Hi All, I have been suffering with PMR for about 2 1/2 years now - and think I can almost see the light at the end of the tunnel, having stabilised on 1.5 mg of Prednisolone.
I have little pain - just minimal aches in my arms which most of the time I don’t even notice.
All well and good, but I have suffered, and continue to suffer with crippling fatigue. It’s almost as if I am given half an egg cup of energy to last me through each day, and when it’s gone, it’s gone! So, every day I need to nap - today I had to sleep twice - despite 9 hours sleep last night - and it’s not even as if I have done any exercise as I haven’t the energy to even think about it on top of getting through each day. I force myself to do things as I feel I am leading a half life - even my 93 year old neighbour has buckets more energy than me! I am feeling very low about it all.
BUT back in November last year, I had to take a course of antibiotics for a gum infection. On day 3 of the five day course, I suddenly had a energy. Not just a little but, but back to my old self. It made me feel euphoric. This lasted for a couple of weeks and I was doing all the things I used to do, with energy to spare! It still continued for about a month on a sliding scale back to where I am, and have been ever since.
I went to see my GP - armed with this information, thinking that perhaps the fatigue is nothing to do with the PMR and that maybe I had a low grade infection somewhere. He was as unhelpful as he could possibly have been and chucked me out after the allotted 10 minutes as I had had my time. Nothing resolved. I almost cried 😢.
I also suffer with Crohns which makes it more difficult to look at my inflammatory markers and know what is causing what!
I was just wondering if anyone else has had this happen to them and whether anything was done to try and get to the bottom of it. Or is it simply that the antibiotics are anti inflammatory and that was why I regained my energy? Any ideas would be welcomed.
I look forward to hearing from you.
All the best,
Sally
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Songbird69
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I think I would be looking for a more empathetic GP!
I have a friend who apparently had PMR but didn't get on with pred. Her husband (a scientist) persuaded their local doctors to try antibiotics - which worked very well for her. I don't know more than that though. I have heard others who said that they felt much better while on antibiotics - no-one knows why.
But what you DO need is a synacthen test to be sure your adrenal glands are capable to working as they should - not that that means they are but it is a start.
Get a referral to a Rheumatologist. Most GP's seem to know very little about PMR. Awful you have Chrohns to cope with too. Did the Pred help to dampen down that?
I would want some detailed info as to WHY he thinks it can't be your adrenal function - a recent study in Leeds has suggested that about half of patients have difficulty regaining good adrenal function post long-term steroid treatment which is rather higher than has been suggested in the past. It doesn't mean it is a permanent problem, just that it takes much longer to recover in some patients.
Sounds very like your adrenal glands, I have been going through the same problem. When I suggested this to my GP you would not have even known he was listening, he just grunted.
If the adrenals are not capable of eventually producing cortisol as they should then one does have to carry on on a small amount of steroids for life. The chronic fatigue is awful, I am not sure I do cope that well with it.
Morning! One is at the same level as you, and the other suffered with PMR for 8 years and didn’t have this issue. Unfortunately, three years on, she has been diagnosed again and now tapering from 8mg.
Have you been to the Dentist about your gum infection or just the Doctor.
I have had this bizarre feeling on antibiotics a few times over the years and as it happened it was when I had a gum infection or ulcers. Getting a hold of the infection helped reduce my Fatigue from being run down , but it did turn out that I still had a little infection and inflammation left in my gum which the Dentist was able to see with an x-ray.
The GP isn't always the best first stop to go to with oral infections , my dentist always seems more understanding of the potential of lasting infections or a need for a different antibiotic .
It will also have a lot to do with your Adrenal Function at lower doses and its affect on your energy levels in general , with an infection anything that helps reduce its effects will help you feel a bit better.
I went to the dentist and they prescribed the antibiotics.
The effect from the antibiotics was profound - not just because my gum was better. I was on energy overload - dashing around - doing all sorts - and with energy to
spare. It was wonderful. Could the antibiotics have kicked my adrenals into action temporarily I wonder? That doesn’t seem to make sense, but I just want all that energy back and feel normal again.
The could be various reasons for the extra energy and feeling of normality , unfortunately , during the Adrenal Phase of any illness Fatigue can return as easily as it lifts , you need to Pace yourself even more than before , on days when you have more energy as well . A lot of people find this time the hardest with their illness because Fatigue can affect both Mentally and Physically and it's hard to keep your Patience.
You should definitely get your Synacthen Test done to check if normal adrenal function is back but even if it is Normal it can still be a little stuttered in its reaction to your needs until your body slowly recovers too.
Thank you. That is very helpful. I must admit I don’t understand the mechanics of the adrenal function, and my theory was that now I am down to 1.5mg of pred that I must have some adrenal function to be able to survive day to day. Obviously that is not necessarily the case. It’s all so
You probably do - but recently there was a paper from top endocrinologists in London (I think) saying that 3 or even 2mg is probably enough to support normal daily functioning, rather than the 7-8mg that has been quoted for years.
One lady on the forum felt great at 2mg and made the same assumption but when tested it was discovered that she had no reserve function at all and required a higher dose for safety plus access to the emergency kit in case of severe stress and a potential adrenal crisis.
It is being aware of the potential problem, the signs and what to do that is important.
I have noticed this in the past when taking antibiotics for various infections.I assumed it was something to do with antibiotic effect on gut flora,was always advised to eat some yogort.No science here but just imagined that the garden of bowels was challenged in some way by the antibiotic and responded in force,and this somehow affected my well-being.This took place some years ago before recent advances in gut flora health etc.Also, perhaps antibiotics were being effective..body ,already in defence mode due to insult of an infection has a "yippee" time! Just imagining !!
I had terrible fatigue felt like l was wading through mud each day, l also kept pushing on thinking l need to live some kind of life. I live on my own and at xmas there was the holidays which l hate because there is nothing to do. This year l decided l would just have to learn to relax and not do much of anything. Shorty after the holidays l noticed a miracle had happened l was no longer fatigued the feeling of walking through mud has gone. I still push myself to do the things l enjoy but l have learned to slow down as well. I still get tired but l can live with that. I always thought that pushing myself all the time was the way to go but it may not be.
I too live on my own - which is really why I push myself to do things as there is only so much talking to yourself that you can do!
Interesting that a short break seemed to have sorted out your fatigue. I have been doing not a lot other than essential stuff for almost 2 weeks, but feel no differently.
On a brighter note, I saw a different GP this morning and he has referred me to an endocrinologist. At last! Yay! Waiting times are long but at least I am now in the queue!
My neighbour is a lifetime Crohns sufferer. One of his main problems is fatigue. Like you he sleeps all night but still needs a nap or two during the day time. I think the fatigue is present in most autoimmune conditions. Unfortunately you have a double whammy of PMR +Crohns. I think you need to be gentle on yourself and listen to your body. Oh and get rid of the unsympathetic doctor!
I have been on prednisolone since January 2019..for PMR.. Six months ago the rhumy wanted me to start reducing.. I started off at 10mg..for a month, reducing down by 1mg each month.. I was fine up to 3mg..statref getting some pain back, but nothing that I couldn't cope with... But now on my second week of 2mg..i have no energy.. Everything is an effort.. My legs feel like lead... Do I just plod on, and hope everything will settle down?
Seems like a few of us have had these symptoms when reducing...
If it were me I'd go back to 3mg if you were able to function well there, wait a few weeks and try 1/2mg drop. This is probably the hardest part - letting your adrenal function catch up. One top guy in the UK likes to keep his patients at 5mg for up to 9 months to let everything catch up and it seems to make the rest of the journey simpler.
You can drop from 3mg to 2.5 mg coated pred. The difficult part is when you drop from 2mg to 1.5mg. I was told to cut the enteric ones in half at that point. I suppose they are still partly coated - but difficult to cut equally. I have been having stomach problems with this method I regret to say.
Because of that, I will probably try to start reducing to 1 mg as soon as reasonably possible, but scared I will feel even more fatigued. Can’t win!!
Has your GP explained why he/she is reluctant to offer you the synacthen test? It seems such a sensible test for the stage you have reached. Once you know how your adrenals are functioning you can know what to do next - be patient if they are adapting and need more time to kick in fully, or discover that they’ve gone as far as they can and you are going to require a higher maintenance dose to stave off this level of fatigue that is impacting on your quality of life. Perhaps book an appointment and ask the question so that they have to explain their reasoning and give you a chance to explain theirs. If they are still unwilling you could ask to be referred to a rheumatologist or endocrinologist whichever they think most helpful. Be reasonable, unemotional and logical. Sometimes busy GPS just don’t have the time to think things through as we would like and we need to help them focus! And of course you can change doctors. Good luck and do tell us how you get on 🌺
It is difficult - you have to wait until the dose is at least below 5mg and anyway it doesn't show they are working normally , that is a very complex process depending on a lot of other factors, but it does show whether they are CAPABLE of working. Which is a good start - it is a bit late to discover they can't once you are totally off pred.
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PMR resurgence 
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Has anyone heard of Parsonage Turner Syndrome? Out of interest. 
