Struggling

[90planetree]

Hi all

I view site everyday & find it very useful, started on 20 Prednisolone last August & was reducing okay until I tried to reduce below 10and symptoms came back with a vengeance with pain in head & very tender at bottom of skull (new) & the usual areas when first diagnosed, shoulders hip girdle backs of knees & groin. I contacted Rheumatology & the registrar instructed the nurse to tell me to go back to 20 (so disappointed) until I see him on 1st April when I will have been on 20 for 3 weeks!

I wonder if anyone has any advice on tapering down to 10 the second time around & obviously I will have to taper at 0.5 from then on! Has anyone had a similar experience? All comments appreciated & thanks in advance.

[DorsetLady PMRGCAuk volunteer]

“Recognised” taper may be 20-17.5-15-12.5-10mg - but it’s not achievable for everyone - as you’ve discovered.

A much more sensible approach is no more than 10% of existing dose . So 2mg would probably be okay for first reduction, then 1,5mg until to you to 13 or 14 then change to 1mg.

But whatever way you do it, you need to be at new lower dose long enough to know it’s okay before you step down again. If you have issues you don’t just carry on, you stop get things together again, and then continue.

Another thing, you probably didn’t need to go all the way back up to 20mg, 15mg may have been sufficient- but it is what it is.

You might like to have a look at this - healthunlocked.com/pmrgcauk...

[90planetree in reply to DorsetLady]

Thanks DorsetLady... I will probably do the recognised taper or maybe the second one you mentioned, after seeing the registrar.

[PMRpro Ambassador]

Don't worry about tapering down until you see the rheumy - he obviously is concerned the PMR has possibly progressed to GCA (the head symptoms). After 3 weeks at 20mg you will probably need to start over again - if the doctor is happy it isn't GCA after all.

[90planetree in reply to PMRpro]

Thanks PMRpro...do you think the bad head symptoms could have been related to the tenderness at bottom of skull? Hoping not GCA! It has improved a lot since taking 20mg.

[PMRpro Ambassador in reply to 90planetree]

We always hope it isn't GCA. I know a few rheumies who are sure that 15mg can be enough to relieve GCA symptoms but they don't risk it and use plenty. A week isn't bad - but I'd be happier if it were sooner. If the symptoms come back, especially any visual problems, don't hesitate to get further medical advice immediately.

[90planetree in reply to PMRpro]

Thanks PMRpro & SheffieldJane for your input & will take this on board.

[SheffieldJane]

The headache that I associate with my GCA ( diagnosed nearly a year ago after 4 years of PMR and down to 3 mgs Pred was at the base of my skull. Please be alert for other GCA symptoms such as jaw claudication, visual symptoms, ear pain, sore tongue and immediately seek emergency care.

[CO_mtnLady in reply to SheffieldJane]

Having gotten a sore tongue, along with a headache at the base of my skull for the last two nights (while reducing Pred down to 6 mg.), I am trying to understand what is meant by “Jaw claudication” in GCA symptoms... Definition of claudication is “limping”. Can anyone explain how a jaw can feel limp? Thanks for your help. You folks are wonderful! 😘

[PMRpro Ambassador in reply to CO_mtnLady]

Claudication pain is pain that develops as a result of activity of a muscle or muscle group and which then resolves when you stop that activity only to start again when you resume the activity.

The most commonly experienced form is in the legs:

"Claudication is pain and/or cramping in the lower leg due to inadequate blood flow to the muscles. The pain usually causes the person to limp. The word "claudication" comes from the Latin "claudicare" meaning to limp. Claudication typically is felt while walking and subsides with rest."

It doesn't FEEL limp, it makes you limp.

In the jaw it is tiredness and even pain that develops while chewing, especially harder food, and which can be severe enough to stop you eating. One test for GCA is suggested as chewing gum at one chew per second for 2 to 3 minutes - developing pain suggests the blood flow to the jaw muscles is impaired. One cause if GCA but there are other things that can impair blood flow in those arteries.

[CO_mtnLady in reply to PMRpro]

Thank you, PMRpro, for the excellent definition and clarification of this term! I really appreciate your prompt response and expansive examples of how claudication is experienced in our bodies. Blessings for a lovely day!

[leonardswife]

I started on 30mg pred and reduced extremely slowly over 2 years, sometimes going back a step but it worked I was desperate to get off pred but the doctor was very good and kept me on track.