Don't like this much

[Gurn]

I started on 15mg of pred in April, after 8 hours started to have some relief from the pain that had blited my life for three months, pain continued to reduce over following weeks and I started to feel back to normal. After two months was able to get down to 10mg, had some pain initially but decided to bear with it and this eventually lifted.

After blood test doctor advised to reduce dose to 9mg, again pain returned but thinking it would go away as before I stuck at it for 8 days, big mistake! I am still not entirely certain that the pain relates to my pmr as it only affects my left hip, left calf muscle and Left ankle which is particularly painful. I have now gone back to 12mg which I have been taking for two days providing I rest I am not getting such intense pain.

Any suggestions as to what I do next?

I have found the information on the site to be really helpful, it's great to read other people's experiences with this condition.

[PMRpro Ambassador]

Stick where you are until you feel things aren't getting any better and only then think about reducing. And then reduce only 1mg at most at a time. It also helps to spread the reduction over a longer period, not just going from every day one dose to every day the new dose.

This plan or something similar has helped a lot of people with reduction:

healthunlocked.com/pmrgcauk...

Resting is an integral part of management of PMR - the pred has cured nothing, it is only managing the inflammation. Your muscles remain intolerant of acute exercise and you will suffer badly with DOMS - Delayed Onset Muscle Soreness - if you do too much. And too much isn't what was too much pre-PMR.

If you haven't see this

healthunlocked.com/pmrgcauk...

it may help.

[Gurn in reply to PMRpro]

Thank you so much for taking the time to reply, your post was very helpful. I will take things at a slower pace in the future it's going to be more long term than I had hoped.

[Bittebitt]

Seems to me that you have reduced too fast. When I was diagnosed, my rheumatologist told me to stay on 15mg for 6 weeks, and then reduce 1,25mg down to 13,75mg. Don't remember for how long I stayed on that dose, but I think it was another six weeks. Then down to 12, 5mg. We don't get 1mg tablets where I live.

[Gurn in reply to Bittebitt]

Thanks I think your right, I see now that I am not going to sort this anytime soon.

[DorsetLady PMRGCAuk volunteer]

Hi,

PMRpro has given you good advice - please take it. I would add a couple of points -

15mg down to 10mg within 2 months is too quick. I guess you did it in two stages - 2.5mg each time. That is a "recognised " reduction, but many people find it too much - 1mg per month is more sensible, and more importantly, more successful. But only reduce if you have NO symptoms.

"I started to feel back to normal" - but you're not. The Pred only controls the inflammation caused by the PMR. It does nothing for the PMR itself, that is still bubbling along causing fatigue etc. You are given a higher dose than you need initially to get the inflammation under control, the art is then to reduce SLOWLY until you get to the level of Pred you actually NEED. That varies from person to person, and your own actions - if you just try to carry on as pre-PMR you will need more Pred than someone who takes things a little easier and learns to pace themself.

Get yourself back to feeling painfree, and then reduce more slowly.

Good luck.

[Gurn in reply to DorsetLady]

Thanks for the information. I did come straight down from 15mg to 10mg after a blood test and on the advice of the Doctor, so perhaps I moved too far too soon although I did seem to have the pain under control. The advice seems to be take things a lot more slowly and learn how you are reacting at each stage, pushing too hard is counterproductive.

I have read a lot of your post now and found them to be very helpful, thanks for taking the time to come back to me.

[DorsetLady PMRGCAuk volunteer in reply to Gurn]

Yes that's a big drop - 33%. Not more than 10% reduction of current dose is a good guideline to bear in mind.

[PMRpro Ambassador in reply to Gurn]

In many illnesses where short term courses of pred are used 5mg reductions often are OK. In PMR though you should be tapering not reducing. Which perhaps sounds pernickety but there is a difference. In tapering no step should be more than 10% of the current dose - which at 15mg is already only 1.5mg. 5mg is 33% - a massive change - and in the early days of PMR you are also running the risk of overshooting the right dose because it is almost inevitably higher in the early days of the illness than it will be later.

[1brian in reply to Gurn]

I'll just add in my experience which was to be started on 15mg which I brought down to about 5mg in the first 2or 3 weeks. I soon then got down to 2 or 3mg. However after a while I felt I needed more so am now up to 5mg. This is reasonably ok although not as good as when I initially took the steroids.I guess like most drugs the body gets a tolerance for them and their effectiveness reduces?

[PMRpro Ambassador in reply to 1brian]

Not really - you need enough pred to manage each day's new dose of inflammatory substances and that continues as long as the autoimmune part of PMR is active. Reducing at that speed you almost certainly overshot the dose you needed - you'd emptied the bucket of inflammation so you felt good for a while as the dripping tap was slow enough to take a long time to fill up. And the activity of the autoimmune disorder varies over time - when it is quiescent you can get to a lower dose but it may wake up again and then you will need a bit more. You may well find that 6mg takes you back to where you were - sometimes even 1/2mg can make that difference.

[Gurn in reply to PMRpro]

Thanks for your help I am learning a lot about my condition on this site and how to cope.

Just out of interest do you know what caused you to get PMR in the first place? I sure mine was linked to three successive bouts of a cold virus pre Christmas and over the New Year. My immune system did not seem to be able to cope and then I got PMR. I am slightly nervous as to what may happen this winter if I don't get this sorted out.

[PMRpro Ambassador in reply to Gurn]

There is no definite cause of PMR - over the years various things affect the immune system, it may be infections, stress, trauma, all sorts of things, and eventually a final straw breaks the camel's back and the immune system goes haywire. But it isn't haywire in the sense it can't fight infections off - I've actually had fewer infections while on pred than I did before! Everyone is different - but a lot of us would say the same.

[Gurn in reply to PMRpro]

Thanks that sounds positive I just thought if my immune system is shot, I would be open to types of infection.

[HeronNS in reply to Gurn]

Gurn, I seemed slightly more susceptible the first year, in that I had two colds. But second year, just past, back to my usual healthy self!

[Gurn in reply to HeronNS]

Thanks HeronNS that's good to know. I am normally pretty healthy too but prone to picking up the odd cold in the winter like most people I suppose. I think I will probably take so supplements this year to get me through the dark days of winter.

[piglette in reply to Gurn]

Hi Gurn, taking supplements can help the coffers of the suppliers and give you expensive pee. Really check that you actually need the supplements or you may just be throwing your money away.

[Gurn in reply to 1brian]

Many thanks for your reply, it does seem that we can all move at different speeds, its a learning curve I guess. The only problem is its a bit like steering a boat, a movement in dose up or down does not take effect immediately so if you get it wrong it takes you some time to find out which can be painful

[1brian in reply to Gurn]

Yes it's not so straight forward. I got my steroids very low quickly but am definitely worse today even though back up to 5mg. I appreciate this is still relatively low but I'm reluctant to go higher as side effects get more likely. The whole thing is a mystery - I don't really understand what the steroids do and why the body stops making its own steroids and if it is less likely to do so if it doesn't need to! It seems there are no alternatives as I tried for months to find one that worked. I've ditched all these now and am back on an average to moderately healthy diet and don't have any chiropractics or tai chi etc.

[PMRpro Ambassador in reply to 1brian]

There is no virtue in not taking enough - you have to have enough to get the relief that is the positive side to balance the negatives. As far as you are concerned at the moment the pred is the cleaning cloth that mops up the inflammation caused in your body by your immune system not recognising it as "self" and it attacks tissues thinking they are foreign bodies, like viruses or bacteria. One piece of kitchen roll may not be enough - whereas 2 does the job fine.

Your body needs a corticosteroid called cortisol to function properly and it is a very complex feedback system to get it right - occasionally you need a bit extra to cope with stress of various sorts. Bit like your car toodles along with your foot in one position on the accelerator but when you get to a hill you have to increase the pressure a bit, every so often your body needs to produce a bit more cortisol. But to use another analogy - like your central heating boiler and heat it doesn't produce more when it doesn't need to and the signals it receives tells it there is sufficient corticosteroid present in the body. It isn't proud, it doesn't care if it is natural or artificial, both do the job. So while you are taking enough pred, the body produces no cortisol. At lower doses it has to wake up - and it is like you on sick leave from work, it needs a staged return to work. Try to force it to function by removing the support and it struggles.

In PMR there is no alternative to pred if you want to be reasonably pain-free and able to function. Not yet anyway!

[1brian in reply to PMRpro]

Hi,if the body produces no cortisol when taking a certain level of pred isn't it better to allow the body to make its own if it will? However I would guess the reason we get pmr is because the body for some reason isn't performing this function.On a personal note ;I have been better today than yesterday even though still on the 5mg.

[PMRpro Ambassador in reply to 1brian]

Not if you need the pred as the antiinflammatory to manage your PMR symptoms. That is why you take it. As a result your body stops in-house production of corticosteroid so you don't end up with an excess - it is the excess that causes the side effects of weight gain, fat deposition and so on.

And no - although PMR patients often do have less than perfect adrenal function that is not the cause of the autoimmune disorder that causes the symptoms we call PMR. No-one knows the cause - it is probably the piling up of insults to the immune system, stress, infection, environmental factors, genetic factors. Eventually one thing too many tips the balance.

[Gurn in reply to PMRpro]

Thanks again some good analagies to aid my understanding.

[1brian]

But PMRpro - I would have thought the body has already stopped producing its own cotiscoroids otherwise we wouldn't need the steroids in the first place,i.e. the body would be counteracting the inflammation itself.

[piglette in reply to 1brian]

Hi 1brian, it is the steroids that stop the adrenal glands producing their own corticosteroids as the steroids do it for them. Before you start taking the steroids the adrenal glands are happily jogging along producing cortisol. The pred then comes along and produces cortisol as well, the body then says hold on there is an awful lot of cortisol floating about I will stop producing any until the amounts decrease to when I need to start producing it again.

[1brian]

Hi Piglette, what I don't get is that I thought half the problem was that the body has stopped producing it's own steroids which is why there is inflammation.

[PMRpro Ambassador in reply to 1brian]

No, something goes wrong with the immune system and it becomes unable to recognise the cells in the body as "self" so it starts to attack them as if they were invading viruses or bacteria. This damages the cells - and that causes inflammation. The pred reduces that inflammation - and as a result, the symptoms improve.

When the body stops producing its own steroid it causes a condition called Addison's disease.

[piglette in reply to 1brian]

Hi 1brian, as PMRPro says the adrenal glands only stop producing their own cortisol when you start taking pred, as pred also produces the cortisol. The body is geared up to only create cortisol up to a certain amount. As you already have that amount the adrenal glands lie back and take a rest until the body does not produce the required amount of cortisol, when they have to leap into action again. We often get quite tired when this starts to happen.