Hi, all.
I was diagnosed in May and have like most of us, had highs and lows.
In my case decorating the kitchen, sorting floor boards, to moving slower than a slug and utter despair.
This site has kept me sane, I think.
I have reduced from 15-12.5-10 and was battling through 9mg this week, only to have developed a chest infection which the Dr insisted on increasing steroids to 30mg for 6 days. . .gutted.
I then resume 9mg dose.
I feel this is a huge set back and is going to be difficult, the Dr assured me the increase shouldn't be a problem.
Has anyone out there had a similar situation??
Hi Julia
All i can say you have dropped very fast. I'm on the other spectrum staryed sept 2015 at 20mg just now doing another tapper to get me to 16 using the drop dead slow.
As much as i am slow i feel you are dropping way to fast. Most people stabalize at 10mg for 6mos before dropping again.
Mariane
Hi,
Thank you for you're reply,
Hope this doesn't disturb you, it is 2.30am in UK, and I am still awake.
My reduction has been quick, only 2wks on 15, 6wks on 12.5 then 6wks on 10.
Started last Sunday on 9mg, now at 30, just hope when I go back to 9 I dont feel as un-well as I have done every time I reduce the dose.
My rheumatologist has set this reduction, unfortunate I have had to increase it.
I hope you are well
Hi Julia
I haye to tell you this but your rumi knows nothing about reduction and i can almost guarantee you that you will feel awefull dropping that fast.
Prednisone is to control your inflammation and if your in that much pain your inflammation is not under control.
I personally stabalize after each reduction even though the amount i reduce is lower than normal. You usually only reduce no more than 10% at a time and i use the dead slow method as a guide. I drop slower than it.
Use this forum and site to gain info on reduction in speaking with rumi. Knowledge is power and understanding.
I'm sure other people will comment when they get up. I'm in Canada so 11pm and now my bedtime.
I also split my dose, i take 5mg at 3pm to control afternoon pain and the balance in the morning.
Good luck
Mariane
Julia, it's very common for preds to be increased quite drastically when you have an infection and then dropped back to the dose you were on previously and usually it works OK if it's for only a week or so. I'm just out of hospital with pneumonia and was given 2 intravenous doses of 100mg pred each (my current dose is 21mg),
Of course, you have the complication of having tapered too fast down to 9mg. You may want to go back to the dose where you felt ok. Was that at 10mg?
I was due to taper to 20mg a few days ago, but won't do that until I'm completely over the infection.
Hi,
Thank you for you're reply.
The reduction had been quite quick from what I can gather from the forum.
My rheumatologist was insistent the reduction would be quick.
That said, I think I would rather have the aches and pains of this illness, than the overwhelming fatigue.
I haven't slept all night, definitely at slug pace today and will probably have to go to bed, it's a lovely sunny day and I should be in the garden.
Hope you feel better soon.
6 days of 20mg pred and stop for a chest infection is a fairly normal thing - and that is effectively what he's given you. Though unless you have severe inflammation and a respiratory history I can't imagine why he's doing it. An increase like that isn't really needed just because you are on pred. A bit more possibly, but not 20mg.
However - you still aren't getting the "life in the slow lane" bit about these illnesses are you? You have a relatively serious illness and your body needs rest to have any chance of recovery to a status where you will be able to do things more normally. If you had flu you would rest - this isn't very different, just chronic and it takes longer to recover.
"I haven't slept all night, definitely at slug pace today and will probably have to go to bed, it's a lovely sunny day and I should be in the garden."
Only if the bit about being in the garden means relaxing in a zero gravity chair or on a sun-lounger!
all of the above .....
an antibiotic kills off the bugs that cause a disease. prednisone suppresses the pmr symptoms.
an antibiotic can be given at a standard dose for standard period to kill off the bugs (with very high chance of success). Nice for acute infections that arrive, are treated, and go away.
the pred dose is managed to just suppress the symptoms. As the condition slowly goes into remission the pred dose can be reduced. Reduce too fast and symptoms return. Too slow and side effects may be apparent for longer. The pred dose has to keep pace with the symptoms, its no use reducing the pred according to some plan and expecting the symptoms to follow. Pmr is a chronic, long lasting, condition.
I've had a couple of episodes where I needed an increase in pred. One was a mild attack of shingles with very swollen lower leg. Increase for a few days then back to dose before increase. I've also had a few false alarms.
This does all take a lot of getting used to / making adjustments. It all sounds easy as we type away on our keyboards. But no. It ain't easy. Its a life changing roller coaster.
I don't think I ever separated the pain and the fatigue. Not an either or for me. And they occurred to different degrees at different times. At higher pred I was keen to get rid of the side effects, but not at the expense of return of pain.
awake at 2am I find something to do rather than keep being restless and trying to get to sleep. Which was a problem when I couldn't concentrate. But after a short while I could go back to trying to sleep. There's all sorts of tricks. I guess I'm lucky - I could fall asleep in relaxation sessions. 
But the techniques have their uses.
I think its easy to be derailed in early stages. Every day seems to bring something new and unexpected to deal with. Unsettling, or scary, certainly not stable - which is a good place to try to get to.
I don't think I ever really stopped to smell the roses, too restless and impatient, but I did/do have to pace myself. If there was an olympic sport in sitting still I'd be disqualified before starting.
Hi, Eileen,
Thank you for you're reply.
I so wish I had you're voice of reason in my head, my life in the slow lane is very miserable.
I do have seasonal asthma and now have a chest infection, I have managed to reduce the steroids albeit not pleasant, felt like I am going backwards.
I think these drugs are affecting my brain, all night could not switch my head off, planning fund raising events for a very sick dog, even down to the colour and design of poster, absolutely ridiculous.
You're comment of zero gravity sounds good to me at the moment.
I hope you are well.
Hi Julian,
Thank you for you're reply, and the comments, it makes s perfect sense.
I just don't think my brain is computing sense to my body.
If I don't have the pain I have the fatigue and vise versa, just pegging the washing out is a huge effort.
I didn't expect recovery to be quick but do feel it's 2 steps forward and 5 back.
Go back to 9mg on Friday from the 30 I am taking at the moment, need energy, looking after my daughter and 3 year-old granddaughter next week.
I hope you are well.
Yes, thank you, I am fairly well - but only because I am realistic about what I can do. I have just driven from northern Italy to the south of England, just a few weeks after a month in northern America preceded by a week at a medical confernece in Canada. Knowing all that had to be done, I don't do the other things that I know would be too much when I have to do these things.
And looking at your other post - looking after your daughter and her 3 year old comes under that heading if there are other things that must be done. While I would help with that - I personally couldn't even begin to do that, it is physically beyond me and has been since PMR started - I certainly would regard it as something I should do without a lot of help.
Life in the slow lane is only miserable when you try to fight it. You can fight all you like against PMR and say you will defy it - it won't work. Choose your battles and life becomes far more pleasant. I do vast amounts of things now - but I still have days where I suddenly feel as if I have been hit by a brick wall - I nearly fell off my dining chair the other evening for example. I gave in and went straight to bed - I was OK the next day. Had I fought it, I wouldn't have been. Taking sole responsibility for a young child is not something I even add to the list - if that happens you are possibly putting that child at risk and that is irresponsible. Bear in mind, too, the pred does not always leave us entirely rational.
I know, I know - I sound a miserable old git
Hi, Eileen,
Thank you for you're reply.
You are not an old anything, to me you are very knowledgeable and help me make sense of this illness.
I couldn't even imagine driving from and to where you have.
The lack of being in control and the unpredictable aspect of pmr is taking a lot to adjust to.
My daughter has an operation tomorrow, that's why I am needed, and if at any time I am unwell I have a back support to take over.
However, the fact that I have to second guess what I can do and when is what I struggle with.
I will start what I know will be a stressful week as positive as I do every week, and hope my cup remains half full and not feel half empty as it has done this week.
I am by nature a little irrational, so after 40hrs of no sleep, think the steroids definitely made my thinking a bit off.
Better today, I value the points you have made, enjoy you visit to UK.
Take care.
I have been looking after 2 grandchildren for a large part of their Summer break. I suggest you just concentrate on the necessary......feeding and sleeping. Have a nap if your grandchild does. 3 year olds need quite a bit of attention but if they're happy with a dvd don't beat yourself up if you do a lot of that. They'll not come to any harm for a week. Forget the housework....it won't run away. Ask yourself if it will matter in 5 years time. If the answer is negative then just leave it. Colouring pencils, paper and paint if it's easy to clean up. Glue and any crafts. I have an oilskin cloth on my kitchen table....wipeable. I hope it goes well.
depends on the child I guess, we were lucky with two very independent girls who seemed to understand when dad was overloaded. Even at three. Make a game out of helping?
But that's not why I'm posting. My misfortune is to have a history of industrial process improvement. Strangely useful for me managing chronic conditions. Part of my aim was thus to make it as predictable as possible. That generally means change one thing at a time. Either stop doing things one at a time until stable with what remains. Or stop doing everything and add things in one at a time until unstable and back off.
Not quite that regimented, life without spontaneity can be a bit dull, just a general approach, and a little bit methodical.
Once the polywhatsit is stable and in control (at least as predictable as it can be) then its easier to be flexible. It took at least 6 months. Now, after more than a couple of years Its second nature.
The "spoons" version of "I only have so much energy for a day how shall I spend it" may be useful. Another way of looking at pacing. If I use it all in the morning there's none left for the afternoon. Keep going and the tank is empty tomorrow.
Pred did (and I suspect still does at 3mg/day but hardly noticeable to me) mess with my mind. I was very aware of the need to remain positive. I preferred the highs to the lows, but had to warn people I was in "silly mode". Hard to solve simple problems and concentrate was just a tad horrible. And of course when I asked someone if I was making sense the answer was always yes .....
PS just read something on a different topic that rang a bell. I also have hashimotos syndrome, another autoimmune condition, that reduces thyroid output, which means very much reduced energy and fatigue.
May be useful to consider there may be other things going on as well as the pmr.
Hi,
Thank you for you're reply.
Happy times looking after grand children, they are a gift.
I will be fine, lots of colouring books and my daughters op goes well.
Feel much better today, so glass half full.
Hope you are well.
Hi Julian,
Thank you for you're reply, late response to you apologies.
Th comments you have made are of great comfort to me.
Depths of despair at times, and yet was up at 5.15am this morning, focused and now at hospital with my daughter, Saturday I hardly had to he energy to put the kettle on.
I will see my gp regarding this never ending fatigue, I am still convinced a food intolerance has an affect on my energy levels, which is how this nightmare started.
Not eating certain foods as I am sure they made me feel tired, (wheat and gluten), inconclusive tests, then I hardly ate anything in case I couldn't go to work. Crazy set of circumstances have now resulted in my diagnosis.
Today is a lovely sunny day, and as long as my daughter and grand daughter are ok, I can cope with anything. . well, today I can.
I hope you are well, take care.
I hope all goes well with your daughter's op and you have the energy for your granddaughter.
Thank you, that is so kind of you.
Hello .Hope your daughter's surgery goes well and you feel better soon. Do not do anything you do not have to do. Children love an easy snack and a video. Best to all.