I’m in year 4 of PMR and down to 4mg of Pred. I’ve always kept as fit as PMR would allow and have played golf occasionally during that time without much problem. Suddenly during my recent couple of rounds I’ve experienced a sudden loss of strength and energy two thirds of the way round such that I’ve had to quit at that point. It leaves me extremely fatigued and takes a few days to get over. Has anyone else had a similar experience? Is it a symptom of long term steroid use?
can anyone shed any light on this?
Written by
Wolfman99
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Hello, it could well be that your adrenal function hasn’t fully caught up with your reduction to 4mg. You might be fine one day but then on another when doing a little extra like a round of golf, your adrenal glands don’t put out enough cortisol which so far has been done in spades by Pred. Sometimes there no obvious rhyme or reason. Do have a read of all things adrenal from the FAQ’s and see if it chimes with you. It is one of those common but not really spoken about aspects of long term Pred. It gets better but the road can be a bit bumpy and uncertain, but knowledge helps.
Adrenal function wobbles!!!! It gets a lot of attention for people getting to doses below about 7-8mg which is felt to be the physiological level where the pred replaces the cortisol secretion by the adrenal glands it suppresses. Once you get to these lower levels the adrenal glands have to wake up and do their job again. They don't do it overnight and patience is required because the only thing that will do the job is a sufficiently low dose of pred to trigger the pituitary to request more and the adrenal glands to do it.
Thanks everyone…the tricky thing seems to be differentiating a flare from adrenal function wobbles. I felt really good in the spring on 4mg and tried to reduce to 3.5 but seemed to flare so have yo yo’d a bit on the pred. Also there is a school of thought that there is a seasonal effect on the body…animals experience hormonal change due to the season and so do we…I will stay patient and try to tough it out…
Winter isn't brilliant time to try to reduce. Yo-yoing almost always causes problems in the longer term. But being great at 4mg doesn't mean you will still feel great at 1/2mg less - it surprises a lot of people how much difference 1/2mg can make!
Yes, the wobbles caused by the Adrenals are likely to be affecting you.But don't forget that we can also have other problems or illnesses that can cause new or sudden symptoms.
We shouldn't put everything down to PMR or steroids when we get new problems without ruling out the chance that it could be caused by other things first, as we don't want to miss the warning signs of something which could be dealt with early on and that improves our success in tapering.
If you haven't had a recent check up I would recommend that you make a face to face appointment with your GP for the standard health examination of your heart and lungs, I would also suggest that you request them to do your basic blood tests if they have not been checked in the last six months.
Including full blood count, iron/ ferritin. Kidney function (electrolytes) , Vitamin B 12 , Folates and Vitamin D.
As certain other issues including salt imbalance and Deficiency can occur especially if you are taking long term steroids and PPIs which cause similar problems of Fatigue and Muscle Weakness.
You have the right to request these tests on the NHS especially when you are on certain medications like steroids.
Being at the lower end of the range of certain nutrients, not just a deficiency, can increase the symptoms we feel during the Adrenal Phase of tapering .It's worth getting a copy of your results and adjusting your diet or taking a supplement after having the tests done if you have lower ' normal' results to help improve your symptoms.
Good to hear , but if you haven't received an appointment time yet it would be worth chasing it up to confirm one , explaining that you have been suffering from these recently. Take it easy in the mean time , Bee
Typical of adrenal insufficiency as others have said. A whole new phase of the PMR journey as I have also found. Expect up and down energy levels and those sudden lapses. But I take it as good news because it means that my adrenal glands are at least somehow involved in my life!
I also have been dipping occasionally into 3.5mg from 4mg so it seems to be a common place for this to happen. In the last few days I have been taking magnesium which I haven't for a while as I ran out of tablets and that seems to have helped my leg muscles noticeably.
I also have trouble distinguishing flares, PMR activity and Adrenal Insufficiency (AI) so a pretty much keeping pred stable for now and treating it as AI , though I think I will need to reduce a bit more to provoke the old adrenals into working properly to get enough cortisol in the system
Agree with the others that it is likely due to the adrenals struggling. Long term use of exogenous cortisol can completely shut down the adrenals as you know. Remember too that the adrenals also make many other hormones that are likely turned off in your case. In addition to low cortisol, low pregnenolone and low DHEA will make you feel weak and tired. Hope you feel better Wolfman.
I started my PMR journey almost 7 years ago at age 61. It's been a trip complicated by continuing my full time job in the construction industry. I have needed to constantly pay attention to how much physical work I could do based on the current effective prednisone dose. Do to much physical work and I risked a flare up. At the same time, not doing enough physical work/exercise caused my muscles to "waste" much more quickly than one would expect. For myself, throughout these years it seems that I have only so much energy to give before the tank runs empty. Push beyond that and I risk the PMR flaring up. While I am still physically "in shape", it's not at the level I would like and much of that can be attributed to having to behave and not push myself beyond what the prednisone dose and PMR would allow. It's not so much about what I want to do but rather what PMR and prednisone will allow me to do - without suffering the consequences of trying to do too much.
After all this time I am now down to a solid dose of 1 mg and am in no rush to reduce further - if ever. My physical condition and strength is a shadow of what it was 7 years ago but I'm also 7 years older! I can't blame it all on PMR. I'm thankful that by paying very close attention to my work, rest, eating habits, etc that I have been able to continue working although I'm doing much less physically because of it. It's okay though - Superman left 7 years ago and I've found satisfaction in maintaining an effective prednisone dosage for the most part and enjoying the life that it will allow, with its restrictions. The adrenals have come back to life for the most part but that doesn't mean I have carte blanche to do whatever I want. I'm allowed to do whatever PMR and prednisone will allow. Ignore that and pay the price. Best wishes to you and your journey through this PMR wasteland.
Hello Raven 1955.I note that you are working in the construction industry and have continued to do so while on your PMR 'journey '. Apart from the well known undesirable effects steroids have on our bodies, i am wondering if you have had, or think you may suffered any damage to ligaments or tendons, particularly around the shoulders.In my case, i am working also, as a cleaner, and have been on the PMR journey for about 28months, tapering to 5mg Pred. now, but with a current flare having to increase to 10mg to ' arrest ' the returned symptoms.I have seen references to tendon and ligament damage due to steroids, and in your case wondered if you had encountered this damage, especially as you are working physically hard, also.I am the ' custodian ' of a 76yr old body and know at this age one has to expect a few ' squeaks ' in the armour, to be realistic. Your comments regarding tissue damage, that you may have sustained would be greatly appreciated.
In my first year of PMR, while trying to reduce my prednisone far to fast (per my GP's instructions), I had a massive flare up. I tried to work my way through it and somewhere along the line I tore a tendon in my right shoulder. I barely avoided surgery although it was recommended to patch the tendon tear. I can't honestly say whether to blame it on my condition or not. Over time I realized that I was losing muscle mass and would have small tears and muscle sprains. I would cut back my level of physical work to avoid those issues but also found myself becoming "out of shape" quite rapidly. I can still do most of the physical work but have to be more careful, not push myself beyond my limits when I wear down and work smarter instead of trying to muscle things through brute force. It's been a gradual downward spiral for me - just couldn't keep myself in shape as what I call muscle wasting seems to continue no matter how I try to stay in shape. The sprains are particularly annoying when they happen from stretching out a bit too far or trying to turn and lift a moderate weight at the same time. I'd then have to be very careful for a while during which I healed but also lost more muscle and muscle tone. As I said, I can do most things but in shorter duration and more carefully and slowly. Seems like everything takes 3 times as long. I have read of a number of people who have managed to keep in shape throughout their PMR journey but most of those seemed to refer to biking, hiking, workouts and such things. Hopefully you can continue your work but really pay attention to what your body is telling you and don't try to push through exhaustion or a flare up. I learned the hard way a couple times that's just a guarantee you'll end up in worse shape and on a higher dose of prednisone while trying to get back to the level you were at.
Thankyou Raven 1955 for your most generous and helpful reply.Your comments regarding tears and sprains are what i think i am experiencing, and i had not seen any references to these injuries in the posts of other members, so i am most grateful for this information.I have had noticeable muscle loss notwithstanding doing a physical job, as you are.At the moment i have some neck and shoulder pain, also near the elbows and it may not be tendon or ligament damage, maybe just pain from inflammation in this upper body area.I also have some pain in the backs of my legs which i remember from my initial symptoms when diagnosed with PMR. I have also suffered a lack of strength, which i note from your comments.To try to ' arrest ' my current pain i have increased my Pred. to 10mg. from 5mg. and will stay on that for a week or so.I noticed that advice was given to another member by PMR Pro .I am not sure if being on the higher dose will start to shut down the adrenals again, will need to find out.Regarding supporting connective tissues, tendons,ligaments and joints, i have started taking Hydrolysed Collagen Peptides which supposedly assist in reducing inflammation and pain, promote better joint health and mobility and also helps the skin.This nutrient apparently also supports cardiovascular health and healthy bones.Previously, i was travelling well, down to about 3mg., was very careful with diet, alcohol, caffein etc. but let the ' hand (park) brake' off, eating some baked items,wine etc. and the ' flares ' arrived, which was probably to be expected.A consultation with a rheumatologist some time ago resulted in advice to go onto Methotrexate as she considered it the ' lesser of the 2 evils ' but i have resisted that as the side effects including more regular blood tests, didn't seem very appealing, but maybe less injurious to the body.But from members comments, it seems people have been on low doses of Pred. for many years and our doctors are trying to get us off Pred. as soon as possible.Raven 1955, thanks again for your prompt reply and kind assistance,and i extend my best wishes to you from Australia.
As long as you are only at the higher dose for 10-14 days maximum it should not affect the adrenal function adversely. MTX may be "lesser of 2 evils" in her view - I would disagree having tried it - but the point is it doesn't work for a majority of patients! If it did work for PMR reliably they would use it - they don't. It works brilliantly for a small cohort of patients but by no means for all.
Thankyou PMR Pro for ' picking up ' on this and your further helpful comments.I had known previously that only a small number of patients derived benefit from MTX and thought the potential side effects seemed quite numerous, resulting in my reluctance to ' get on that bus '. While i was on a Pred. dose of < 5mg., i had a hernia op. , did not adjust my dosage and recently read information which i thought suggested an increase in dosage was required in a situation such as this.I have read the article by Dr. SarahMackie ' A Rheumatologist Explains ' which explains well the PMR ' journey', a pity doctors and many other Rheumatologists didn't have the same level of understanding, which we often confront at consultations.My understanding is that low level Pred. dosing is relatively safe,over an extended period, to ' keep a lid ' on inflammation,and the side effects not too difficult to live with.Over the years have many members reported injuries to tendons, ligaments etc. as on my short PMR journey i have not noticed many references to these side effects in posts ?
PMR Pro, i greatly appreciate the help you give me, also DL and other regular knowledgeable contributors and in a world where selfishness and lack of caring is often very apparent ,you show real ' humanity 'in giving your time and sharing your knowledge to assist us on this path to wellness, which is often very frustrating, as we all know.From Australia, i extend my best wishes for your happiness,always !
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