When to begin taper

[Grammajoy]

Markers were normal on labs. Told to begin taper (have been on 40 mg for 5 weeks but no relief . Legs and feet numb and stiff, vision really bad, brain fog, mild headache, ear and jaw pain, exhausted, etc.). Prednisone is probably causing many of symptoms so can't decide whether or not to begin taper.

[Mitziecat]

Hi

Sorry tonhear that afre 5 weeks you have had no relief in symptoms. I am fairly new to this but sounds like you should be increasing instead of reducing the prednisolone. Especailly so if you have appear to have symptoms of GCA. I would seek a second opinion.

[Mitziecat]

Sorry about the type errors. I have brain fog today 😀.

[SheffieldJane]

What happened about your GCA biopsy Grammajoy?

You really seem quite symptomatic to be beginning a taper. I wish doctors would look up from their numbers and just look at the patient in front of them.

It is a hard balancing act deciding when to taper down from a high dose and equate that with the damaging inflammation caused by GCA.

40 mgs is a modest dose for GCA symptoms. Sufferers on here have had to go to 80 mgs sometimes to control the thing. Is there any reason that your doctors are being so conservative in their treatment of you?

High dose Pred can make you feel all kinds of rotten, but it passes.

I would be arguing with my doctor about beginning a taper when GCA was making its presence felt so clearly.

I'm glad you got in touch, I've been wondering about you.

Keep us posted. X

[Grammajoy]

I did not have biopsy.. Rheumatologist said not necessary as had been on prednisone so long it would show negative.. Had MRI and MRA and both were clear. Rheumatologist had me increase to 50 for 3 days while waiting for labs and I did seem better on 50. Eyesight and feeling head is stuffed with cotton are hardest to deal with. Perhaps I should increase to 50 for a week? I trust opinions on this forum more than MDs😬

[DorsetLady PMRGCAuk volunteer in reply to Grammajoy]

Hi

As you felt okay st 50mg might be a good idea to go back to that dose. You can then contact Rheumy and ask his advise -and also tell him your problems at 40mg and discuss tapering - say to 45mg, then 40mg if all good - symptoms wise!

[Grammajoy in reply to DorsetLady]

Good advice and I am starting that plan today. As everyone knows side effects are difficult to live with but seems necessary evil. Thanks to everyone for concern and advice

[PMRpro Ambassador]

If you have been taking 40mg of pred for 4 weeks and the symptoms with which you presented have not been relieved either you don't have GCA or - and this a FAR more likley, you simply are not on enough pred.

I think I would already have been looking for a doctor who treats the patients not the numbers. And who gets the message that if the patient does better on 50mg than 40 mg - 40 isn't the right dose.