prednison holy grain?

[Kaaswinkel]

Hi there,

On prednison for pmr for 5 years ( 71 years old) now with what looks like “ usual” hiccups of flares and jojoing prednison reading through our forum. but…still alive and kicking.

Currently working on moving from 3.75, my happy dose, to 3 mg with advise of the forum.

The oncologist ( breastcancer remission) urges me to get off prednison because of osteoporosis.

Yeah right, how easy is that!

I will ask my gp to refer me to a rheumatologist this time for “assessment and advise”.

My question to you all is: is there anybody out there that can say: “this is fantastic medication, I would strongly recommend this, it has helped me fantasticly.”

If so, I will, of course do my homework before seeing the rheumatologist.

thank you all. Stay strong. Alida.

[PMRpro Ambassador]

This low the osteoporosis claims are exaggerated. Have you had a dexascan at any point when you were on more? It is also VERY common for BC patients to be given bisphosphonates.

Good to hear from you with good news!

[Gimme in reply to PMRpro]

BC?

[DorsetLady PMRGCAuk volunteer in reply to Gimme]

Breast Cancer...

[Gimme in reply to DorsetLady]

Of course, thankyou.

[Kaaswinkel in reply to Gimme]

This oncologist initially promised me biphosphonates for my ex cancer as indeed is common practise in new zealand, i already had 1 lot given to me when i lived in nz, now in netherlands.

Indeed me happy because good for the cancer, good for my bones. But…..

When he realised later i was taking prednison for pmr ( yes 300/ 3.75) he changed his mind and refused me biphosphonates.

I now need to go through the whole nonsense of seeing a rheumatologist or endocrinologist for “ reassessment.” Waste of time and taxpayers money indeed.

That s why I asked about “ any great experiences with anything else for pmr than steroids.” Just to please the oncologist which of course is absoluut nonsense, because i doubt whether there is… yes I am angry.

And yes i have seen dr dasgupta s talk re low dosis of prednison and the fuss that is made about it by the medics.

So any other wonderdrug on offer for pmr??? Thanks.

[PMRpro Ambassador in reply to Kaaswinkel]

"When he realised later i was taking prednison for pmr ( yes 300/ 3.75) he changed his mind and refused me biphosphonates."

What on earth was he thinking of? In the rest of the world you can't persuade them not to dish out the two together!!

Tocilizumab works nicely for PMR and Kevzara has recently been approved for PMR specifically. But I don't know if the EU as a whole has.

[Kaaswinkel in reply to PMRpro]

Jolly good, thank you. I will do my homework before I see the rheumatologist. But I got the feeeling that I stick with pred for a while!!

[piglette]

With PMR I have a choice to live a reasonable pain free life with steroids or spend a miserable life without them. Do doctors really believe we are taking steroids for the fun of it?

[Kaaswinkel in reply to piglette]

Yes, I went to my GP who agreed with “ us”, raised her eyebrows and shrugged her shoulders and referred me to public hospital for infuus bone strengthening medication. And yes she also was nt “ too happy” about this man s attitude.

Never mind I have learned my lesson (again) : don t expect too much of the medics and overal: get anything in writing, then the change of mind thing is not so easy then.

[agingfeminist]

pred magically transformed me from being unable to move to a pain free mobile person. Of course the side effects of the pred are not fun for some of us. But I would have exited my life within the week if pred hadn't come along...i was paralysed in the mornings and could barely move the rest of the day. Going to the loo was a nightmare.

[Sophiestree]

Do you know you definitely have osteoporosis? Via dexascan?How odd that a medic refuses to give you bone meds when all others I know of want you to take them whether you need them or not.

[Kaaswinkel]

personally I feel this doctor has “a slight problem” with his ego. I have to work out how I am going to get what I think I need without making him feel whatever he does nt want to face,

5 yrs ago had bonescan. Not briljant and ca treatment never helps our bones.