PMR / Prednisone - Fatigue

One top PMR rheumy likes to keep his patients at 5mg for up to 9 months to let the adrenal glands catch up - and finds the rest of the reduction is simpler as a result. These are low doses with minimal side effects. Ones I have yet to reach but I have lost all the pred weight (at between 10 and 15mg but not without hard work i have to say) and have no side effects besides!

My rheumatologist did tell me to park my dose at 5 mg, but after a month I snuck down to 4 mg.  I'll find out tomorrow if I'm still safe.  🤞 Fingers crossed! I'm finally beginning to lose a few of my 20 pound weight gain.  Yay!

Don't be confused though - at this stage it is less the PMR flaring that is a concern than the potential of adrenal insufficiency which can make you very ill. If for any reason you were subject to intense stress due to trauma, infection or even emotional/psychological stress you could suffer and adrenal crisis - which, if not quickly identified and treated, can be very serious.

Provided you don't start feeling worse, stick with the 4 mg (as long as PMR niggles if any are inconsequential).  What you do need to do, however, is rest a lot.  More than you might think necessary.  I've been below 5 for approximately a year now, and a few weeks ago I had an interesting, slightly busy day, but part of the time was spent in a pleasant social setting.  I was so exhausted when I go home I could barely move.  I kept falling asleep the following day!  What I think must have happened is that I have enough cortisol, both my own and pred, to cover an uneventful day, but when I needed more (and I wasn't aware of being particularly stressed but I must have been) the adrenals were not able to supply enough.  

Interesting concept.  That's exactly what my rheumatologist said this week.  Thankfully all my numbers were very good.  He advised me to stay on 4 mg until I see him again in three months.  I can handle that.  MUCH better than 60 mg!!!!! 

I think there is some contraindication for melatonin with pred because melatonin can stimulate the immune system.  

This is an old thread, however, so I don't know if Daniel will see your comments.

The active substance in Benadryl is different in various countries so may not have the sedative effect everywhere.

If you have been on 20mg of pred for 2 months it is high time you started to slowly reduce the dose - and as the dose reduces the insomnia will also improve.

EileenH, yes, I agree, it’s time to reduce my 20mg pred.  Going for blood wk Mon. & hope my nos. are good.  I hate the wt. gain of 22 lbs. & want it off!'

The blood work will only show that the pred is doing its job - as long as you are taking enough pred they will remain low. It doesn't mean the PMR has gone away though - so don't let your rheumy try to rush you off pred by reducing too fast. YOu have to go slowish to identify the dose you are looking for.

In the meantime try cutting your carb intake drastically. I lost 35 lbs while still on pred and so have a lot of others. Pred changes the way your body processes carbs, causing random high spikes of blood sugar which, in turn, trigger release of insulin. The insluin makes the surplus blood sugar into fat and stores it for later. By cutting carbs the body has to use the fat stores to produce energy instead fo using glucose. It does work - and it also reduces the risk of you developing steroid-induced diabetes.

Hi Linda, I gained 20 lbs on Prednisone, still on it, but with watching what I eat I have lost 23 lbs so now weight 3 lbs less than when I started. That is over the a year time, watch those carbs, how good is that DONUT! I am just saying that; how good is what ever it is that you are eating that is helping to gain weight. Think positive and smile. ☺️

Hi EileenH, I will most certainly take you’re advice & start removing carbs from my diet. I really appreciate you’re input & all that you shared!  My lab work came back & my rheumy has reduced my steriod down by 21/2 mg from the 20.  So, alittle at a time,   Also, to determine the amount of steroid needed to keep symptoms of PMR at bay.  It’s all a rather long process that I’m learning.  I’ve really had problems taking steroids, as it’s  flared up severe gastritis & acid reflex.  Only, after increasing my  neurotin  by double strength,  (40 mg)  now, that I’m finally pain free.  What if a patient no longer can take steriods, than what??

Hi Michdonn, thanks for sharing & congrats to you for losing 23lbs.  I’m definitely going to watch my carbs & hope I’m as successful!!

Hi again EileenH, congrats to you & all others that lost their gained wt. & I’m hoping to be included in the success group also!!  Thanks again for all the info. you provided, I really appreciate it!

Linda, don't get discouraged our journey with PMR is a very slow one, but as the Prednisone doses get smaller and you have changed your diet to one with less carbs you will find that the extra pounds start to melt away. A good exercise program helps of course. I started walking then skiing and now cycling. The KEY stay active, positive and try to smile. ??

If it is gastric problems that make it desirable then it is possible to use injections which minimises the gastritis problem - they are mentioned in the most recent guidelines for the management of PMR:

https://www.rheumatology.org/Portals/0/Files/2015%20PMR%20guidelines.pdf

There are various drugs which it is claimed make it easier to reduce the steroid dose - none of them replace pred however and they show varying levels of success (or otherwise).

The most recent and probably most effective is Actemra/tocilizumab which has been approved for GCA but there are rheumies in the USA using it for PMR but I have no idea how they fund it.

EileenH, I sometimes wonder if some of the medical staff just tries different codes till one works. It almost appears that way, no rhyme or reason, to how things are done.

You got to love it! ☺️

EileenH, thank you so much for the great info & sources provided!  Very helpful & interesting.  Planning to discuss the option of using injections at next appt. My past wk has been very challenging, thus affecting my response replies, which hopefully you can understand.