I am back on 8 mgs having tried to drop from 3 to 2 and a half and having a massive flare.
I would have thought that 8 mgs being above the physiological level for cortisol production, which I have learned from this site is around seven and a half, that I would have more energy?
But NO! I am still deathly tired most of the time. Any thoughts anyone?
Adrenaline! can’t remember. Did you have your Cortisol levels checked ? It takes an awfully long time for your, or some people’s Adrenal systems to get going again. This could have contributed to the flare symptoms. Extra Pred doesn’t seem to work immediately, to remedy the situation either. It’s like they have to be coaxed. Some endocrinologists, like mine, want you on hydrocortisone 3 x a day because it mimics the way your own system should work. Here am I sleepless having recently got from 6 mgs to 5 mgs….why? It’s a very complex system. My Endo draws me diagrams and I am no further forward. Sorry Louisa, it must be a blow!
Hi Jane. Thank you for your reply. No I have never had cortisol levels checked. Is that the same as a Synacthen test? Sorry to hear you're not sleeping that's awful. I am finding 2 Amytryptiline taken around 8 pm are really helping me.
Thanks Louisa, I did take 10 mgs of Amitriptyline an hour before bedtime in the very early days of PMR and Pred. Maybe it would work for me again?
As I understand it, you can have a morning Cortisol test the results would indicate whether a Synacthen test should also be done.. I failed my test at 5 mgs and then my levels had sufficiently recovered at 3 mgs. I don’t know if I will be so lucky this time after GCA/LVV.
It would be worth a try Jane? I have recently upped the Amytryptiline from 10 - 20 and I find I am sleeping much better.
Although you may be below the physiological level when adrenals need to start working it’s not like flicking on a switch……they take time, sometimes a very long time to get the message. Been there, blah, blah, blah.
Have a look at this link -
healthunlocked.com/pmrgcauk...
In the meantime, plenty of rest, and patience is required.
Thank you DL . I must imprint your last line on my brain and repeat it like a mantra!
👍
Not only is it not like a switch as has been said, it is also not like a number on a look up chart where this or that happens at a given level. Some people find 8/7mg is a ‘safe’ zone where they can return to feel fine. Around that level I found that it was a horrible no man’s land where it was high enough to dull the adrenal axis but too low to get what I needed. For this reason I felt rubbish until 5mg at which point I started to get more good days. Also, just because you feel ok on a dose on one day, doesn’t mean its ok on another or even varying during the day. Without reading back I don’t know how you reduced as in over how long. I was doing 0.5mg introduced over 6-14 weeks. What you are doing in life, how well you are generally, even the weather can causes your need for cortisol to fluctuate. It took many months to get anywhere. It is frustrating for those who don’t swing back into life to find that all the patience exercised earlier on has to taken up a gear at a stage when it seem like it should be an easy home straight.
How long did it take you to get from 7 to 5mg, Snazzy D? I seem OK at 7/6.5mg but have experienced low mood, fatigue, irritability and then some stiffness at 6mg so have just gone up to 10mg for a week or so re PMRpro's suggestion. Thankfully feeling a bit better in myself but still tired as couldn't sleep well at 6mg. Just hoping for a little bit of hope - it would be encouraging to feel that if you can eventually get through the 5/7mg gateway then things might begin to feel a bit easier. As you and PMRpro say - many things can affect and it is winter - not my favourite time - and I have a knee problem which is painful.
If your stiffness is due to inflammation then tiredness could be due to that. What have you been up to though? Is it possible you have over exerted the muscles and are getting payback? It took about 14 weeks to be happily on 5mg from 7mg. I slowed down even more after 5mg. I didn’t feel nearly normal until much lower and even then it took a good 18 months after stopping Pred to not have to consider it all the time. I didn’t try to set my sights on a goal because basically you can’t make an accurate one.
My left knee is painful - began about 3-4 weeks ago and at Christmas could hardly stand on it. Slightly easier now but can't walk very far. That, in turn, lead to sciatica on the other side which has calmed a bit now but everything feels out of sorts. That's why I didn't notice the PMR or whatever. It crept up behind this - just noticed I was a bit weepy, irritable, couldn't sleep and then, gradually stiffness crept up behind that - first in lower back, then hips and finally shoulders, so I suppose it was triggered by the knee. I used DL's slow taper from 7mg, was fine at 6.5 but had not long finished the taper to 6mg - then the knee started.
So, it didn't take too long for you to get to 5mg. Maybe I need to sort the knee out first. I will reduce back to 7mg soon and see how things go. It feels like one of those hamster wheels - travelling but going nowhere.
Thanks for your response.
"Maybe I need to sort the knee out first."
I'd say so - if you can. Constant pain and disability, even if it is low level, is draining and feeds the PMR. Sort the add-ons and often the PMR improves too.
The fatigue isn't only due to adrenal insufficiency - a lot of it is due to the autoimmune part of the disease. You've had a flare - it's contributing more to the fatigue. And while pred is said to give you an energy boost, it is more usually found with higher doses than just 8mg. I can't say I ever felt it at 20mg either!
Wise replies ! I wish I knew the answer , all I know is that my fatigue currently is the worst ever , overdoing it on Christmas Day when I had a surge of energy has knocked me sideways . We are all different and, for me , fatigue has been a huge issue for me all the time (I do have an active job) . Pacing and patience.....I'm speaking to myself as much as you here ! I do feel for you though, it's so hard not being able to have the energy to do even simple things like a short walk . On the upside, the bus driver on the bus which I can hail from the end of the road is beginning to recognise me 😄
Thanks Jigsaw. It's always comforting to know others feel the same. Don't know how you manage to work with PMR though?
I'm in the process of taking early retirement, I teach music in a large primary school and it's just too much now . I can work , just about, but then can do nothing else . Have been having increasing amounts of sick days so it's time to stop . Then I can hopefully do more than I can at present!
I am so sorry to hear this Jigsawlass. To have early retirement imposed upon you by PMR is so unfair. I had to retire two years ago from a job I loved - performing the story of a convict woman to tourists here in Hobart at a historic site. I was outside in all weathers every day & that plus PMR was too much!You will find a huge sense of relief I am sure once you can give up what must be an enjoyable but stressful job. Then, just maybe, your PMR will improve?
Your job must have been fun ! I will be relieved and really hoping my energy levels will improve, normally when I am not working I am able to do more "normal " things
I went down with a bug on Christmas Eve. Leastways it may have been a bug but I was aching with a temperature. Then ended up with stomach flu. However, my symptoms of achy thighs and hips and the feeling of heaviness that goes with them returned in full force. that, and tiredness, insomnia and worst of all my irritability with the slightest thing. The biggest problem was eating. I entirely went off food again. Having had a stomach flu I needed to eat when taking the Pred. I’ve been reducing by 1MG every 2/3 weeks and was now at 2MG a day. I decided to put off going back to work for a week and have upped from 2MG to 4mg Pred. It’s now three days since that decision and I’m starting to feel the benefits. I’m unwilling to go much higher as I know it will take longer to get off but have become more aware of encroaching symptoms. When I reduced before found symptoms coming back have usually taken a couple of paracetamol a day and it sorted it out. This time it wasn’t having any effect which is why I upped the Pred. I’m also on 10 MG amitriptyline. I think I’m going to start taking 20 MG as I’m not sleeping through the night. I think sleep is one of the most important factors to recovery.
You can add 5mg to the point where you flared for up to 10-14 days and still drop back to the previous good dose without a long taper.
I take 20 mgs Amytryptiline for sleeping & it does help. I agree that we heal when we sleep so a good night's rest is very important.
Leaning from the experience and education here, once I tapered to 2mg/day it took about 10 months with some OTC supplements before the "awful" fatigue began to abate.. The lesson for me was to honor, appreciate and recognise my personal physiology. This includes " Spirit , Mind and Body", all of which influence cortisol...
Thanks so much for your wise response! Recognising that we are more than just a physical body is SO important. Even so as I'm still on 8 mgs it looks an awful long haul..............
Anyone else heard of Hyaluronic Acid.
I am going the wrong way but know it's right!(I think)
Fatigue and PMR 
