When pacing is not working

Hi,

Thank you for you're reply,

you are so right, gardening is my sanctuary, it's the stopping before you over do it, I can't seem to get right.

Like with the floor boards, didn't even feel tired when I had finished and quite pleased with myself that I had done the six I planned to and no more.

Will practise the little and often and also "spoons'theory, so frustrating.

Hope you are well

Hi,

Thank you for you're reply,

It will burn itself out, has to,

you put me to shame, how are you still working as well as looking after a family.

The last job I had was in January and had to resign as the pain and fatigue were unbearable.

I started on 15mg and felt like super woman, then developed a headache so dose was increased to 30mg for a week, felt very ill, reduced to 15, then 12 now in 10 until next week, then 9.

I feel worse today than before I was diagnosed.

Horrid illness, so hope we are all better soon.

If you are feeling worse now, you really must not reduce your pred as planned.  Please, for your own sake, wait until the inflammation is properly under control again.  If you had a broken leg you wouldn't be running all over the countryside now, would you?  You'd be following doctor's orders and keeping weight off the bone until it was knitted together.  And then you would reintroduce your activity gradually.  Just because PMR is invisible doesn't mean it isn't every bit as real as a broken limb.  There are other invisible diseases, like diabetes, for example, and a person with that disease has to follow a particular protocol or they feel wretched.  PMR is no different.  We have a pretty scary medicine, but managed well pred really is our friend.  ???????

Hi,

Before diagnosed and still working felt ill, tired aching thought it was doing a physical job at 61, this I had to resign from.

Now I dontt seem to have much energy even in a good day although the pain has gone.

My rheumatologist has set this reduction and although I have said when I reduced from 12.5 to 10mg I was really unwell, he said he wanted me to be off steroids within the year, so next week I reduce to 9 mg for six weeks and continue to reduce every six weeks.

If I am really unwell I will go and see him.

I don't know at times which is worse the chronic pain of pmr or the overwhelming fatigue of steroids.

One day at a time as they say.

Take care

You'll get some good advice from the real experts on this forum on how to handle the rheumatologist.  Getting off pred within a year is, quite simply, unrealistic.  Getting your dose down to a low level, through careful management, that could be a worthy goal.  

It's possible that after a couple of days rest you will feel much better.  But if you don't that could be a sign that your taper is too fast.  In general, if you feel bad right after a drop in dose, but improve after a few days, that's usually pred withdrawal.  Your body needs time to adjust to the lower dose.  On the other hand, increasing pain over several days generally means the PMR is flaring.  And you really don't want that to happen.  To nip a flare in the bud, so to speak, go back to the dose where you last felt well and stay there until you are sure the symptoms are under control again.  Google healthunlocked dead slow nearly stop for a brilliant reduction plan.

Oh, and the fatigue is due at least as much to PMR as it is to the steroids.  In fact my husband said I was like the energizer bunny when I started pred last year!  Fatigue didn't hit me until my adrenal glands had to wake up again, around 7 mg. 

Thank you Julia, but I don't put you to shame at all, we are all different. I'm 53 so not sure if we are similar ages.

i wouldn't say I look after them, I cook wash and tidy, but have nothing left for them, they just see the worst of me. The jaded, drawn looking mum, it's such a shame, I've held 2 jobs down for 12 years but not sure for how much longer, it's too difficult and tiring.

i see the consultant Friday for more information as possible lupus as well.

i hope you have a good day tomorrow, rest and take care.

 

Bless you.

I will definitely look at the reduction you mentioned.

I would like to feel like that energised bunny, just for a day.

Take care

I will be thinking of you Friday,

Take care

I've been on and off steroids, 2 to 4 months of the year, for almost 20 years, because of prior health issues not related to PMR, and the only side effects I had, were a lot more energy and very easily irrated. I always said " I could take on a bear and win" definitely never felt this lack of energy and extreme exhaustion. I don't agree with blaming the exhaustion, on prednisone,. This is my opinion.not the opinion of the members In this forum.

Thank you. 

Do you sleep well, I'm really struggling, I get 1-2 hours then wake for ages, legs really unsettled, just wondered if it's just me, early treatment 2 weeks today only or???

Insomnia is common and 'normal' for PMR and Steroid use so it could be either/and/or. It 'should' settle down.

I get unsettled legs - helped a great deal by taking a magnesium supplement.

Thank you will get some today any dose specific ot just as they come? 

"It will burn itself out, has to,"... "he said he wanted me to be off steroids within the year"

Between those two statements it says to me you're setting yourself up for heartbreak if you aren't careful - you MAY get off pred in a couple of years, it is unlikely you will do so in a year without a lot of discomfort - or if you do then you will very likely have a relapse. A US publication said some years ago that 25% of patients get off pred in under 2 years but they are at a higher risk of relapse than others. A further 50% take up to about 4 to 6 years. The rest of us take even longer - I've had PMR for 12 years and it hasn't gone away at any point I've noticed. The standard German rheumatology textbook says quite clearly pred will be required for "an average of 5 years". 

If you have a rheumatologist who is set on getting you off pred in under a year come hell or high water you face a hard road. He obviously doesn't understand the nature of the disease. It is not one where you give a course of medication and it is cured - if it were we wouldn't be here. He wouldn't ask his RA patients to get off any of their DMARD medications in under a year - and for us pred is the DMARD. Without it the symptoms will return. 

As Anhaga has said you are looking for a low dose that manages the symptoms acceptably without allowing the inflammation to mount up again - that's what leads to flares. And, as she says, getting that dose down does actually require management of ofther things. 

This link

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

takes you to a post with a load of useful links to info and other sites about PMR/GCA. In the replies you will find the very slow reduction plan that has worked for many of the people on all 3 forums - it isn't slow if it works! It is probably what Anhaga meant. 

Feeling like an energised bunny doesn't mean you should do things like the energised bunny - the battery will still run down and leak like it did with the floorboards. I cook and wash for my husband, luckily the rest have left home. But I don't even tidy - there are lots of a different sort of bunny in my house because I have hard floors   . I do what I feel able to and leave the rest so I can do the really important stuff - the world doesn't come to an end because my floors are a bit dusty!

I don't blame the exhaustion on pred - I had PMR for 5 years without pred and I was exhausted then. In fact, many of the things pred is blamed for are equally as likely to be due to PMR. Including irritability and bad temper (mine was prize-winning!) and weight gain (due to being unable to move well and quickly). 

Sleep disturbance, too, can be pred - but it can be PMR. I used to lie awake for hours, if I got to sleep the sweats would often wake me in the early morning. Or the burning pain in my hips due to trochanteric bursitis would do it. And even well-managed on pred I still get the odd sweat in the early mornings, especially now in the summer when it isn't cold overnight - because that helps a lot.

Some people develop "restless legs syndrome" - and if it is really bad it may be worth discussing it with your doctor. But magnesium will often help too - don't take too much or you'll get the "runs"! It's also a traditional remedy for constipation taken in a high enough dose - so more isn't necessarily better...

Well said, Eileen. This is a time for deciding what's important in life and for me it ain't housework. The energy burst at the beginning of pred is something else but it bit back when I overdid it. Lesson learnt.....almost. It still happens occasionally but less so. I don't know who said to me many years ago an expression which I use. A hundred years from now will it matter? Worth bearing in mind.

What energy burst? I never had one - I just felt well and not in as much pain at last! Didn't result in a sudden desire to do the cleaning either! 

It only lasted for a day!😀

OK, I didn't miss much then...

I always loved the feeling of boundless energy, 20mg of prednisone used to give me. I was almost my old self. The last time this happened was Spring of 2015, before PMR. I was on the 20mg pred for breathing problems. And to think, I thought I was bad with my health issues then. They were a breeze compared to this PMR

Smiled at your mention of dust bunnies.  Yesterday I really knocked myself out by cleaning out the cutlery drawer.  Today I've been considering what momentous task I should tackle next.  This kitchen cupboard or that one?  If I consider the matter long enough it may soon be tomorow.  But I think my dust bunnies are turning into tigers....  Doesn't help that we have two gently shedding cats!  ????  

I have a sign up : MY HOUSE WAS TIDY YESTERDAY, SORRY YOU MISSED IT !!       

Love that sign .. I have one that says "keep your kitchen clean eat out" .. think I'll try to find yours and hang it up too

Cleanliness is next to godliness, tidiness is next to impossible :-)

Love it. Haven't seen this one.

My motto (not sign though) is 

"Dust is very patient - it will always wait..."

I have a sign with picture of a hen that says...

This kitchen is closed...this chick has had it.

My husband has a sign over his basement clutter: "Bless this Mess".

Hi Julia just updating you on Fridays appointment.

The rheumatologist was not impressed with my starting on steroids, he wants me to reduce to 25mg daily, I have, but the shoulder pains are back already, he did confirm sjrograns syndrome and ruled out Lupus and PMR, apparently I'm too young and ESR not high enough (36) I think it is pre steroids was 70 something before that. My thyroid bounces borderline and normal all the time, he wants me to go se an endocrinologist, but last time I went with extreme fatigue and pain they said my thyroid hasn't failed yet, my thyroid antibodies are raised again but the tsh, t4 etc just normal.

I'm obviously really down now on several levels, the pains coming back, with 5 mg reduction, and what do I have? It's awful, and if its sjrograns no cure for the aches, pains , lack of movement. I can't keep working like this, but he says I'm not bad. But I couldnt walk move etc without extreme pain, couldn't sleep, get fully undressed etc without help on occasions, 53 and no answers.

 

Hi,

I was wondering how you had got.

I am no expert, quite new to all this, but age I don't think has anything to with it.

Plus blood tests can be normal when you have pmr, mine were that's why it took over a year to get a diagnosis.

Try not to be down, I know it's easy to say, have you thought of speaking to you're Gp again, regarding what the Rhemetologist has said.

The gp may refer you to another consultant.

Find the strength to get the answers and treatment you need.

Takecare

I always feel it would be very helpful if these rheumies who tell us our pain "isn't bad" had to live with it themselves! He's OK, he sits on his bum a lot of the day and doesn't have to do a heavy job. But I've recommended a doctor in Leeds - get to see her. I think you'll find the attitude very different.

One thing I can not tolerate, is a so called doctor, that doesn't listen to his/her patients. Yours is just that, he is telling you how you feel, totally ignoring yout ehen youbdiscribe uour psin. You know your level of pain, he doesnt. He is one of those that knows everything and actually knows nothing.

Seeing GP Wednesday, she leaves at the end of August. But will keep battling, thank you. 

I'm so grateful thank you very much.

Yes, that's just how I feel.

Its a long road, I thought last week it was cracked and I had a diagnosis and could plan a treatment, I know no cure, but now I've had the rug pulled again, so will see if the endocrine says anything different then go to the person in Leeds I've just been recommended.

You are hardly 'too young' for PMR! and you ESR can be normal and you could still have PMR! This guy needs to do some more research!

Does pred reduce the pain associated with sjrograns syndrome?

If it doesn't then why is it working?

"not too bad?" who is this fool that thinks he's the judge of how much pain you are in??

ok, I just found out the answer to one of my own questions - pred IS used for sjrograns....

Never thought of that thank you!!! I will ask GP on Wednesday to refer me elsewhere I think. 

Like most autoimmune disorders Sjogren's can only be managed symptomatically. If pred helps the PMR-type symptoms then it should be used. Of course, it is also possible to have PMR and Sjogren's/sicca syndrome - MrsO had PMR and some other similar syndrome but I can't remember the name.

But I wouldn't give that rheumy house-room...