Is this my new normal?

Anniecurd, I always understood that the auto immune condition burns itself out as and when it wants to. Thus some patients have it for a couple of years whilst other sufferers may never be free of the one episode. As you say the preds only reduce the inflammation that in turn results in the pain. If we ever suffer a flare it's because we are not taking enough preds to control the amount of inflammation we have in our body at that given time anyway. So no I don't think it extends the length of time the illness is there. Tina

Anyone that knows any of those answers would make a fortune.

Two blood tests ago my sed rate was 4, a month later on the

same dose of pred it went up to 25..  I asked doc why?

He shrugged his shoulders, the medical people even those interested and caring don't know all the answers.

Faye, don't forget the all sorts of illnesses can cause raised esr/crp. A cold sore in my case, for which I suffer relentlessly from, always raises my esr/crp levels. That's why my dr always asks me how I feel as opposed to relying solely on the blood results. Regards, tina

No-one knows. It is an autoimmune condition, there are many different forms in terms of the expression or the symptoms we see. As far as is known the pred is only managing the symptoms - like cleaning your living room of dust when it is dusty outside because of the road works that are going on. You can keep it looking pretty good but you haven't dealt with the real cause of the dustiness. Stop the road works and the dust goes away.

It isn't really known how pred does it - though it is possible that it works on a group of white cells called neutrophils which can cause inflammation though, again, how isn't known. They have been found in GCA and other forms of vasculitis - but they are probably a marker rather than anything else. That may be a better way of monitoring the illness and success of any therapies but that is still being looked at. 

If your ESR goes up it can be because of a wide range of things, none of them to do with the PMR or GCA. Colds, flu, injuries all can lead to a rise in ESR so a single raised value should never lead to an increase in pred dose - unless symptoms suggest it is needed. CRP is a sign of chest infections in particular - they can increase the level but up to 10 times and was actually where it was identified and named originally.

It isn't known for sure, but the underlying autoimmune disorder probably waxes and wanes. You may be able to reduce your pred dose when it is relatively inactive - but an increase in its activity will lead to more inflammation and needing more pred again to manage it. Sometimes it may reduce enough for you to stop needing anything to manage the symptoms - and then later it can flare up again and back you are, needing pred. It only goes into what is called "spontaneous remission" - the unpleasant truth is that you will never be totally free of it. It is relatively unusual but it is possible to have episodes of PMR 2 or even (very rarely) 3 times. If that sounds awful - it is better than most autoimmune disorders where it is there all the time and some are even life-threatening.

So, no, I doubt whether taking pred sooner or later, higher or lower doses makes any difference to the overall course of the illness. There are things you can do which do seem to reduce the amount of pred you need - avoiding aggravating activities, using alternative therapies to deal with what I call "add-ons", an antiinflammatory diet and other things have helped some people a lot to have a more comfortable life. Whether any one of them will help you is something that only you can identify. In general, there are loads of people on the forums who have tried most things and found nothing that helped. But a good diet definitely does help. Not eating too many carbohydrates - and NO highly processed stuff - does seem to help avoid or minimise weight gain and help avoid the risk of diabetes. Adding plenty of antiinflammatory foods such as oily fish, garlic, turmeric and so on has helped a lot of people.

But how long does it last? How long is a piece of string. 

If you have frequent cold sores let me  suggest you try

(if you can get it, I'm assuming you are in U.K.) an old

time remedy called Campho Phenique.   i have had a

bottle for years and anytime I even start to get a feeling

of cold sore I dab some on a few times a day and it

dries it right up.  Works great.   It's on our pharmacy

shelves and very inexpensive.

Having had a bit of a search - it appears to be available in the UK from that famous rainforest company for a mere £20 for 2. 

Personally, I'd suggest a trip to the pharmacy and ask for cheap generic acyclovir cream. You use it in exactly the same way and it does exactly the same thing. It's fairly cheap from an independent chemits - if you can find such a thing. But even Boots has Zovirax for under £6 - and that's the brand.

Sorry not being in the U.K. I don't understand your money

system at all.  I"ll check on Amazon and see if it's still

available.  It's a very old product.

I looked on Amazon and they have lots of different versions

of Campho Phenique and it's more costly than I would have

thought.  However, don't think the acyclovir or zovirax

can be bought over the counter here.  The bottle of the

Phenique that I have is probably about 50 years old.  Still

works good.  It will probably outlast me......

Hello everyone answering the cold sore question. I have tubes of the cheap generic acyclovir cream that I start using as soon as an itch appears. My GP has also prescribed me acyclovir tablets for when I develop one after the other, if she didn't I don't think I'd ever be able to taper, as I never taper when a cold sore is present. Thanks for interest. Regards, tina

Hi Faye, the active ingredients of Campho Phenique are camphor and phenol (carbolic acid)  I think you can find these ingredients in other over the counter products for cold sores and lip salves for example. I have heard of straight camphor oil being used for cold sores too. That is really cheap in comparison to other products mentioned. I have never tried it myself on the other hand. 

I don't live in the US but I know what a dollar is! £20 is slightly over $30.

It would have to be pretty good stuff for me to pay that for 2 small packs of gel - 6.5g/0.25oz each. That is all that is available on amazon uk and it is shipped from the US.

If one is going to get 'side effects' from the pred, when will they show up?

Sorry to disagree - but in the UK it isn't based on weight. In PMR it is a fairly standard approach, using a dose of 15mg and, if that is not enough, 20mg. Nowadays it is agreed that heavier patients may need a higher dose to get inflammation under control but normal weight patients usually do fine at 15mg and the higher dose is only used where a patient doesn't respond as well as hoped to the 15mg. It is an attempt to avoid going to too high doses - both to avoid side effects and also because if a moderate dose doesn't achieve the desired effect an alternative diagnosis should be considered.

At one time pred dose for other things was calculated on body surface area - which doesn't vary as much as you might think!

It depends. Some people will notice some effects quite quickly. Other effects may take far longer to show up. Some you would never know about if the doctors don't test for them. Weight gain isn't inevitable - some people lose weight. The best thing I can suggest is if you notice somehting happening that is different then come and ask. Some things are due to PMR and would happen whether you were on pred or not. Pred gets blamed for a lot of things - and it isn't always fair.

There are 82 listed side effects of pred. No-one gets them all, some people get next to none.