PMR - most of had to clear the decks for the following 5 days when you started the drop to assist with the withdrawal symptoms. When I met Ragnar who had both and he told me about his tapering plan - two people tweaked it and it worked.

We always say take the plan you have chosen to your GP and discuss it with them - most of the time they do not want to know. Why ? Because we are patients .

It took five years of hard work to get them to change the age for people presenting with PMR - if you were not aged 60 onwards it could not be either , even if you were 59.

We proved them wrong with the help of many people filling in forms and then pulling together the stats and two women who did all the work and were on a patients representative group. The guidelines were altered down to 50 onwards.

The latest research which turned out to be correct, was again done by patients and also helped by a lot of people on here who filled in the forms etc. This resulted in it being picked up by the NHS and confirmed and they did more and now Hearing Loss, tinnitus etc has now been taken on board and will be published in the next set of Diagnosis and Treatment of GCA. You can read about' Your Ears' (Involvement of 8th Cranial Nerve) in the frequently asked questions.

I know we are have difficulty getting this across to most of the medical profession - but at least they agreed to no more than 10% at a time when starting from your initial dose.

Are you a medical person?

[PMRpro Ambassador]

The only way to reawaken the adrenals is to get the pred dose as low as possible, at least down to 3mg. That is low enough to poke the HPA axis into life if it is able to do anything, The least uncomfortable way to do that is to go slowly and be patient.

[Poshdog in reply to PMRpro]

3mgs? I had hoped my adrenals were showing some kind of life at 4mgs. Had the terrible fatigue from 7 to 4, now coping well but no way is body thinking 3.5 is a good idea

[PMRpro Ambassador in reply to Poshdog]

I meant for reliable performance - they do do something sooner in a lot of people, not all though. Endocrinologists seem to see 3mg as a point where their testing can be believed.

[Johnone1940 in reply to PMRpro]

I did manage to get down to 3mg and stayed on that dose for about 6-7 months felt well for most of the time having odd days of extreme fatigue,tiredness, and irritability although only a little increase in muscle pain. Just before I increased my dose to 5mg the fatigue factor became very pronounced i then found myself in a quandary, was it a return of pmr (flare ) just old age or now as been suggested an adrenal problem this leads me to where I am today .

[PMRpro Ambassador in reply to Johnone1940]

I had a similar experience about 4 years ago - 4mg, fine for months and then I tried for 3.5mg but could feel sore thigh muscles already. And I flared good and proper and been like that on and off since. I got it under control and reduced a bit and then my husband was ill and then came Covid and been in a constant flare since really.

[Johnone1940 in reply to PMRpro]

My own experience with pmr and preds has been quite a Good one as compared with most people who post on this site. I think that the main problem i face is deciding that when things take a downturn is should I persevere and to try to battle through or increase my dose of preds perhaps the test for the adrenals will give me more guidance fingers crossed.

[Boss302Fan]

I too disagree with your statement. In the USA I had to put up with the NICE taper (what I call the stair-step approach) for about 5 months before finding this site and learning about DSNS method and DL’s 5 week simple taper. I switched immediately to DL’s simple taper. During those 5 months I had 3 Flares and 24 hours after the decrease I felt whoozy and out-of-sorts this lasted for about 8 hrs. The decreases were 10 mg every 4 weeks until I got to 30 mg, then 5 mg to 20mg, 2.5mg every 3 weeks or that was what my Rheumy tried and I flared at 17.5mg and I went back to 25mg and started DL’s approach. Since then I’ve had 2 minor Flares, and no Whooziness during the tapers. Also using the 10 percent approach. I’m now transitioning from 2.75mg to 2.5mg. Still no side affects. No flares, virtually no side affects from Adrenal deficiency. In week 3 of taper to 2.75mg during heavy physical activity I got nauseous . I immediately stopped and rested for about 15-20 mins and it subsided. I rightly or wrongly attributed it to Adrenal deficiency. Regardless, it hasn’t happened since.

You can try to tell me there’s nothing special about the slow taper but coupled with smaller incremental decreases I believe the evidence of its impact on my recovery was significant and you are wrong.

[PMRpro Ambassador]

Are you suggesting it has ever been suggested that DSNS "stimulates" adrenal function? Certainly not by me.