Where can I find the link to the Bristol Paper?

[damasio]

I want print it up to give to my rheumi this week. She is trying to make me submit to adding plaquenol because I am not tapering prednisone successfully.... ie fast enough.

[HeronNS]

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

This is on a list Patient forum:

patient.info/forums/discuss...

[damasio in reply to HeronNS]

Thank you HeronNS for the information.

[PMRpro Ambassador]

How have you been tapering? And why plaquenil? It doesn't feature in the guidelines:

rheumatology.org/Portals/0/...

Methotrexate and leflunomide are the most likely to help - my local rheumy says he has had good experiences with it and Prof Dasgupta has had very good results with leflunomide. But neither are guaranteed to work and both have their own side effects.

[damasio in reply to PMRpro]

Thank you. Pmpro. It took me 5 months to taper from 9 mg pred daily to 6 mg daily. I was never pain free. Then I flared about 1 month ago and the rheumy agreed that I go back up to 10mg daily together with dipyrone for a few days and then go back down again. Well. I didn't take the dipyrone but have stayed on the 1O mg. In 3 years i have never had raised CPR or ESR but this time the blood tests showed very high ferritin. Meantime I have developed total exhaustion, a sense of heaviness in both legs, oedema which I have had for some time, general weakness and shortness of breath.... In short - I am falling apart! My appointment is on Tuesday and she is going to insist that I do all the things I refused to - that is plaquenil ...she knows it is not in the treatment protocol but said to me that if they only worked by the list there would never be progress... Statins...which I will not take... Osteoporosis treatment....which I prefer not to take... Etc. Thank you for asking....sorry to have given such a lengthy response.

[HeronNS in reply to damasio]

I just looked up dipyrone and it's actually banned in some jurisdictions (like the US and much of Western Europe) because it can cause a life threatening blood disorder! Yikes.

What does the doctor think the high ferritin signifies in your case? I understand it does appear in some inflammatory diseases like RA.

[PMRpro Ambassador in reply to HeronNS]

It is an inflammation marker - just like ESR and CRP. It's the only thing I had had raised until recently!

[HeronNS in reply to PMRpro]

Mine was extremely low, which was taken as a lack of iron. Back to normal, so another thing which won't be tested for a year! Which makes me wonder, how can ferritin be used as an inflammation marker?

[damasio in reply to HeronNS]

I read that if high it indicates inflammation since it shouldnt be released into the blood unless there is inflammation or a malignancy.

[damasio]

Yes, thalesthemia I think. It is quite common in my neck of the woods- but the dipyrone is sold over the counter. No ptescription needed. About the ferritin I will ask the rheumy what she thinks when I see her this week. I didn't think to ask my gp about it.

[PMRpro Ambassador in reply to damasio]

I wonder why she chose it - it has no antiinflammatory effect, same as paracetamol.

[HeronNS in reply to damasio]

culturalsurvival.org/public...

[damasio in reply to HeronNS]

Wow! That’s some list!

[damasio]

I wondered about the dipyrone too since it does go for the liver. I know only pred relieves pmr pain.. About the ferritin...I checked my old lab tests and saw that some years ago ( before I developed PMR) the ferritin was very high...but the gp didn't say anything about it then. Perhaps if i had complained of pain he would have taken notice.It is interesting that neither you nor I had raised crp or esr but we both have raised ferritin.... I wonder whether there are others on the list with similar results...