Zero Prednisone Discussion

Hello Betty, thank you for sharing your story with us. You are the first that I heard of having it 3 times and I'm really pleased that you are now third time lucky in that you have been clear of any symptoms for nearly 2 years although I understand that it's not unusual for a patient to take a long time to feel like their old usual self.

I know others will be very grateful for your story. Total successes are great to hear because they give the rest of us hope. Thank you and all best wishes, christina

Betty

You have a very interesting PMR story!

Did your hands get back to normal after prednisone treatment?

Also I didn't ever hear anyone taking prednisone at night. Did this reduce that jittery feeling? Did you eat something before swallowing the medication?

Thanks so much for sharing

I also take the larger part of my prednisone at night.  10/12. It has made a world of difference in the way I feel.  I sleep about an hour less and I awaken with damp hair but that's about it.  It took me about a good week to adjust.  

 In the morning I feel good and have quite a bit of energy but try not to overdo it so I can spread it throughout the day and so far it has worked for me.  Less and less do I have the feeling of my head being screwed on

backwards.  I know some days will not be as good as others but the good

days for now seem to be increasing.

After splitting the dose it took me several weeks to get to this comfort zone.

Hi Audrey

What are your doses of prednisone and can you advise what times you take the pred. I am thinking about splitting my pred. I am on 10 mgms daily.

Thanks

Kathy

Karen, the hands are bog standard osteo arthritis so no difference but I did buy a Therabath after an occupational therapy session had  demonstrated the comfort it gave.

Yes, the pred. at night did take care of the jitters. I always took my Pred. with a couple of tablespoons of organic plain yoghurt. Did not need the coated pills.

Hi Kassie,

After  my 2nd flare at 13 mg.  which I'm not now positive was a flare or perhaps caused from something else I was put on 25 mg which I couldn't tolerate.  I then divided the dose 15 at night and 10 in the morning.  Now I am starting tomorrow 12 at night to 10 in the morning trying to leave the larger dose if not even until the nighttime.  I generally take the night dose around 8:00 with a couple of spoonfuls of sugar free pudding or low fat cottage cheese and the morning dose around 8 with yogurt.

so far it's working quite well  but as I said it took a few weeks to adjust completely.  The fatigue was awful so I know what you are going through.

However, for me it passed and I'm sure it will for you as well.

Take care!

Audrey,Interesting to read that others have benfited from night time dosing. When I told my GP how well it worked he said he would add that to his sum of knowledge so I guess he had not tried it before.

Hope the good days soon outnumber the bad and your head stays on the right way round. I know exctly what you mean!

Thanks Audrey. I shall give it a go. Will let you know how things turn out. It is  most helpful hearing what others do and what there experiences are with PMR/GCA  and pred. Have a good day. 

Thanks

Kathy

Betty,

Wow, there are so many different kind of health issues that gang up on one person at the same time. I thought I had understood correctly that hand and feet problems did not occur with PMR.

I always wondered if an active culture/probiotic like yoghurt would keep me awake. One thing I know for sure is that dark chocolate eaten in the evening with its load of caffeine definitely revs up my system and keeps me awake.

Work done last year in the north of England confirmed what many of us knew: feet and hands can be involved in PMR. Unfortunately many doctors are unaware of this and don't diagnose PMR because the patient has hand and foot pain.

OMG, Eileen, I guess no part of your limbs is safe from PMR. Thanks for that update!

One more thing -- I guess this accounts for the heel pain I had that has been diminishing to a low register as I go through my prednisone regimen. I almost forgot about that.

By no means everyone has foot/hand problems - some people only have hip or shoulder problems, not both. Everyone experiences PMR slightly differently - which is part of the problem: doctors have an image as to what PMR should be but reality often doesn't match. Others haven't heard of it - or have forgotten what they learned.

Possibly - or it could be something else inflammatory that the pred is helping too.

Precisely why a young doctor at a teaching/research center who sees lots of PMR patients is the best rheumatologist to be cared for. My second Rheumy was a wonderful man with good listening skills but he was not putting 2 and 2 together for me. Number 3 Rheumy hits all the high marks. She is making a huge difference and she does email so I can be in touch if something strange happens.

Karren, I don't think there is any caffeine in yoghurt. It certainly has ever kept me awake but, of course, we're all different.

My hand problems predated PMR and, while on Pred, there was very little pain. One of its few benefits.

Betty

There is no caffeine in yoghurt. It's an active culture so I'm cautious about eating that kind of food and then trying to sleep.

I meant that to read "never" not "ever" Sorry.

When they say it is active they just mean the culture is alive. Yoghurt is made using live cultures of bacteria that ferment the milk. Some yoghurt is heat treated later to extend its keeping properties - they are the ones you can buy that are not kept in the chiller cabinet and they do not have any live bacteria. You can make your own yoghurt from the other sort by mixing it with milk and keeping it at the right temperature for some time - hey presto, cheap yoghurt!

Almost everything you eat has some bacteria, it is impossible to get rid of all of them, and the bacteria to be found in cheeses and yoghurt don't usually keep anyone awake.

And PS - live bacteria of the right sort are essential for life - but when you interfere with the normal population the bad ones dominate. We carry several kilograms of bacteria in our bodies!

I know you posted a month ago, but still...oddly enough I seem to find that a large tablespoon of plain yoghurt helps me to get a good night's sleep.  Don't think it has anything to do with pred, which I am still taking in the morning, as I had read in a different context some time ago that yoghurt could help with sleep issues.  I've been an intermittent insomniac all my life.

I found a banana and yougurt helped me sleep in the early stages when i first went on pre i was getting up at 4 in the morning, now its anytime between 6.30 and 8.00am and i still do it.

I guess this will be useful to post, that I also by chance found plain lowfat yogurt to be the very best nighttime snack for me.

A couple of ounces seems the right amount, and like BettyE I often use it to wash down my morning pred if I awaken with discomfort in the middle of the night.

I think I started eating plain yogurt after hours because I felt that it wouldn't require me to brush my teeth again, just a water rinse, when I would rather go straight back to sleep.

But somehow the plain yogurt and a little water seemed to be the best for restful sleep.