Opposite effect from Prednisone

[Darcy2000]

Interesting that so many mention brain fog and fatigue while on Prednisone.I have PMR and currently am taking 15 mg.I do not experience either of those symptoms in fact my energy level which has always been high due to daily cardiovascular activity is still very good.I am wondering if 40 years of daily exercise has helped me avoid the fatigue...brain fog is not there either so not sure how that connects.

[Hidden]

I wouldn't think that's the reason....some people managed to negotiate pmr without fatigue but then it may hit them at lower doses. Others have also been active for years but still suffer fatigue. I was a keen cyclist for 30years and played squash, did gym work and swam. I hiked etc too. I was just thinking about skinnyjonny too. Active fire officer.... Pain fatigue and wheelchair with pmr... Remission... Now climbing a mountain for pmrgca awareness. I think pmr has a list of possible symptoms but we don't all get all of them. 🏃‍♀️🏃‍♀️🏃‍♀️🏃‍♀️🏃‍♀️🧘‍♀️

[HeronNS]

I had no fatigue either before treatment or in the first few months. Fatigue hit me very suddenly as I tapered to 7 mg, so I believe it must be due more to pred side effect of adrenal suppression than PMR itself.

[Hidden in reply to HeronNS]

I was fatigued for 2 to 3 months before dx. It seemed worse than my usual fatigue. That's why I went to the dr. She had no interest in fatigue until I said my shoulders and arms were painful too. I do thing 7mg is another fatigue blip for some but pmr causes it too.

[HeronNS in reply to Hidden]

I know a lot of people say it does, but I am merely backing up Darcy2000's claim that fatigue wasn't an issue for them. Not everyone has the fatigue.

[Hidden in reply to HeronNS]

I was thinking of you as someone who hadn't had fatigue until on a lower dose.

[HeronNS in reply to Hidden]

Right, so it wasn't PMR, it was pred side effect. And now that I think about it more, it was at 7 when I experienced a sort of undirected panicky feeling, not really until I was at about 4 that "deathly fatigue" became an issue.

[DorsetLady PMRGCAuk volunteer]

Wouldn’t know that’s it’s connected for reasons already quoted, but just be thankful you haven’t got them.

Some people do get through PMR a lot easier than others - so maybe you’re just one of those, long may it continue!

I had fatigue before GCA diagnosed - but it was 18 months, so significant restriction to arteries, but none after treatment until I got to around 6mg - and then due to adrenals (I think). Brain Fog/Pred head - whatever you want to call it on very high doses.

[SnazzyD]

I think you’re just lucky. I have been active all my life. On the Friday before diagnosis on the Sunday aged 54, I had cycled 6 miles to work and back, been on my feet all day. I went to the gym weekly, played badminton and did heavy garden work in my spare time, walked the dogs daily and my holidays were spent hiking in the fells with a pack. By Sunday evening after 60mg of Pred I was a limp, jittery heap on the sofa unable to think. I’ve not been able to regain the muscle lost yet after 2.5 years. I have lost the fog mostly but that didn’t lift until under 3mg. I think you’ll find that many people here were very active before too and some keep up exercise and some can’t.

[Bignorhill]

I have kept active despite the pains in my hips and shoulders. I do Orienteering and in one year I have run 950km in competitive events. I am not as fast as I was because I cannot lift my legs very high.

I was just determined to keep going. Certainly never had any Brain fog and now down to 4mg a day.

[SheffieldJane]

I feel sure that it will be a factor in helping you to combat some of the ill effects of treatment. However, I keep discovering that illness does not discriminate.

[HeronNS]

Re brain fog. Don't know if pred had an effect. I tend to be a scatterbrained, head in the clouds individual anyway. But I did use being on pred to get out of jury duty. Also I started to be able to win against my son at Scrabble again as my pred dose came down....

[Marilyn1959 in reply to HeronNS]

Thanks for the tip! Anything to get out of jury service. Did it once and was only in court for one morning out of 14 days. Complete waste of time and had high level anxiety during the one morning due to the huge responsibility of it. I was surprised since I was a Primary School Headteacher at the time and had never been bothered by responsibility in my life previously! Will definitely use the pred pass if called again!

[Smokygirl]

Interesting! I’m fine and clear headed when I wake up and so walk my mile, cook the evening meal and do my housework before breakfast and 12,5 Pred.

One and a half hours later I am a quivering mess of anxiousness with Pred head & terrible fatigue. This lasts until I go and sleep it off for an hour. After about five hours I start to feel normal again. Crazy Pred!

[PMRpro Ambassador in reply to Smokygirl]

Have you tried taking it before bed? That has worked for a few people who had similar adverse effects due to pred.

[Smokygirl in reply to PMRpro]

Thanks PRO. Yes, I want to try that.

Do I take the whole lot before bed? That would be at about 11:pm?

Or split the dose?

Or split the dose only for the first time so that I don’t have a day without Pred?

I might wait a few more weeks until I have a quiet few days and no bridge in the evenings! I don’t want to rock that boat! xx

[PMRpro Ambassador in reply to Smokygirl]

If it were me I'd take my normal am dose and then the next one that night, some 16 hours later instead of 24 hours. And enjoy a extra-good day

[Smokygirl in reply to PMRpro]

🤪🤪🤪

[HeronNS in reply to Smokygirl]

I'd be a quivering mess if I did all those things before breakfast!

[Smokygirl in reply to HeronNS]

🤣🤣🤣 Each to his own! Oh, dear Heron, I wanted to ask you ——-I want to buy a weighted jacket to improve my bone density when I do my morning mile ( Dexa results just come through, osteopaenic everywhere except left hip/femur which is osteoporotic)

Problem is that I have an old prolapsed disc which occasionally pops out, had it for many many years from mucking out stables and riding on a rigid tree saddle. In your opinion, could the extra weight of the jacket cause me problems with the disc?

[HeronNS in reply to Smokygirl]

I would check with an appropriate professional. However the brand of vest I have allows you to add weights which are just over 2 oz each (7 weights is 1 lb) so if you do get such a vest that is the kind to use. It is expensive and not as stylish as some of the others, but you'll only have to buy it once in your life, and it will allow you to increase weights very very slowly. The other vests I think usually have no weights smaller than 1/4 lb, and often more.

hyperwear.com/blog/weighted...

[HeronNS in reply to Smokygirl]

Oh and the other thing is, do you do exercises to keep your core muscles and the muscles which support the spine strong?

[Smokygirl in reply to HeronNS]

Wow Heron that is expensive!! - I’ll do some research & see if I can find something similar but a bit cheaper!

I have been putting a bag of old 2p coins weighing 2.5 lbs in my backpack and wearing that for my walk but sometimes my back twinges afterwards, so I don’t do it every day.

As for the exercises for my core—— the answer is occasionally! So much to do —- so little time to do it! And a couple of times over the years I’ve knocked my back out doing them too assiduously!

Can’t do anything with a twisting motion so I do the one where you lie on the floor , hands behind your head, pull your tummy in and raise your top half a few inches off the floor and back down again. That’s about it. And not very regularly!!!

[HeronNS in reply to Smokygirl]

The benefit of a vest is the weights are distributed around the entire torso, so you don't get the same strain on the back as you do with a backpack. My hypervest now weighs 8 lb, and I have trouble getting it off and onto its hanger, but find it very comfortable to wear. Personally I think it is worth the money. It is durable and completely adjustable. The small weights make it ideal for people with back problems including osteoporosis, arthritis or injuries. I don't ever expect to have to replace mine. (No, I'm not in the pay of the company!)

[Smokygirl in reply to HeronNS]

Thanks Heron. I really appreciate your comments and info. I’ll have to start saving up! xxxx

[HeronNS in reply to Smokygirl]

Exercises: over the years I've received many exercises from physiotherapists for my back. None of them involve any form of sit-up.

[Smokygirl in reply to HeronNS]

Well I can’t do planks and leg extensions — they irritate the disc but I also do mid body raises when I’m on the floor. I’m safest on my back 😜

[HeronNS in reply to Smokygirl]

I don't know what any of my exercises are called. They have been given to me by several different physiotherapists over a period of perhaps twenty years! One consists of lying on back, knees bent, tightening core muscles (Kegal) and lifting knees alternately three sets of sixty., rest hands on stomach. After a while one can straighten the leg with each lift, returning to bent position before lowering foot again. Another is to straighten legs, pull one knee towards chest, placing hands behind knee so as not to stress the knee joint, three times each side, count of 15 seconds each. Then pulling both knees towards chest three times, can press on outside of knees for that one. I more recently have been given one to lie on stomach and alternately raise each (straight) leg, worked up to sixty times. And another new one, which you probably shouldn't do, involves lying on back and doing a gentle twist with the assistance of arms. I can only do that a few times. An older exercise, and again it might not be good for you, is to be on all fours and raise and straighten legs alternately, again sixty times, raising and straightening alternate arm simultaneously. I also do a kind of "child's pose" but go back and forth fairly continuously rather than holding the pose, ten times.

[HeronNS in reply to HeronNS]

I guess it's improtant to stress that these exercises are all prescribed to me to target specific issues, mostly caused by osteoarthritis.

[PMRpro Ambassador in reply to Smokygirl]

Any option for Pilates? It was a lifesaver for me with untreated PMR. And when I read your post my immediate thought was that your weight is all in one postion, One of the advantages of being cuddly is that the extra weight which protects us against loss of bone density is all over!

Maybe you could get a cheaper one and use your tupennies spread through the pockets all over it?

[Smokygirl in reply to PMRpro]

Sadly no. Tried Pilates and most of the movements irritated my lower back. I find leg extensions or raises are no good for me either standing or on the floor including the last one Heron mentions on all fours doing alternate leg extensions. I do one on all fours sucking my tum in and then humping my back up and then concaving it—- that is good!

Good idea about spreading the coins around—- actually I could make pockets and sew them on to an old T shirt and put the coins in those!!

It would be a lot cheaper than £150 😜😜😜

[PMRpro Ambassador in reply to Smokygirl]

That makes me wonder if you dived into the deeper end instead of walking down the steps! You can't do the heavy stuff at the beginning and a good Pilates instructor will adapt everything to minimise the effect on the bad bits until they are ready.

Careful with a t-shirt - you need non-stretchy material.

[jinasc]

Are you male or female - I did look at your profile...............but it just says 'I'm Darcy' and you joined March 2019.

[Darcy2000 in reply to jinasc]

Female Canada

[jinasc in reply to Darcy2000]

Thanks, if you had been male, then I would have said - you have a fair chance of 18 months to two years.

Can I respectfully ask you to add 'Darcy2000' Canada. It does help as it lets us know you are not in the UK and are dealing with a different health service.

Keep posting, it will be lovely to see if you do make it into remission within what your (to me anyway) is a Medic who has not even read right through the PMR & GCA papers, produced by an international set of research medics.

Listen to your body, it tells you how you are doing...........it is hard at first, but you will learn to listen to it. It is unique to you, even though we have many things in common.

[Darcy2000 in reply to jinasc]

👍thanks for informative post

[HeronNS in reply to Darcy2000]

In addition to what jinasc says, I too had a relatively easy experience for the first year or so. It did get more difficult after that as I believe pred weakened me in many ways and although PMR symptoms continued to be controlled I think PMR was also having a subtle effect on me. I'm definitely not the same person I was before diagnosis and treatment, but neither am I the same person I was when I was on 15 mg pred, or even 8 mg. I've been on pred for nearly 4.5 years now and I'd say that years 3-4 have been the hardest, although in the last few months I feel I've finally turned an important corner. Btw, past the halfway point in a very slow taper to 1 mg.

[PMRpro Ambassador]

I had brain fog with PMR - but have never had it with pred, that sorted it out very speedily! And at the time I was at the gym almost daily ...