Flair up

[Horizon12]

My first flair up since being diagnosed in February. Currently on 10 mg pred, do I need to increase this for a short time? It hurts a lot.

[Insight329]

First, I’m sorry that you are having your first setback. Did you recently decrease your dosage? If so, when and by how much? There something called steroid reduction pain which is different from an actual flare. The reduction pain usually occurs when you first decrease. A flare usually doesn’t occur until a few days after. I wait out reduction pains and the pain tend to dissipate after a few days. Do you have an agreement with your doctor that you csn up your dosage on your own? These are some questions that the Aunties will want to know to help you.

[Horizon12 in reply to Insight329]

Been taking 10 mg pred now for 6 weeks, as i find I can manage on this dose. Seeing GP tomorrow, so will discuss this with him. He is very understanding and usually agrees with what I want to do.

[DorsetLady PMRGCAuk volunteer]

Hi,

Looking at previous posts it seems that you have reduced from 20mg to 10 mg within 4 months. If so, that’s very quick. And I think you are working as well, which is another problem.

Would say you’ve gone below the level you actually need, and because you’ve reduced quickly you don’t really know what YOUR level is!

You need to speak to doctor unless he has given you permission to increase by yourself.

If your pains are bad, then probably an increase to 15mg is required. From then you may be able to come back down relatively easily, but I would suggest with what I’ve said earlier in post that 1mg a month would be more sensible!

You are very early in your PMR journey, so there is no rush to reduce. You need the level of Pred you need, not what the doctor thinks you need!

[Horizon12 in reply to DorsetLady]

Thank-you for your reply. I probably did reduce too quickly, and I am still just about managing to work although these last 2 days have been hell. Seeing GP tomorrow and will discuss an increase. Feels like it was when I was first diagnosed.

[DorsetLady PMRGCAuk volunteer in reply to Horizon12]

In that case, would definitely say - not enough Pred. Hope you get it sorted.

[PMRpro Ambassador in reply to Horizon12]

In that case you probably need to start again and then reduce to the last dose where you felt OK. When you reduce to a dose that is even slightly too low, the left-over inflammation that isn't mopped up each day builds up - until eventually you are in exactly the same status as you were pre-pred.

First you must get it under control - and then go back to where you last felt good, or slightly higher, and then reduce again SLOWLY. The way you got from 20 to 10 in 4 months was too fast. Theoretically it is possible - but even though that is SUGGESTED it always comes with the codicil that it is dependent on the symptoms the patient displays. Everyone is different, everyone responds differently to pred for all sorts of reasons - and everyone has a different activity of the disease. If it is very active - you tend to need more pred.

The impression I am getting though is that you didn't taper from 20 to 10mg? Just dropped. If so, after how long at 20mg?

[Horizon12 in reply to PMRpro]

Thank-you for replying. I was on 20 mg pred for 4 weeks, then GP dropped me down to 15 mg for 3 weeks and I have been on 10 mg now for 6 weeks as I felt this was holding the dragon back. After seeing my GP yesterday she has increased it to 12.5 mg. If that does not work I am going to up it back to 15 mg and start tapering from there.

[PMRpro Ambassador in reply to Horizon12]

Those drops were big and very soon - 2.5mg at a time is more than enough and the closer you get to 10mg the more advisable a smaller drop will be. Top experts recommend not more than 10% of the current dose - already only 2mg at 20mg.

If you reduce too often you lose sight of where was right for YOU. Which is what matters. You see a return of symptoms but you don't know at what dose you got to too low a dose - slow down. PMR lasts an average 5.9 years - there is no desperate hurry and going slowly at the start often leads to a less fraut journey. And especially so when you have to work - which will probably mean you need a bit more pred than yur neighbour who is retired and can rest if required.

[Horizon12 in reply to PMRpro]

Hi thanks for the advice, still quite new at this. Saw GP yesterday and upped to 12.5. Will see how I feel in a couple of days and if no better up again to 15 mg. Am struggling to work at the moment and I probably push myself to much. I have to accommodate this illness and listen to my body when my muscles are screaming at me to stop. Chronic fatigue is something else.

[PMRpro Ambassador in reply to Horizon12]

If you are working too you are likely to need a bit more - and pacing is what it is all about:

healthunlocked.com/pmrgcauk......

[Horizon12 in reply to PMRpro]

Have decided to start at 20 mg again. Can't stand the pain any more and analgesics are not touching it. Bring it on dragon, the fight begins again.

[SheffieldJane]

More info would help Horizon 12 to try to track why this is happening now eg what is your doctor’s advice?

What is your taper programme?

How long have you been ill ?

What do you think triggered this?

[Horizon12 in reply to SheffieldJane]

Thank-you for your reply. Seeing GP tomorrow. I don't have a taper programme yet, started on 20 mg and have been on 10mg for 6 weeks as I find this ok. Until a couple of days ago when this flare up began. I was diagnosed 14/02/2018. No idea what triggered this episode, may be stress.

[Horizon12 in reply to SheffieldJane]

Thank-you for your reply. Seeing GP tomorrow. I don't have a taper programme yet, started on 20 mg and have been on 10 mg for 6 weeks as I find this is ok. Until a couple of days ago when this flare up began. I was diagnosed 14/02/2018. No idea what triggered this episode, maybe stress.

[SheffieldJane]

A single drop from 20 to 10 would cause most people to experience a return of symptoms, you may end up returning to 20 and coming down in single mgs checking for symptoms as you go. I stayed at each dropped dose for at least a month and had no flares until I got to 7 mgs.

[Horizon12]

Thank- you for sharing your experience. I was on 20 mg for 4 weeks then 15 mg for 4 weeks then 10 mg for 6 weeks. Sorry if I mislaid you. Looking at all the information about tapering I am now going to drop 1 mg a week. Now currently on 12.5 and see how I feel with that.