I am currently reducing to 10mg ... over the next few weeks. My Dr is keen for me to get below 10mg .....so far so good; no pains or tiredness yet. On the whole I think the pred is providing something I have been seriously lacking for a while. Before diagnosis of PMR I had periods of feeling unwell with exhaustion (put down to menopause)..... and then the pains started which led to blood tests and steroid treatment.
I have wondered since if my own production of cortisol was particularly erratic at times pre pred? Are there any tests that check your own levels of cortisol as you reduce down past 7.5mg ? (This seems to be the amount most people produce naturally when well).
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suzieh
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I am now down to half a mg of pred. In answer to your question I think it has taken months for my adrenals to produce enough cortisol and every drop below 5 mg I felt absolutely fatigued and shaky for several weeks after the drop then stabilised again. Now on ths tiny dose (since 1.5 mg really)I am having adjustment problems and my BP has gone haywire after years of being managed quite well medically. I think this is the adrenal effect...the doctor doesn't,t really know but agrees something is going on.
Thanks for you reply; it is always interesting to hear how others are getting on to build up a bank of knowledge and info. Half a mg seems such a little amount but I guess it must be doing something? Hopefully your body will adjust soon and you will start to feel better.
I have been feeling a bit odd this week (usual for me as I reduce 11mg one day 10 mg the next - by next week 10mg every third day and hopefully then onto only 10mg every day - and feeling well again) Reducing seems to make everyone feel unsettled and a bit shaken
The adjustment to decreasing doses takes time. I'm going down to 2mg and was feeling really weary last week, so am now taking 3mg every three days and 2mg on the others. So far so good. Any reduction at this stage is a big percentage. You've done well, Suzieh - good luck.
Thank you for encouragement! I feel pleased with progress so far especially as my Dr has just told me Vit d levels were good (must be the efforts with the "healthy diet" multi vits and exposure to weather every day - dog walking and gardening!)
There is an explanation, medically checked, written by a patient for patients on Steroids and What They do. It can be found under Useful Medical Information on this website.
There is a test to see if your Adrenal Function is working. I had this done when I was admitted to hospital with A/F and had been off steroids for only six months. The adrenal glands were working normally. The reason why it had only taken six months from the last steroid was that I had been on 2mg for a whole year before I stopped the steroids.
Thank you so much for this link - really useful info!!
How long did the adrenal test take? Did you have to be in hospital to have it done?
I am amazed that a small dose of steroids (2mg) can make such a difference between feeling well and not - is there any long term risk to taking a low dose?
I feel so much better taking the steroids than I did before.
Like others I am finding the reductions below 5 tough. My GP says that it takes the body a while to adjust to the new dose. At just beow 5, I was very tired and had dizzy turns for a while until my body coped. More recently ie below 2.5 I have picked up every infection going just after a drop and also felt more achy for a while. I had hoped to be off the Pred at the two year mark but it is now looking doubtful.
I seem to be ok at present so if things go well Dr says I can reduce 1mg a month (only reducing with her advice after blood tests!) I am lucky as she is willing to phone me to discuss how I feel and she does listen!
Hope you are feeling better and not so wobbly. I take extra vit C tablets when unwell - it is supposed to be good for all sorts including shortening infections and reducing stress levels. I think they work!
It was just a simple blood test. I did not know it could be done, but as I had been admitted twice in seven days and they were a bit flummoxed they talked to me about the GCA which had gone into remission and they asked why I had not come to them earlier when I was feeling so exhausted. I then told them about the adrenal glands etc.
Once you get down to 7.5mg and below, your glands kick in slowly. Some people are on 5mg and below for life. I was told originally that I would probably be on 1 or 2mg for rest of life, as it turned out GCA went into remission. Side effects on low doses are practically zilch as it is about the same as your body produces. However, what one must remember is that when your glands are working normally and then you go into 'fight or flight mode they produce more to make up for the loss. But on pred once it is used up then you have to wait for your next dose. So that it one reason to learn to pace yourself, avoid stress and above all, listen to your body.
Dropping Pred, never more than 10% at a time is current thinking and we have proved this over and over again. If you do it in a pattern it is easy. If you want the pattern PM me.
If you are not doing a pattern slow dropping and fooling your body so you don't get withdrawal symptons, then before you take a drop, clear the decks for the next 5 or 6 days and do as little as possible, this enables you to see if it is withdrawal or it is too soon.
Once your are down to 5mg it is best to follow a pattern and do it in 0.5mg drops. If you drop too quickly .
Hope you explored the rest of the site, loads of tips and tricks particularly in the Newsletters.
I had an adrenal function test done last year, as said it's just a simple blood test to establish a baseline, then an injection to stimulate the adrenal glands with more blood tests done after one hour, two hours and three hours. It was rather boring as it meant a whole morning at the hospital with not much to do - I was seen separately to the other clinic patients and spent the hour wait each time just wandering round the hospital or reading in the canteen area, I didn't have to stay in the clinic.
The outcome was as expected, I have no adrenal function left and will be on 5/6mg Pred for life but I emphasize that it was expected and I feel it is no big deal. I can increase the dose if a crisis happens and I have done so, but it was no problem getting back to the 5mg following the increase.
I am at low dose of 5mg after continues tapering fromantic 50mg for 4 months till now..But don't see any difference..Ai had insomnia starting at 40mg and till now facing same..Sleeplessness is biggest problem here..
I see an endocrinologist and rheumatologist trying to get me off the steroids. I struggled to get below 5 mg Pred for years and finally did it last year to 4.5,very very slowly. After a couple of days feeling rough I felt fine and had no PMR symptoms and a month later went to 4. Feeling OK, a month later tried to get to 3.5 and started to feel quite unwell. Rheumy thought adrenal insufficiency and made me go back up to 5. Didn't improve so endo switched me to hydrocortisone, 20 mg a day which is about the equivalent of 5 pred. This meant they could do a synacthen test to see if the adrenal glands are capable of working and the result came back at 302 nm cortisol rising to 374 with synacthen which is only just below normal. That's better than when I had the synacthen test 3 months ago when I was on 5 pred and the endo is very optimistic I'll continue to improve if I stay on HC.
However, as I'm still feeling unwell and I think have a bit of a relapse of PMR symptoms eg stiff shoulders and neck the two specialists and my GP are trying to work out what best to do next. If I increase the steroids the adrenals won't get moving again but I feel a bit unstable on HC, OK one day but maybe not the next, particularly fatigue. I've been warned that your adrenals going to sleep because they're not needed is the equivalent of a medicinally induced form of Addison's which is why you can't stop steroids suddenly, and to double the dose if I feel unwell and also been given an emergency injection kit of HC in case I have an 'Addisonian crisis' but assured it's very unlikely. The endo says stick with it and is optimistic but it could be up to 10 months till the adrenals really get going again but my GP.
While you're on a high dose of pred your adrenal glands shut down because there is nothing for them to do. They should hoefully start to work again when you get to around 5 or less and then that's when you need to have a synacthen test to see if they are capable of responding. Your rheumatologist can arrange that. In my case I had to switch from pred to hydrocortisone and that did the tick, I'm back to normal now and off medication.
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