Hello everyone. I haven’t posted for a while and I hope you are all keeping as well as possible.
After doing well at 6mg and returning from a holiday in France, I reduced to 5.5mg of Pred on a DSNS taper. I have now been on 5.5mg for two weeks and feeling extremely tired and ravenously hungry. Because of extreme fatigue I asked GP for cortisol test which has come back at 34. (It should be at least 138 I believe). I am so glad that I asked for the test. It has come as a horrible shock and is extremely worrying. I have been referred to endriconology and been told to increase my Pred to 7.5mg immediately. My doctor will call me on Monday to see how I have been over the weekend. If I become unwell I should double my dose and go to A&E if an emergency. I had no idea I was so unwell. My ESR and CRP are also significantly raised compared to a couple of months ago.
Has anyone-else had a similar experience and what is the best way to look after myself?
Thank you in advance.
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Pangolin43
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To be fair - it is possibly partly due to the dose of pred still being above 5mg - it will suppress the production of cortisol. Most endocrinologists won't check until patients are below 5mg, preferably 3mg. The pred you are on is substituting for the lack of cortisol - no need to get into a panic yet.
However - if your ESR and CRP are raised - you are on too low a dose of pred and it isn't controlling the inflammation so you need more pred for that.
On the plus side I've been on pred since mid 2015, albeit several years of that time at around 2 mg. I had a flare in late 2020, and after many months at doses hovering around and often slightly above 5 I had a morning cortisol test. Doctor didn't give me number, but said it was exactly in the middle of the normal range. It was after close to 60 hours without pred. So even longterm pred does not inevitably lead to permanent cortisol suppression. In my early days I went through a stage at about 4 mg when I felt like I was walking through water. Kept on with my slow taper and appear to have survived ok! I did not have any cortisol test then, although I did complain of fatigue to my dr at the time. The tests she ran pointed only to low iron, which has been a chronic issue for me most of my adult life anyway and always easily sorted with temporary supplementation.
So yes, indeed, look after yourself and accept medical investigation when offered, but don't give up hope. I know there are others on here who have been tested, told they have adrenal insufficiency, but as time goes by they gradually recover. All the best.
I am sorry you’ve been panicked by this. It happened to me when I was on 5 mgs too. Proving more than anything that the Prednisalone was holding me up basically. I reduced slowly to 3 mgs and was tested again and my Adrenal function was completely normal. As a precaution I was sent a hydrocortisone injection kit, should an emergency arise.
I am hoping for a similar result because I was diagnosed with GCA shortly afterwards and was immediately put on 40 mgs of Pred. I was able to have Tocilizumab that reduced the steroid burden by enabling me to reduce to 10 mgs quite quickly. I am now on 6 mgs with an appointment to see the Endocrinologist when I get to 5 mgs. Hopefully, I will eventually recover the full function again, this time.
Try not to worry too much. I am afraid fatigue is part of this illness, irrespective of how the Adrenals are recovering. Familiarise yourself with the sick day rules on FAQs, you will need extra Pred if you catch any of the viruses going round currently. Good luck with your next test.
I have to agree about the fatigue and brain fog. In 1985 I had 3 viruses including EB and CMV which eventually became chronic fatigue syndrome. I was so exhausted..no one got it...they would think.sleepy. nope. The good thing was I had been working around the clock and had weeks of comp.hours on top of sick leave...and it was the end of the year so I took a month off. But it was so hard. Then Fibromyalgia came on board several years later, also causes fatigue...and of course all arthritis does have some as well.and pain makes you tired. BUT PMR IS THE KING AND QUEEN OF FATIGUE!!! at least for me. No one said anything about fatigue...it is the worst. My brain is fried....I have word disorder.and I just fall asleep throughout the day. Yes fatigue is part of the PMR package no extra charge. How do you know what's what fatigue wise...PMR versus adrenals. But I am glad you pointed this out. Thank you. Figuring all of this stuff out is like putting your head in a mixer, turning it on and trying to sort out which beater is going faster and has the most frosting on it.
hi...no I was referring to fatigue in general with PMR....I had no idea it could be as bad as I have experienced but maybe that is because of all of this other stuff. SheffieldJane said it well.
Oh yes - fatigue with PMR alone can be massive too. Especially if you try to do too much - even on pred the actual disease process is still going on, the pred has no effect on that, and it is as if you have constant and long lasting flu because the disease process is attacking the body. There are lots of different SORTS of fatigue too and you can suffer more than one at a time. There is an article about that linked in this post:
I am sorry to hear your story, it must be so difficult. I have trained myself to have a regular nap after lunch, it is always 90 minutes for some reason. It has enabled me to get the most out of my days. Audio books help me to let go.
when I first got sick and was at work I would hide away for about 20 mins twice a day and then napped for lunch. You know so many years have passed by living with this stuff that you learn your body and what to do...meds to take etc. Although here in the states getting pain meds is another insane thing, many pain patients ara undermedicated and nothing can be done. It's hard to not get the right treatment for pain. But again you figure out how to function. So when PMR hit I was so stressed I had no clue and focused on the med schedule. I think I might be getting some of it. But that is thanks to you all. I have a lot more to learn and figure out.
Thank you SJ. That’s really helpful. I’m always reassured by others experiences on this site as a I realise I am not alone and is often part of the course with PMR. I’m going to take 7.5mg as advised and then hopefully begin a slow reduction again when I’m feeling better. 😀
Once your inflammation markers, and any PMR symptoms you may have (other than the fatigue of course) have gone it will be time to gently nudge the adrenals again with a slow, slow taper. Good luck!
One thing that wasn’t explained when I started pred was that tapering down from 7mg was going to involve adrenal insufficiency and steroid withdrawal syndrome. This combined with the return of OA pain in my knees is honestly is causing some fear and anxiety as I am currently tapering around that level. I know getting off of pred altogether is the goal and reward (as is finding the lowest dose to control our symptoms), but getting off pred altogether seems pretty daunting. Needless to say I’ve squeezed in lots of travel, fun and relaxation this past summer, but scheduled nothing this winter.
I also began to have sore knees too which I thought may be arthritis. I’m waiting for the results of an X-ray. I find it so difficult to work out what is PMR, ageing, steroid withdrawal and adrenal glands 🙁
I wish I could tell you something useful but I still have my training wheels on. So I will keep you in my thoughts. Please do your best to care for yourself...if someone is not around I would try to get someone to visit. I hope your doc has answers and options for you.
thanks PMRpro. Appreciate that. Sometimes I feel like I should get an honorary degree for multiple autoimmune disease management. Then PMR came into my life...back to building the plane while flying it. Thank you for all of your support.
well that's a lot for my PMR'd brain. So first there have been so many tries at what causes CFIDS. What happened is quite suddenly I got really sick. Fatigue, a scary brain fog, shakes, gastrointestinal issues though I was always hungry not normal for me, light sensitivity, night sweats, low grade fevers. It was completely debilitating. My PC ran tests and said CMV, EB and the other. What began was years of blood tests, antibiotics (shots), and eventually weekly gamma globulin shots. To be honest I don't know that anything helped...but after months of missing a lot of work I settled in to living with it. I actually got involved in lobbying on the Hill for CFIDS patients. I was involved in the AIDS community so a friend asked me to tell my story. It was hard to have a disease that some said was in your head. Anyway we monitored levels and other viruses...I did have HHV6 which was mentioned in the article you sent. I had to stop getting the shots when the war started...could not get any. Then I developed body pain that stopped me in my tracks. It took years to get a diagnosis...but finally I was diagnosed with fibromyalgia. I also found out I had Hashimotos. Synthroid and Ultram kept me working. Again a new norm. Had a major pain flare last night actually. And as with CFIDS the autonomic system is involved. Early in the 90's I had been diagnosed with Sjogrens. I had a lot of issues with the sicca symptoms. I was put on placquenil to manage it and had to see eye doc every months because it can cause eye issues. I was never on prednisone before 2015 when I developed Sjogrens RA. We tried methotrexate but I got two infections within the first.week and had issues with breathing one of the side effects. So we doubled the placquenil.and added 3 mgs. of pred. That worked and I am grateful. Add in severe osteoarthritis in my knees, hands, hips and carpal tunnel that requires braces at night and that's my mix. I will say that one thing was always in the back of my mind...when I younger pre-CFIDS by years...I got a really bad cold/flu. I remember being a bit scared because it hung on and on. I remember buying vitamins (we never took vitamins.so...) I felt desperate. It eventually resolved but it kept coming to mind during my years of EBV management. What was it and could it have been EBV then or some other virus. and part of the puzzle.
I have no idea if this is the info you wanted. Actually when my PMR symptoms started I thought about getting an EB test...but as things developed and my hands got worse I thought RA flare. Nope, PMR.
Uveitis sounds scary as hell. I cannot even imagine being on 100 mg of pred...I would be afraid my head would explode. But to keep my sight I would take double that.
Anyway..sorry so long but I wanted you to see how things kind of rolled into each other.
hi there. Had to take the pooch to the vet yesterday. It was good to get out of the house, fall is on it's way in and yesterday was beautiful. But back in the day it didn't require a day to deal with a vet visit. Oh well....right? At least it was all good news. Expensive but good. And I love my new vet...funny and thorough. We did talk about PMR and pred. He said if pred is the only thing that works you have to take it...and told me about this professor who used to.say if you have to "pred until thy're dead"...as you have said the docs all have their own opinions. If it is the only thing...I want to take it with the hope of getting functional again. If the adrenals tank you continue to take pred...right? I know there are other risks.....
On the Sjogrens RA...right now my hands are swollen and cranky...so what I need are the RA marker tests. I can't get in to see my rheumy until end of next month. The 3 mg. of pred worked with the placquenil to keep things under control. I kind of feel lucky because my RA has only flared once. I thought this was my 2nd...but it is PMR so...I wonder if the PMR can trigger a flare.
So I might have found my first good dose as a renewed starting point 21 mgs. I have symptoms but very reduced. Not sure how long to stay on this dose but for now....you said you were able to reduce quickly...what did you use as a guide? I need to figure this out to be successful at managing it. Just like all the other things I have.
Biologics worry me because of my experience with methotrexate. My gut says no.....but I might have no choice.
I understand how you feel about the pred that is how I feel about my pain meds. I was lucky because my rheumy would give me my meds. But finally he had to send me to a pain doc. It was awful. I was in a really good place and my first and 2nd pain docs destroyed all of that. They undermedicated me to the point where I was so sick. I felt traumatized by the experience. Finally I found a doc who had no opinion except tell me the facts about your pain. She gave me close to the dose of meds I had been on and finally the full amount (well below the new MME limits). When I moved I was so stressed but found a great.doc. he even said considering how long I have used these meds ...since 90's...I am on a low dose. I don't have meds for break through pain...but nothing to be done.
Which biologics have you tried? And if I read rightnthat is what stopped your PMR flares? Or are they still happening? I know you ate dealing with arthritis...OA or RA or a mix? What do you take for pain? I know they prefer no NSAIDS when on pred but I take 800 mg of motrin 2 x day. I think it has helped a smidge with PMR but it might be the arthritis increase....not actual PMR. 🤔
Too much to think about. Time for more coffee. I offeted my pooch $10,000 if he would make coffee this morning and he just turned around and walked away mumbling to himself. I thought it was a reasonable offer.....
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