Raised PV levels: Hi, this is my first post on here... - PMRGCAuk

PMRGCAuk

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Raised PV levels

Brown-eyes
Brown-eyes

Hi, this is my first post on here but I have been following all the very helpful posts since being diagnosed with PMR in March 2016, so thankyou to everyone involved.

Basically, I'm now at 6mg Pred and still trying to taper but continue to have raised PV levels, they apparently haven't really changed much since diagnosis. Any ideas or advice would be great. Thankyou x

9 Replies

The point is ( and always is) how do you feel in yourself?

A specialist needs to explain this blood result to you and if necessary, commission more tests. If you are like me, you have probably been worrying yourself sick exploring the Internet. Nobody here can do anything other than guess and you can do this yourself. Hope it just turns out to be a quirk in you.

Thankyou so much for your reply and you are of course right, I have been worrying and doing exactly what you say! My Doctor seems pretty unphased by it, so I guess I have to stop worrying 🤔 It's so difficult when you feel awful some days and not so bad others, to be consistent, nightmare! Thanks again x

PMRpro
PMRproAmbassador

Sounds as if it may your "normal" level. There won't be many people on the forum working on PV levels instead of ESR though. Are you in Scotland?

Brown-eyes
Brown-eyes in reply to PMRpro

Thanks for your reply and apologies for the delayed response, been to the dentist today 😔 I am indeed in Scotland and that's encouraging to hear that it could be normal! I have to say, my GP doesn't seem unduly worried, so I should maybe do the same! As you know, it's a long, hard slog and sometimes it's hard to see the light at the end of the tunnel. Thanks again for all your help and advice on this forum, it is invaluable to so many of us x

PMRpro
PMRproAmbassador in reply to Brown-eyes

Are you in contact with PMRGCA Scotland

pmrandgca.org.uk/

and they have support groups in various places.

Brown-eyes
Brown-eyes in reply to PMRpro

No, I'm not in touch with them, I keep thinking I'm going to get through it soon........some sharing would probably be helpful at this point though. Thanks again for your help.

PMRpro
PMRproAmbassador in reply to Brown-eyes

PMR isn't a short term problem - not like a cold. It is likely to be at least 2 years - whatever your doctor told you the median duration of pred for PMR is 5.9 years.

Hi Brown-eyes, the others are far more knowledgeable than I, regarding levels and such....

..but Hey! I have sunflowers for you🌻🌼🌻🌼🌻

Hope u get answers soon, Jerri

Thankyou very much x

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