Morning allI've just got diagnosed a few days ago and started Pred on Thursday 20g
My symptoms have improved ... however I have a quick question regarding how food is enough with preds as I would ideally to like to take them when I get up at 6am but don't really eat that much at time .... would a few nuts do or a piece of toast? Sorry for the silly question
Thank you
Hi
And welcome
Yes a slice if toast will do, or yogurt which is what a lot of people take
I did link you info on your reply to another post - so will replicate it here for completeness-
Hi and welcome, Maybe have a read through this link - healthunlocked.com/pmrgcauk...
and then look at FAQs - see here - healthunlocked.com/pmrgcauk...
and when you feel able to ad a bit to your profile/bio...as this describes - thank you -
A few nuts probably isn't enough. If you like it, yoghurt is a good option as you can leave it next to your bed and you don't need to prepare it!
Hi,
When I first started, I got up at 0230 hours to take my starting dose of 30mg pred. I always had a slice of toast and butter, and a cup of tea.
It worked well for me, but, as I’ve said before, we are all different, and what’s ok for me may not be so for you. A bit of trial and error I guess.
Good luck
Paddy
I have a piece of hard Swiss cheese or Comté. I actually take mine at 2am.
hello , I have all the symptoms of pmr , was your diagnosis made by blood tests . Thanks
Hi yes mine was made through blood tests
Hi, I take mine around 02:00 yogurt and usually a banana.
Hi, I take mine at 4am with a small banana or half a large one.
I found I needed a large bowl of porridge when on higher dose to not feel sick - can you take them later?
I take mine at 2-3 a.m. I have three big dessert spoons of full fat yoghurt cut with a little milk so that I can drink it rather than spoon it. I put it in a little flask next to the bed so that I can take it then roll over and go back to sleep!
I have been taking mine around 5-6....I am wondering now if I should try 2 am time. At this point I am so ill in the am I can't take it much more. In process of trying to go from 20 to 17.25. Did ok for few days then it hit me hard and it's been about 4 days of intense pain...the worst so far. I just took 20 of the pred returning to last best dose. So...if I wanted to change the timing after today how would I do it...just take.my first dose at 2 am "tonight"? Know what I mean? I wake up around midnight to take hydrocodone....could I add the pred then or is it too early???
All advice welcome!
Yes - all you are doing it taking it a bit early.
Does hydrocodone help? If it does - it must raise the question: is this PMR?
No...I wish the hydrocodone helped the PMR ....it helps other things. Although right now it's not doing it's job well. I have been on it for a long time for osteoarthritis and fibromyalgia.Thanks for confirming I am just taking it early. Is 12:00 too early? Since I have trained myself to wake then...or do I need to stick to 2:00? Thanks so much.
Try it - see how it goes.
Ok....thanks. I saw the info on the timing of the inflammation changes in the body, etc. so I wanted to see if you saw a flaw in 12:00 dosing. Thanks, as always you have been a great help. Be well. M
about two months ago I began taking my pred at midnight. I have had the best results ever with this timing. My mornings are perfect now… I think I’m one of those people that pred takes hours to become effective, so midnight works for me!
Thanks for letting me know. My PMR seems to morph over time as it improves and tanks. The last few days have been the worst....not sure why other than the magic of living with PMR. In the beginning (spring) my mornings were ok....I didn't have the severe stiffness. That has changed over the last month. And my pain levels have gotten worse as well. So just trying to get to a better place. My rheumy is forcing a faster reduction of pred....so after a month and some change of things improving, it all dissolved this week. I hope I have as good as a result as you have for sure! You take care. Be well.
I hope the new timing brings relief to you.. better days ahead?
"My rheumy is forcing a faster reduction of pred."
I imagine there might be some link between that and the return of pain.
Yup.....Which is just making me upset and mad. When I went from 20 to 17.25 I was ok. Felt good about it. I did have some w/d symptoms for a couple of days but it settled. Then a couple of days ago increased pain and fatigue hit me hard. Today the pain is almost a 10. So I agree with you. I took 20 this am and will do the same with tomorrow's dose. Not sure what to do about the doc but.....I need to see what happens next. How long should I try to stay on the 20.....before I try to do 17.25 again...IF things settle down I mean.
Personally I’d stay there for 5-7 days -longer if necessary...and then maybe a smaller taper…if you just have 2.5mg tablets then you can cut them in half (so long as they are plain white uncoated sort) to give 1.25mg…
But I would be asking for 1mg tablets - you’ll need them in future, but many find they require a smaller drop down from 20mg - and you may one of them. Never mind what your doctor wants!
Ok. That sounds good. I have 1's from when I took 3 mg a day for RA pre-PMR. My only issue is the one pushing me has control over the scripts. But if your suggestion works I will get in touch and tell her. Thank you, DL.
You have two problems here I think - a doctor who has fixed ideas but the possibility this may not be "just" PMR is also real. Forcing a fixed reduction rarely works all the way through, but for some people it is hard from the start. And getting into a yoyo pattern as a result makes it worse. No chance of a change in doctor?
I would have to start over. She is the best around and has been until this whole pred thing. I know from the yoyo..mI got caught up in that for months until I found you all. I had no clue. Unless thete is something very very similar to.PMR symptoms....sore neck? Shoulders, upper arms, limited use of arms; girdle and thigh pain and back/side/butt spasms. While I had issues with my right shoulder in past...I never had the other pain. And the pain is different than my RA, OA, fibro. My legs and feet are swollen, my hands are puffy. I cannot do anything...I am so tired. And this tired is different than the fatigue from the other things I have had. This fatigue stops a lot of functioning along with the pain when it's like this. So
...from what I have read that's PMR...but if it's something else I have no clue. Do you know of PMR like diseases? I just hope returning to 20 helps. Also.I wonder if something might be happen8ng along GCA lines because my.neck is worse and I have a mild headache. .none of the serious GCA symptoms...but something is happening.....I feel a lot worse and a tad different. Hmmm. It sounds to me like GCA just.hits...nothing slow. But I am just thinking/whining outlook. So....what do you think...
If you think it could be GCA, then you need to talk to your doctor. Neck, headaches could be that, as could shoulders/arms -but those along with other symptoms could be PMR flare. Whatever it is, further investigation required.
Ok...it just feels like something is brewing....but it could be PMR has blown up and through the pred change. I will keep an eye on it for sure. Thank you DL. 👍 🤔
It doesn't have to be full blown cranial GCA - large vessel vasculitis could make things worse in the PMR symptoms The fact you have RA removes one possibility - late onset RA and other form of inflammatory arthritis can present looking like PMR. GCA can start small and grow - everything can.
When this all started I assumed it was my RA...my second flare ever. But the rheumy said no because of where the pain was...the list above which I had to agree does match what I've read. Then the whole thing about quick reaction to pred..a few days. Of course the one thing both of telhem cause weight loss has not been a symptom....damn it all. I list weight with my first RA experience. I kept telling my then rheumy I was not trying..and that my body felt different but...then weeks later the pain hit and I could not use my hands.
Also I am on pain meds from before PMR and they don't help my PMR pain symptoms. And my joint pain is worse but I think that's inflammation and the prednisone side effects.
So......any other advice? Thank you all for your time on this......I am concerned about what to do. I wish my old rheumy had not retired due to covid...I would kill to talk to him. He was the best rheumy ever.
Ok Senora Pro......thank you.
I have found through listening to the advice on this site and also trial and error, that .5 mg reduction at a time is more than enough. My "rheumie" does not agree, but my new GP does and he says, the slower the better.
Yes....that might be it. I was hoping at the higher doses I could go higher but guess not. Not sure what to do..see how I do changing time of dose and if that helps. If not then I need to.go and have another conversation. Thanks.
The big problem I think you may have is a great sensitivity to changes in the dose of pred combined with a less than optimal response to pred - you need a higher dose than others may do. It isn't uncommon in the early days of an episode of PMR. But many doctors think everyone is the same.
l have been down to 5mg for several years and never had any side effects. I used to take it with my breakfast. After reading a post here recently l decided to take it at bedtime. I didn’t know l should eat something and so far have felt ok. What are the possible symptoms of taking pred without food?
Don't really know in that I have taken pred without food for most of my years on pred with no problems. At present I take Lodotra, a delayed release formulation which is to be taken at 10pm within 3 hours of a meal or together with a substantial snack (bread and cold meats or cheese is suggested, it is a German product) which creates the correct conditions for the coating to break down.
I read on my instructions to disolve mine so I always have and usually have breakfast first ???
Another possibility. I keep a pack of cheese sticks in my freezer and take one with me when i go to bed. It has thawed out by the time I take my pred and, although a bit sweaty, is perfectly palatable and does the trick !!
I use bio and me porridge at around 8am to 9am then take the prednisolone on 5mg at moment
I have been on prolia injections for the last few years but have recently found my hair is falling out. But i cannot take AA so will have to continue
Yes...nothing is easy. I am having a lot of prednisone side effects....and they are not fun but the pain of the last 48.hours is mot doable for. The real problem is the same a lot of people go through...the issue of doc vs. predThey control the dose because the write the script. I am going to have to go on a dmard even though I don' want to.go on either of them. The one you are on is not an option ai have been told ...I asked when I saw her two weeks ago.
So now I just have to wait and see.
Ok..take care of yourself! Be well.
Because the FDA has not approved it. She does se to be someone to work the system. In DC it was so different. At one point when I was pretty sick from chronic fatigue and epstein barr virus my PC doc got me nuvigil by saying I did shift work. He also put me on tramadol for fibromyalgia even though that was off label....and after trying all the typical meds with no success and lots of side effects....it kept me working I was so grateful. But here in lower slower Delaware, where we need more docs....not the same. (Everyone here calls it that by the way.....that's not my judgement or saying). So I might raise everything again with her. It's hard enough dealing with pain....this stuff with the docs is so strange and beyond annoying.
I am guessing they won't put it down for RA because my RA is not the issue. If it were my DC docs they might be willing. The insurance is also something I need to look into. Thank you for sending me the info though.
Yes. I consider myself lucky that the placquenil and 3 pred kept flares under control. That is why I immediately went to RA in the spring.
Eight weeks into PMR taking 15mg Pred
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Going away for country break not near hospital. How much pred should I take to ward off GCA in case of symptoms. 2nd time PMR. 
49 and diagnosed with PMR. Cannot take Pred.
