Fatigue and rest and nausea

I know I had had PMR for 5 years before it hit like a ton of bricks - but it was never so bad it stopped me altogether. I'd given up aerobic classes and step - I struggled to get up onto the step because my thighs just felt weak. Then I could do less and less of other stuff. And the fatigue - the mind numbing "I just want to SLEEP" in the afternoons.

Yes - when you have PMR you have to learn to manage your spoons!!!! Google the spoons theory by Christina Meriando!

The buffalo hump and chubby hamster cheeks - yup! All familiar I'm afraid. But they do go away again once the dose is lower and you are more active - because some of it is the lack of exercise that is forced on us. Restricting carbs helps while you are still on pred though, many people find it helps the cravings and hunger pangs and does help with the general weight gain.

Have you seen the most recent reduction scheme I posted? You just creep down on a continuous basis, 1mg a month about:

"My reductions are VERY slow. I use the following pattern to reduce each 1mg:

1 day new dose, 6 days old dose

1 day new dose, 5 days old dose

1 day new dose, 4 days old dose

1 day new dose, 3 days old dose

1 day new dose, 2 days old dose

1 day new dose, 1 day old dose

1 day old dose, 2 days new dose

1 day old dose, 3 days new dose

1 day old dose, 4 days new dose

1 day old dose, 5 days new dose

1 day old dose, 6 days new dose

By that stage if I feel OK I feel safe to go all new dose. I suppose you might be OK starting and stopping at "1 day new, 4 days old" but I was terribly sensitive to steroid withdrawal pain so I err on the safe side. Once you get to the "everyday new dose" - if you feel OK you can start on the next reduction, no real need to spend a month at the new dose.

This avoids steroid withdrawal pain - which is so similar to PMR pain that you often can't tell which is which and some of us suspect that many flares are NOT the PMR returning but problems with steroid withdrawal. Using a scheme like this also means you can stop immediately if you have any problems - you might be fine at one day old dose, 2 days new (lower) dose but not at a 3 day gap - but you have dropped your dose a lot and that is the idea. It also isn't as slow as you would think - you can reduce at a rate of about 1mg/month on a continual basis."

Hello jennissw.. Everything you write is very familiar to me - in fact I am sure everyone with polymyalgia is the same. Don't worry and "learn to love your steroids" is what one of the ladies said to me when I was first diagnose over 2 year's ago. This was in response to me being concerned about my appearance! Just think whet the alternative is and chubby cheeks and a humpy neck is the least of our worries! Best wishes Tired Lady (Kathleen)

Hello Jennissw. I've had all your symptons except the nausea (due to the fact I reduced very slowly) and I did baloon up in weight and had to have a whole new wardrobe of clothes. It does return to pre pred when you get down to a lower dose and it did get me down and depressed but now everyone comments on my weight loss. What is the alternative not to be able to move and be in pain. Stick with it and my sympathies are with you but you will get there in time. I'm 18 months with PMR and on the road to a full recovery. Be good to yourself.

This should probably be a new topic, but have only used this forum a few times & not sure how to go about it. Have been on pred since March 14th & am finding the psychological effects difficult. Was using the search engine someone described having difficult focusing & feeling frazzled & disconnected which pretty much describes my feelings. I have always been a bad pill taker & have an adverse reactions to almost everything. I realize I will need to be on this for some time & am wondering if this subsides or at what dose does it become less or does it?

I see the importance of slow reduction, but the psychological effects make me want to speed it up so I can feel like myself again.

Hi Mary! First the education bit: to start a new topic scroll up to the top of this page and you will see a grey bar under the green heading bar. On the left hand side yu will see a green blob with "start a new discussion" - click on that.

Yes, feelings like that are not uncommon and if they get too bad you should mention it to your doctor but they often improve after a while - you are still very new to taking pred yet. You don't say what dose you are on - it does also improve with lower dose too.

However - don't just blame the pred. I had PMR for 5 years without being on pred and I can assure you that some of the things pred are accused of causing can also appear just with PMR! I'm quite unusual in that I have been on every available form of pred so far - the first didn't cause me too much bother except the weight I'd put on with immobility due to PMR before being put on pred redistributed itself to my midrif! Another form of pred made me put on a load of weight, I had muscle wasting and a beard. The current one is great - lost weight, feel back to normal. It is true that if you expect to have side -effects you are almost certain to have some! On the other hand, the side effects are very real so I'm not dismissing it. When the side effects you have already noticed will fade depends a lot on the patient - we are all different so I can't say "this dose", "that dose". It will improve though.

In the very early days of my membership of this forum another lady launched a tirade against "dreadful pred" - and a couple of us pounced on her (metaphorically speaking of course!). She also suffered from mood and concentration problems and really hated taking pred. Four years on she had made her peace with it.

The reality of the situation is that if you have PMR and the symptoms affect your life too badly you need to take pred - it is the only real means of managing the symptoms by reducing the inflammation that leads to the swelling and stiffness in the muscles. As I said, I managed OK for a long time but my life was quite badly limited. If I couldn't drive and park to get somewhere I couldn't go. It was a simple as that. I was was permanently tired and in pain - ordinary pain killers did nothing. Anyway, they have unpleasant and sometimes dangerous side effects too. Then the PMR got far worse and I was so pleased once I was given pred. I was almost back to normal within 6 hours! Some bits took a lot longer to fade but I wasn't in anything like as much pain.

I also fully get why you want to reduce fast - but that is the worst thing you can do unless you decide you want to risk "doing" PMR without medication, the painful way. That also puts you at an even higher risk of developing GCA, and if you develop GCA there is no choice: if you don't take pred, at much much higher doses, you will be very ill and can even lose your sight.

The ongoing inflammation in your body in untreated PMR puts you at a greater risk of quite a few other things, including cancer and heart trouble, so learning to get on with your pred is a helpful idea. It is for all of us a love-hate relationship - none of us WANTS to be on it, but without it our lives would be quite a bit less pleasant. And even without pred you still won't really feel entirely like yourself again. PMR makes its own rules, and the stark reality is that this is a life-changing event that you will need to learn to manage. Pred is part of that management.

Thanks Elaine. Of course you are right. There is no way you could deal with this w/o the pred. I have always been able to get by with almost no medication, but I realize that is not the case this time & must adjust accordingly. Not easy for me.

As time goes on & reduction is possible why is this possible? What is it that makes this happen? Oh, I am on 15mg. & CRT is 21.

Thanks for all your help. This is difficult.

The first dose you are given for PMR is one that is enough to work for the vast majority of patients. 75% would respond to 12.5mg/day within about a month. More respond to 15mg, many within hours, and that is the average starting point. A few require 20mg to deal with the pain and stiffness. Once you have that under control you then start to reduce the daily dose until you find the lowest dose that is enough to control the symptoms. Everyone is different, some need more, some get away with less.

The usual, doctor suggested, reductions are quite steep (by our reckoning at least) and often result in a "flare", a return of the symptoms, and that usually means going back to a higher dose to get things under control and that, of course, slows things down. Many of us believe it isn't always really flares, it is often a reaction to taking away the pred. Going very slowly can avoid that and you can reduce steadily and consistently. Some people are lucky and are able to simply reduce steadily and get off pred in a couple of years. Others are less lucky and get stuck - at the dose that controls the symptoms. The PMR you see and experience isn't the illness - that is the symptoms of an underlying autoimmune problem that makes your immune system unable to recognise your body as "self" and it attacks various tissues as an "enemy" and leads to inflammation.

Before trying to reduce ask your GP to check the CRP - that is an indicator if the inflammation and should be much lower than that. If it is still high it may be too soon to reduce. Once you start reducing it may rise if you have gone to too low a dose - it is always worth checking it.

That's enough lesson for now ;-) Good night!

Eileen

Thanks. Night. Sweet dreams!

Hi I agree with Eileen H.

a lot of people on this forum are trying very hard to reduce their medication for various reasons.

Due to my various conditions I am now taking about 14 tabs a day but so far I've outlived my mother by 15 years and my grandmother by 7 years probably due to the medication I take daily.

Taking the appropriate medication is not necessarily a bad thing.

It may be protecting you from pain,disability and possible blindness.

Just think of it as a necessary evil.

Hi everyone and thanks for all the replies etc.

Eileen last time I printed off your regime and have been more or less trying it out. I seem to be okay every other day but did start every 4th day.

I can understand people wanting to come down quickly but I've learned for me it has to be mega slow. I cannot afford new clothes so am sort of squeezing into what I have - not a great look.

Mary, my story is after about 6 weeks on 15mg, I could not sleep, felt very hyper and irritated - but after another 6 weeks (I had to go back up from 12.5) it all settled down. I am 13.5 and sleep much better, and feel less frazzled. Maybe it takes time for the body to get used to it?

I meant to say, I was low on Vitamin D by quite a bit and so I supplement using thornes vit d3 with K2 in MK4 form. This has helped the low feelings I had no end and I feel lots brighter and relaxed. I also have magnesium but cant stomach it so use the super saturated oil spray...I have some in the morning and 1/2 before sleep - I sleep so much deeper with 10 sprays of that.

edits* sorry

I meant to say, I was low on Vitamin D by quite a bit and so I supplement using thornes vit d3 with K2 in MK4 form. This has helped the low feelings I had no end and I feel lots brighter and relaxed. I also have magnesium but cant stomach it so use the super saturated oil spray...I have some in the morning and 1/2 an hour* before sleep - I sleep so much deeper with 10 sprays of that.

Thank you all for the encouragement & from keeping me from rash reductions. What a bizarre little disorder this is. It is unlike many other things where less is more. This appears to require a delicate balance. The vitamins are a good idea. I take calcium, d & magnesium.so have to make sure to keep it up.

Vit D deficiency should be checked for as part of the differential diagnosis of PMR (that just means PMR should be what is left after other things have been ruled out). Low vit D can cause muscle and joint pain just like PMR and almost everyone is low on vit D - north of the level of Turin, Italy or so it is only possible to make it from sunlight between May and September (the rays must strike the skin at a high angle) and it only works around midday when the sun is at its highest and with no clothing on your face, shoulders and arms or suncream being used. Even here in northern Italy not far from Turin about 80% of people are deficient - we just tend not to go out into direct midday sun without at least some covering up. It is simply too hot in the sun.

Jennis - I resisted buying new clothes except trousers but had to buy something for my daughter's wedding. I've just had a good 6in taken out of them so I can still get some use out of them! But other than that it was just cheap t-shirts. Luckily I hadn't thrown everything out - I'm now wearing them again. It does happen - honestly.

Mary - yes, a very delicate balance, in many ways like finding the right thyroxine or insulin dose. We're all different - and it helps when you always bear that in mind. Doctors want a "one size fits all" and it just does not work. The calcium is very important in this - it changes the effect pred has on the bones with respect to calcium and helps avoid osteoporosis the relatively easy way. If you can't cope with the calcium you are given (some people get an upset stomach), ask for a different one to try.