Increasing dose

[Shastring]

There is a lot of info regarding tapering but if you are started on to low of a dose of pred is it safe for the Dr to increase, mine just went from 5 mil once a day to 10 & he said lets try this for a while to see if theres improvement. I told him that from what I'm reading here is that it isnt enough for a diagnosis of both PR & GCI but he doesnt seem to want to give me higher at this point, maybe its because of the bad side effects I had a while back on the Medrol pack. Also I an feel the difference with the 10 mil, less shoulder pain but luckily I havent had the scalp pain in about six weeks & dread it coming back because that is just so pianfull. I thought that he would automatically put me on a higher dose but he didnt.

[PMRpro Ambassador]

He obviously doesn't really know what he's doing but yes, it is safe to increase the dose however you like. It is reducing that causes problems. But there is no point starting at a low dose and creeping up - the early doses are simply not enough.

However - it may well be that 10mg is enough to manage PMR but it will just take longer to achieve a good result. If it is GCA though, 10mg will NOT be enough.

[DorsetLady PMRGCAuk volunteer]

Hiya,

Still find it very strange that your GP suspecting you may have GCA, started you only at 5mg, and now has only increased you to 10mg. It sounds as if he is having 2nd thoughts about his initial diagnosis. You obviously stated your concerns, so did he elaborate on his decision? Is he going to refer you to a Rheumy?

Your concern about the scalp pain, which you say has gone away, should not only be the physical pain, but also what else it might indicate. As stated in responses to your previous post, you need to aware of the other scenarios it can cause.

He may have considered that you have PMR only, but I think you need to keep a close watch on your symptoms, and straight back to him, or A&E if you are worried about anything.

[Shastring in reply to DorsetLady]

I am under the care of a Rheumatologist, he is the one who prescribed the low does & confirmed both the PR & GCA, the blood work definitely confirmed the PR & the GCA by the symptoms only, I was now told I should have a biopsy as well as the full bone body scan. Im so scared of this biopsy but I guess that is what will definitely confirm the GCA. I would much rather take a high does of pred first before undergoing so many invasive test that could potentially cause me more problems. Doe sanyone here agree with this biopsy that is being ordered?

[HeronNS in reply to Shastring]

Oh dear, why didn't he order the biopsy to be performed before you had been taking pred for a while? Sigh. Methinks this specialist needs to crack open his textbooks again.

[DorsetLady PMRGCAuk volunteer in reply to Shastring]

Hi again,

I guess because your Rheumy wants a biopsy he's put you on a low dose. A higher one would remove any signs of GCA- which then gives a negative result, so a waste of time really.

Fortunately, or unfortunately whichever way you look at it, although I was put forward for a biopsy, it was decided that as I'd already lost sight in one eye it was deemed unnecessary. But those that have had it say it sounds much worse than it is!

Hope you some answers ASAP.

[PMRpro Ambassador in reply to Shastring]

The biopsy WON'T definitely confirm or exclude the possibility of GCA - less than half are positive even in cases of GCA. If it is positive it is 100% certain it is GCA, if it is negative it just means they didn't find any giant cells - they can skip areas of the blood vessel or the GCA may be elsewhere and not in the temporal artery. It is other blood vessels that supply the optic nerve and they may be affected even when the temporal artery isn't. Treatment should be based on the symptoms.

There also isn't any bloodwork that "confirms" PMR, it is also based on signs and symptoms and a raised ESR or CRP is just part of that.

[Shastring in reply to PMRpro]

Thank you for this info, yes my sedrate blood work was very high so they based their diagnosis on that along with the symptoms, my severe groin, legs, shoulders & neck pain. The pain that I had been getting in the back of my head & scalp icame & went over several months lasting for just a few day but was not like a headache, more painful to the touch in one area & I couldnt even lie on a pillow or comb my hair so that is how the Dr. decided on the diagnosis. I have a new appt on Fri & have postponed the biopsy & bone scan until I go over everything with my primary internist, not the Rheumatologist. I'm not sure who I should listen to but wont be surprised if he agrees with the other because most Dr.'s wont go against another.

[PMRpro Ambassador in reply to Shastring]

I hope your primary internist is up to speed on GCA - because those are classical symptoms. The scalp pain isn't so much a headache sometimes and fits with what you say.

Under the circumstances, if at any point you develop ANY visual symptoms do please go straight to the ER. Back of the head pain is associated with visual symptoms in GCA because that is the area where vision is processed.

This may help your doctor:

rcpe.ac.uk/sites/default/fi...

It is a paper written by top PMR/GCA specialists aimed at PCPs to help them identify and manage their patients.

[Celtic PMRGCAuk volunteer]

Shastring, as the others have said yes it's perfectly safe to increase the dose, in fact it is far safer for you to be on a higher dose than the original 5mg starting dose if both PMR and GCA are suspected! If I had your Dr I would be asking for referral to a rheumy for confirmation of the diagnosis and reassurance as to the way forward, especially with a suspicion of GCA lurking. Remain alert to any problems with your vision, and take yourself straight to A&E if in doubt.

[Celtic PMRGCAuk volunteer]

The BSR Guidelines for the Management of GCA recommend that on clinical suspicion of GCA patients should be given immediate high-dose glucocorticosteroid treatment with 40-60mg of Prednisolone daily, whilst at the same time initiating urgent referral for specialist evaluation and temporal artery biopsy.

"Urgent referral for specialist evaluation is suggested for all patients with GCA. We recommend that a TAB should be considered whenever a diagnosis of GCA is suspected. This should not delay the prompt institution of high-dose glucocorticosteroid therapy."

"Early TAB in all patients with suspected cranial GCA is desirable, since it is of prognostic as well as diagnostic importance. This should be performed preferably within 1 week of starting glucocorticosteroids. However, reports suggest that TAB may remain positive for 2-6 weeks following initiation of glucocorticosteroids, and glucocorticosteroids should not be delayed while awaiting TAB. It is the only specific diagnostic test routinely available to all hospital units."

New guidelines are about to be published in the very near future. I doubt the position will change on the recommendation to not delay treatment whilst awaiting biopsy because of the risk of vision loss. In an ideal world what we would like to see is that all patients suspected of having GCA will be fast-tracked immediately to a consultant rheumatologist.