Does increasing pred dose reduce fatigue (exhaustion) for some people?

[Ozark]

I'm increasing my dose of pred for a week from 7.5mg to 8mg as an experiment just to see if it will provide any relief from the horrible exhaustion I've been experiencing as of late. I'm always nervous about increasing the dose (assuming this new dose gives me some relief and I maintain it) because of the long-term side effects. ​As of the 1st of January I'm celebrating my first anniversary of the contraction of PMR, happy me. So basically I have two questions: 1) Has anyone seeing this message experienced any benefit from an increase in pred in reducing their level of fatigue? I have seen a number of post to the contrary that the increase had no effect. Still, I wonder if anyone has seen *positive* results on fatigue from increased pred. 2) Does anyone have an opinion as to what the long-term (possibly years) side effects and probabilities thereof might be at the increased dose indicated of 8mg? I've tried to stay at the upper end of what is considered the "replacement" dose, 7.5mg, in order to avoid side effects. Thank you in advance for your reply.

[Bronni]

I have wondered the same thing. The fatigue thing really bothers me, but I have no pain on my maintenance dose, so I just deal with it and take a nap when necessary, rather than taking more pred. I guess it depends on how energetic you need to be. Personally I would only take more pred if you’re experiencing pain.

[Ozark in reply to Bronni]

I guess we are all subject to different levels of fatigue. In my particular case I feel it is extreme. I do take naps but they provide me with only short-term and minimal relief. As far as how energetic I need to be that is a matter of definition. I need to at least be able to maintain myself in the usual sense. I have to go out shopping, I have to prepare food, I have to do some cleaning, etcetera. There have been a few days where about all I've been able to do his lie on the couch and rest. So, my situation is such that I am willing to at least try an increase in my pred dose to see if that provides me with any relief. We are all different in our needs as we go through this trial of PMR.

[Bronni in reply to Ozark]

Oh, I’m sorry Ozark, that does sound extreme and must be very upsetting. I hope someone else will be able to give you better advice, because I have no idea if increasing the pred will work - but I can certainly understand your wanting to give it a try. Best of luck!

[Ozark in reply to Bronni]

Thank you for your response.

[DorsetLady PMRGCAuk volunteer]

At the level you are now I would say the fatigue you are experiencing could be caused by 3 things - the illness, the steroids and/or your own body nudging the Adrenal glands to start working again.

If it’s the illness, then a slightly higher dose may help, if it’s the steroids then a higher dose may make it worse, if it’s the Adrenal glands then it’s just a matter of time and reducing really slowly.

As you are only a year in, then I would hazard a guess you are not on enough Pred.

Plus you need to learn to pace yourself - yes you need to live, but you also need to rest.

As for long term effects of Pred, there are many on here who have been on steroids for a lot longer and/or at much higher doses and have come through relatively unscathed, including me. See below re side effects-

practicalpainmanagement.com...

You need the correct level of medication to control your inflammation- or there’s no point being on it!

[Ozark in reply to DorsetLady]

Thank you for your thoughtful reply and especially the link to the Practical Pain Management study. Very interesting. Makes me wonder why a study such as this was not performed years ago. Seems to me that such a side by side comparison is just common sense in order to determine the real incidence of pred induced side effects.

[SnazzyD]

Hello,

I found around 7mg to about 5mg really taxing until my adrenals started to work. I was sooo tired. I had thought, lower dose feel less Preddy. No, didn’t work like that. However, from my limited knowledge of PMR but reading posts hear, your PMR is still a Spring chicken, so it could be either. I also found 0.5mg still plenty to give me withdrawal too, so it was not a fun time. I kept reducing slowly and just did (even) less.

[PMRpro Ambassador]

As someone who has been on pred for 9 and a half years and has lost track of the accumulated dose but know it must be well north of 20g, I really doubt 1/2mg at this level is going to make much difference after only a year. I have no identifiable side effects from pred - I could do with losing some weight but that is a life-time story, I have slightly high cholesterol but the HDL contributes a lot to that, there is no sign of diabetes last time we checked and after over 7 years there was no significant change in my bone density.

At one point I had got down to 4mg and it was OK although I was better at 5mg. When I tried 3.5mg that was too low and I went back to 5mg. A few months later I had a flare and was back to 8mg.

When I'm talking of fatigue a nap doesn't help - that is different. With fatigue I can barely put one foot in front of the other - which just isn't practical whatever it is due to. The last time I got to that stage it was on 8mg pred with methotrexate - it was unbelievable and led to my refusal to continue with mtx.

[piglette]

I have fatigue at 5mg which is probably due to the adrenal glands, when I increased to 10mg from 5mg the other day the fatigue went away.

[Ozark in reply to piglette]

Thank you. This is encouraging. I'll just have to see if my increasing from 7.5mg to 8mg has any similar effect. I may go even higher to 8.5mg if I notice even the slightest positive result. I've passed this by my internist and she seems to be okay with this experiment. Have a happy Sunday wish from the other side of the pond in the USA, assuming you are British.

[piglette in reply to Ozark]

You could try going to 10mg for a week or so if you wanted to and you can drop back to 7mg without tapering.

[SheffieldJane]

1) No, nothing helps apart from regular naps.

2) I hadn’t thought of that. I take heart from the Eric Matthison paper however, posted by Gauguin. It’s study showed no adverse effects ( long term) from PMR doses of Prednisalone except for a slightly higher incidence of cataracts, perhaps explained by more regular eye examinations, ie compared to the general populace of the same age group.

[Daisychain12]

Hi Ozark. I have the devastating fatigue too but I have the weird umbrella diagnosis of

“ fibromyalgia “. A nap doesn’t fix it and it can last a few days.

I honestly think you have to try. No way round it really xxxx

[ann55carol]

Yes it certainly does for me. I am 72, and on 15mg prednisone. Whenever I try to decrease it my fatigue levels increase dramatically. I am okay in the mornings but by 1:30 need a nap, sometimes I have a bit more energy after but by supper and after am always tired. Although I live in Canada I am on the UK web site. Just found out about this from one of the admins there. She has suggested I try splitting my prednisone dose to 10 in the am and 5 in the pm. This was my first day to try this and I must admit I did feel better this evening. She stated that sometimes you use up, or the dose does not last all day, so you can be fatigued because of it. Fatigue however has been my worst symptom, the pain was not good, but I could manage it, the fatigue was unmanageable. As for the long term affects, I really try not to worry about them. I want to have some quality of life now not 5 years from now. I have had PMR for 2 1/2 years and it has been a struggle. I have just decided that I will deal with whatever problems it causes when it causes them. The one I have worried about the most is bone density but I do not have the risk factors for it so that is consoling. A coupe of the risk factors are if you are fair skinned and petite. Good luck, I know that i have found it hard to believe that by going up 1/2 mg. from 14 1/2 to 15 can increase my energy level so much..