Almost there

[Pumukkale]

Festive greetings to all and thank you for making time to reply.

Bit of an early start this end, just back from dropping my daughter to the bakery!!

Anyway, almost there with the final surge of activity trying to co-ordinate between the GP and Consultant. Just to share the correct information so that GP can sign off the treatment and inform the pharmacy. There seems to be a Yuletide Log jam in the ether!!!

So I resorted in the good old print and hand in person approach. After few emails and phone calls, popped off a to the surgery with the essential correspondence that only I seemed to have access to! To be honest everyone was very accommodating and hopefully the prescription and treatment plan maybe in place today.

I have been thinking about the tapering aspect. Has anyone tapered up from a lower level to the point of which the steroid treatment is working? I relate this more to the PMR condition.

It seems that there is a generic initial delivery of 15Mg to start, across the board that is followed and if affective taper down slowly. Looking into the steroid side effects it seems that that is the whole treatment accumulative exposure to the drug that is the greater concern.

Its just I have been discussing with one of my clients who is very much involved in the pharmaceutical industry and we covered health, winding down work a little etc. My story unfolded and with in seconds he said you have PMR. "The steroids have a fantastic success rate with almost immediate effect. One of cheapest to produce and great sales."

Fair enough, it is business and commerce I thought whilst commissioning his wonderfully designed eco efficient heating system, to serve the swimming pool and house.

Anyway he did mention the " finding the sweet spot" of the drugs operating efficiency band and the importance of defining that as early as possible to reduce the overall exposure, will possibly assist in preventing long term side effects.

So back to my question and tapering or the 15mg stating dose. Yes the 15mg has a very high success rate and is set at the generic and strong foundation starting dose. But you may only need 10mg, or possibly less, then you are being exposed to the drug unnecessarily. It could be months before you reduce 15 to 10mg. It seems that the use of Pred is a personally engaging one, which seems to mostly discussing the taper down not up.

I did mention this to the consultant but the 15mg was prescribed with out further ado, so assume the subject is not up for discussion.

As I am new to this, and just ready to start, then its possible?? I can't feel any worse surely?

Well thats about it, any thoughts or info are obviously welcome and if I have posted a rediculous question possibly due to waking up too early please do accept my apologies for tiring your eyes and not woking on the cerebral level. Obviously I will act in a responsible manner, so please do not worry about my maverick approach!

Festive thoughts to all, with best wishes

Take care😊

[DorsetLady PMRGCAuk volunteer]

As explained in my intro post which I linked in your first post - the official line is start patient on lowest dose that achieves a result between the range 12.5mg -25mg. As you say 15mg seems to be the favoured dose. However, that is not always high enough for every patient, so there is scope to find what level is. The criteria for proving it is enough is at least a 70% improvement in symptoms… sometimes that’s immediate, for others it takes longer.

My opinion is that if you haven’t achieved that within 2 weeks, then it’s not high enough.

You are initially prescribed a higher dose than you would need on a daily basis because it has to do two jobs… mop up the inflammation that has built up before starting the Pred and at the same time deal with the daily shedding of substances that cause the inflammation/pain. Once that has occurred, you then reduce to find the dose that day by day gives you the same relief as the initial dose did.

So back to query, if 15mg is not enough to give relief, then it can be increased ..if it’s too high then you should in theory be able to reduce more quickly - perhaps…

Obviously no one wants to be on more Pred than necessary, but you need what you need.. there is little point in not being on enough. Untreated inflammation can be doing more damage to your body than you realise.

Being exposed to an extra 5mg over few weeks/months is not that horrendous.. if it were 50mg then that would be different. Many on here who have either been on pred for longer than many doctors would like, or who have been on high doses for GCA and have exceeded the cumulative preferred amount of Pred have come through without falling to pieces..or suffered long term side effects.

[PMRpro Ambassador]

"Has anyone tapered up from a lower level to the point of which the steroid treatment is working"

Probably - but in general it doesn't work - you are always playing catch-up and you remain in pain and with symptoms for much longer so getting pred load with no benefit. There is also a lack of a diagnosis building block - how you respond to a moderate dose of pred. The speedy improvement at 15-20mg is felt to be characteristic of PMR and some doctors depend on it. If you need lots less, you will be able to reduce quickly - in the way some doctors try. But their break-neck reductions rarely work, suggesting that these moderate doses are a reasonable starting place.

Starting higher and titrating down rather than up results in a relatively short extra time on pred - this is a disorder which lasts at least 2 years or more. I've had it for heading for 20 years - that is unusual but does happen in a small number. My accumulated dose is way above their magical 10mg that is bandied about but I don't have osteoporosis, diabetes, nor have I collapsed in any other way as yet after over 14 years on pred - delayed diagnosis seems to be another risk factor for a long duration of PMR. Come to think of it - there is a lot of magical thinking on the part of some doctors when it comes to managing PMR ...

[SnazzyD]

It seems to come up on here a lot that hunting for the sweet spot upwards tends to result in reduced effectiveness of the Pred. This does seem to be borne out by those who have flares due to dipping below the sweet spot and then climbing the ladder in small increments. Given doctors’ fear of Pred, you’d expect the upward search to be preferred, but perhaps it wastes too much time and pain doing it that way anyway. e Perhaps someone here could say why.

It certainly seems to be the medical norm to go in high and hard and drop down. It is interesting to note that for PMR there is a limit and they don’t go all in with say, 50mg for PMR, but with GCA they do. Occasionally, people here say they have been started on 30mg for PMR but that is not in any guidelines.

To my mind, it would be easier to determine the sweet spot from the basis of no pain to having pain, than having lots of pain still and trying to tell from one day to the next if there has been an improvement. Could take weeks of needless discomfort. For your reduction, bear in mind that if the starting dose has been successful in dealing with all the inflammation if you reduce too fast and in too big jumps, you will end up over shooting and yo-yoing back up again. Depending on your level of inflammation, it may take a couple of weeks for your too low dose to be overwhelmed enough to cause symptoms. By that point you have no idea if you would have found the sweet spot and may be faced with going back to a higher dose than you really need. Going off track a bit, you sound like you are an active person. The Pred doesn’t mean you can crack on pain free, even if you feel like you’ve been given some pep, especially in the mind. Your autoimmune condition is still there and needs to be allowed for until it burns itself out some way off yet. You find a level but don’t push through any signs from your body that it needs to rest.

[PMRpro Ambassador in reply to SnazzyD]

"Perhaps someone here could say why."

I think it is mostly because you are always playing catchup - the dripping tap is filling the bucket while you are using a coffee cup instead of a beer mug to scoop it out. And it isn't an instant response either way - so you are in pain while waiting and the inflammation gets even worse ...

[Merryfield]

Started at 30–been up and down at the beginning. That dose knocked it out (never goes away, just goes to sleep.). Now down to the equivalent of 7.5 after a year (diff steroid than at start.). I plan to try to reduce more after Xmas travels. My sed rate started at 128, down to 30, then 9, now 33. My sed rate does work as an indicator for me. If my sed rate keeps going higher, I will up the steroids. It is a balancing act. A knowledgable GP is a godsend.