20mg pred

[daworm]

Horrible morning, seems to be the pattern, good day, good day, BANG! Bad day...just to let ya know "I'm still here" says the PMR...if that's what it is...very frustrated so I email my Dr's office told them the magic of pred is gone after the first couple of days, can I go up to 20.mg..soon got a call saying yes and they want me in after a week of higher dose...if this doesn't work, time to see a specialist I guess...does anyone take a 20 dose at night?. Does anyone get help from muscle relaxers like skelaxin or flexeril...got lots of those from all the times I've had a bad back from work...how about any of the cannibis meds..I don't like smoking but I'll give it a try...after all I graduated in '67 so I'm an old hippy....

[daworm]

Oh yah, I took the extra 5 mg pred immediately after getting ok...split dose today!!

[PMRpro Ambassador]

The pred is only part of the story - you have to do your bit too. Just because you don't hurt doesn't mean you can go back to what was normal activity before PMR. You have to learn to pace and to rest appropriately. If you are having 2 good days and then a bad one - you are doing too much on the good days and PMR bites back.

Go to this post and read the links:

healthunlocked.com/pmrgcauk......

[daworm in reply to PMRpro]

so taking a walk is doing too much?..I "was" a very active person..I don't lift now, obviously weights are out, I walk some...if I can't walk and do a few normal things at the age of 68 whats the point?? Time to turn into a couch potato for a few years....dont think so.....

[DorsetLady PMRGCAuk volunteer in reply to daworm]

However,

You don't have to turn into a couch potato....but just because you're on the Pred doesn't mean you're back to normal.

You still have the underlying PMR, the Pred only addresses part of the problem - the inflammation in your blood vessels. So you have to treat it with some respect - your muscles are not as resilient as they were, you are more likely to get fatigued (both from the illness and sometimes the Pred) , so you physically can't do as much as before.

Do one thing at a time (not multi tasking as usual) - don't change the bedding, do the vacuuming, go shopping all in one day! Spread it out!

You can still walk, maybe not every day, shorter distances than previously, or breaking it up with a coffee and a sit down.

You don't have to give up living, I went out somewhere every day during my GCA journey, but you may have to do it in 3rd gear rather than top!

[PMRpro Ambassador in reply to daworm]

No, taking a walk is ideal - but you still have to do it in small doses and not go climbing hills if that is what makes you sore and particularly tired - rest BEFORE you crash. And you have to get into training too: start by doing just a short walk, say 5 mins out and 5 mins back. If that is OK - add a minute or two each 2nd day - you need to have a day in between to recover and be sure you haven't overdone it. About 5 years ago I could barely walk into the village, some 200 yards up a gentle slope. I built it up like I have described and within a few months could walk the short circuit round the village, then I graduated to the next shortest route and finally to the longest. And then I worked on speed - at first the shortest route took 45 mins and by the time I'd finished the longest was down to under 30 mins.

Turning into a couch potato is the worst thing you can do and a clinical study in Leeds is examining this. Patients are issued with a fit bit and told to record their steps each day and how they are. Then they are given a new target and encouraged to increase how much they do by their next appointment. Rinse and repeat.

Others will tell you their stories of getting back to a degree of activity - it isn't you CAN'T, it is just you have to go about things differently.

[daworm in reply to PMRpro]

That's just it..I still do feel rather stiff and crappy even at the 20 dose..maybe I expect too much from the pred as others seem to say I shouldn't have any symptoms...perhaps it's more than PMR, maybe gca although I don't have head problems (careful now)..dr appointment next Thursday, lots of questions, maybe a referral is in order..I like my doc but really, how many cases of this has the young guy seen??

[PMRpro Ambassador in reply to daworm]

There are VERY few people who have NO symptoms at any dose. Often people SAY they have no symptoms - but they are comparing it with how they were without pred! The PMR part and the GCA part are a bit different - and the stiffness is very much the PMR part. But in the early morning most people will be stiff until their pred takes effect because the new batch of inflammatory substances is shed in the body at about 4.30am. Between then and the pred being absorbed and reaching the blood and the tissues these substances get to work and cause inflammation, swelling in the tissues and so pain and stiffness. Once the pred gets to work it improves. So the sooner after 4.30am you take the pred the shorter the stiff period. The best time to take plain white uncoated pred is felt to be 2am - which requires some dedication but there are patients who do it. Then the pred is ready and waiting for the inflammatory substances and they never get to cause trouble in the first place.

Your doctor may have seen more cases than you think - it is the most common rheumatic disorder in over 65s! Whether the doctors recognise it and know what to do is more to do with how and where they were trained and, funnily enough, younger ones are often better than older ones. Because for the last 10 years the charities have been busy raising its profile and in some medical schools patients go to talk to doctors. Plus here on the forums we hand out links to medical papers and articles about PMR and GCA for patients to bring to their doctor's attention - it isn't just a load of late middle-aged ladies spouting a load of their own opinions.

[GOOD_GRIEF]

I've found that bad weather coming in makes me feel more pain and stiffness. Not much I can do about that, but I can look forward to the front moving through and feeling better when it passes.

[SheffieldJane]

You are going to have to learn patience with this thing daworm and stop throwing yourself at the bars of the cage. It will take as long as it takes but it won't be forever. Of course a walk is good on the flat. Naps are good too!

Just pace your activities and spend your energy like a miser. It's the only way to beat it. I think 20 mg at night would keep me awake but if you are awake at 2-3 am that could be a way to head the inflammation off before it gets going.

Wishing you well! Jane

[daworm in reply to SheffieldJane]

thats never been me, one to sit around, but I guess I have to learn...first full day of 20 I took it at 5:30 am because thats the first time I woke up!!! can't believe I crashed for that long, something was going on yesterday...just miserable...this morning...much better so far...sure shouldn't need a nap for awhile!! Usually I'm up two or three times to pee on this pred stuff....

[SheffieldJane in reply to daworm]

Glad you feel better today. I feel like I hate everyone, I am avoiding Gord for his own sake. As we say, this too will pass 😡 X

[Sandy1947 in reply to SheffieldJane]

My doc said Pred irritability decreases around 10mg. I'm at 18 so I have some time left. I'm consciously trying to be more patient. Doesn't always work.

[PMRpro Ambassador in reply to Sandy1947]

He did did he. Well, he may be right. For some people. But we are all different and some people manage to be irritable "just" with PMR! Never mind pred. So don't hold your breath - or you may be lucky that 17mg is your threshold!!!!

[Sandy1947 in reply to PMRpro]

You and the others on the site will be the first to know if and when my natural "sweetness" returns! PMR can definitely make people short tempered! Good point.

[SheffieldJane in reply to Sandy1947]

Well clearly I just have a bad nature because I am a t 7 mgs and feel irritable. X

[Sandy1947 in reply to SheffieldJane]

I doubt it! PMR with it's unpredictability and random pains can make us all nuts and irritable. Add Pred and it's not always pretty. At least we can commiserate with each other and get laughs along the way!

MB will come along with a chuckle from time to time. But sometimes I can't read all the words because of my impatience!

[Mitziecat in reply to SheffieldJane]

We all get impatient and miserable at times. A lot of it is pmr and meds. However, I feel that can also be just stressful everyday things in life. We probably didn't notice it much before diagnosis. Since my diagnosis I find it more difficult to tolerate things that I coped with before. Now learning to avoid things and people that increase my stress levels.

[daworm]

Frustrating day..crabby..haha..

[GOOD_GRIEF in reply to daworm]

This isn't the flu. It's not going away in 10 days. But if you did have the flu, would you be doing what you're doing now? Or would you be taking it easy and resting? if you injured yourself lifting wights, would you be back at it at the same weight and numbe rof reps, or would you back off and let yourself heal?

No, you don't have to lock yourself in the house all day. But you do have to spend your energy and strength wisely. Your goals right now are to keep your range of motion by moving slowly and gently so as not to injure yourself, and to keep from stirring up more inflammation with too much activity and stress. That's self defeating, and will make your recovery longer and more painful. PMR can make you prone to falls and to injuring your muscles and tendons, so you have to guard against that too.

We know how hard it is to scale back, but if you want to get better, and get better faster, it's the logical choice.

Frustration and patience are not my strong points, but I learned the hard way that this is one thing that will not succumb to my will alone. I have to use my brains.

I hear you, daworm, I hope you hear me.

[Hindags]

I took 20 mg at ten pm, delayed release Rayos form of Pred. Before getting Rayos I took 5mg when I got up to pee in the middle of the night. The rest I took at 8am. Made a big difference in how well I slept and how I got up in the morning.

BTW, I have found that gentle stretching exercises have been very important to keep me moving.

[daworm in reply to Hindags]

something I will think about...splitting like that...I hate mornings being stiff and sore, I just read a paper by a rheumatologist that says it does make sense to take prednisone at night for many...I should get the link and post it on here..

[Sandy1947]

PMR has a mind of it's own! Giving up control is the hardest part of this illness. Learn the concept of less is more because you will pay to play if you do it your way! Take it from the experts on this forum.

[daworm in reply to Sandy1947]

I don't doubt, just frustrated early on here with whatever is going on..

[S4ndy]

I am just adding my comments as someone who has been up and down the Pred steps for 18months. I am on 20mg at moment. I find it does stop me sleeping but I can usually get 5 hours. Then nap for a couple of hours later. I take my dose at 7am in the mornings.

As well as PMR I have osteo in my back,shoulders and knees. I take amitriptaline to help at night. I was on several other pain meds but have recently come off of them and use cbd oil, cannabis derived without the THC which means you don't get high but get all the benefits. Plus its legal in uk. I don't find it helps with PMR pain but have noticed it helps with stiffness. Also helps with fatigue and seems to help settle the digestion. I also take some to help relax at night. It certainly helps with pain as I was on opiates before I started taking it and two months later I am off if them and only need the occasional paracetamol.

Its making a difference with me so might be worth a try. I don't know where you are in the world but in the uk even Holland and Barrett sell it albeit a weak formula. Best to buy a good quality one like CBD Brothers or Synergy of Nature both available online.

Best wishes xxx

[daworm in reply to S4ndy]

I live in the states, I can get products like this one way or the other..ill go to Denver!! I too have OA in some joints thats why I use some opiates..hydro not oxy...as needed...I find them a great help.with pain and mood...theres a difference from addicted to dependent..ridiculous how some Drs are terrified of the gov and "war on opiates"...some people need them no one loves pain...the ones who can use them are paying the price because of the addicts who abuse them....

[S4ndy in reply to daworm]

I agree, you take what you need when you need it. I had to stop taking my meds as our NHS refused to buy them any more as the cost was too much. I have struggled to find a painkiller that works for me as I am codeine resistant. Therefore to try cbd and find it helps was great. Hope you manage to get some relief soon. You have a much greater choice of cbd in the states than we do in the uk.

[daworm]

nice to just be able to vent on a site like this even if I'm so crabby sometimes I don't make sense..jaja