Letter from my Consultant

Hello

I received a letter from my Consultant today following my diagnosis on 19th Feb.

There is some jargon in it I don't fully understand, I could ring the helpline but thought it would be quicker to ask the more experienced people on this site.

What does an "elevated acute phase response with a plasma of 1.85 mean????? Is it to do with inflammation levels? He is also says he "thinks" I have RA.....

Sorry if I'm being a bit dumb and if this question is not appropriate, I will contact his Secretary for clarification, but I'm a bit baffled.

Thank you

Maddie

23 Replies

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  • Hi, well I think this means simply that the level of inflammation caused by something is raised in your blood. It can do this due to infection, injury and things like RA. The doc might want more information such as X-rays or ultrasound before he hangs his hat on a diagnosis for you. There are lots of things that can cause inflammation so he will probably check you clinically by looking at your joints, do blood test like the ones you have had which say it looks like you have inflammation before he will give you a definite diagnosis. The " acute phase" thing is generally, say you cut yourself the wound will get sore, hot and swollen as your body tries to fight any bacteria from getting into the body through the wound and then repair itself by flushing in lots of cells to help healing and it's similar in RA. So hope this helps a bit and isn't too simplistic. It does show that he is further down the path to your diagnosis. Hang on in there! Love Axx

  • Oh and DO call the helpline they are brilliant and helped me so much xxx

  • Hi Allanah

    Thank you for your quick reply and explaining it in a way I understand....dohhhh!! :)

    What I can't fully understand is why I'm being given drugs I don't really want to take, when he "thinks" it's RA....I know it's a long process and best to attack it in the early stages though and the ultrasound did show inflammation in my right hand.

    Hope you are well and by the way are you going to Glastonbury Festival this year?

    Thanks again

    Maddie xxx

  • He might only "think" its RA, but "know" its some kind of inflammatory arthritis. It would be worth asking your GP to find out more about what he is thinking though, to reassure you that there is something that needs treating sooner rather than later.

  • Thank you...Earthwitch

    I will make an appointment with my GP, she's been fairly good so far.

    Maddie xx

  • yes, I think it's just another aspect of how inflammation is detected in your body, so a bit like the ESR and CRP tests that are often done regularly. But I don't know about the levels, so no idea whether 1.85 is just above normal or high.

    Quite often consultants don't commit to a definite diagnosis at first as there's a lot of similarity between the different types of inflammatory arthritis, and hard to be 100% sure which you have. So don't worry too much about the "I think" you have RA. And sometimes it's only by seeing how you respond to the different drugs that they can be sure. Polly

  • Oh, just re-read what I'd said and maybe not clear...my assumption is that he's pretty sure you have inflammatory arthritis, but just "thinks" it's RA rather than AS or PsA etc etc.

  • Thank you Polly for your reply...what are AS and PSA?

    Maddie xx

  • Ankylosing spondylitis and Psoriatic arthritis .....

  • Ah ha....thanks Polly. Xx

  • Hi yeah, I think like Polly there are 200 types of arthritis and they are similar so one blood test result and seeing you is just starting to paint the picture for them and it would appear he is leaning towards Rhematoid version of arthritis for you. The medication will be to deal with your inflammation so from that point of view it will be helpful and when he comes to a conclusion with the rest of your tests he can look at further medication. I think it's great you r on the right path and they are king you seriously, which is a great tep forward. Be patient they will continue to find out a diagnosis but it does all seem positive to me!

    I didn't manage to get sorted for glasto due to my daughters gcse results but now it seems like her exams might be finished by hen so I have volunteered to help the amazing charity Attitude is everything, who I have supported for many years, and they get disabled people to go on the music platform, give info and check wristbands! Then u r free to party with them and go see other bands. Also going to Leeds festival with them this year. So ye I am excited! I am looking at bikes you can hire which work on rough ground to hire at the moment as Glasto s vast even with heir transport. But can't wait on summer, hope it's better than wet wet wet last year!! ( not the group, the rain!) r u going to any?

  • I've just googled "Attitude is Everything" I can't believe my daughter has'nt mentioned them, she's in her last year at Uni doing Deaf Studies I will tell her about them, what a fantastic thing to do Allanah.

    I don't live that far from Gladtonbury but no I'm not going this year will be watching every bit tho from the comfort of my sofa! I'm not going to any festivals this year but hoping to do some outdoor concerts, my daughter is going to the V Festival.

    I love Glastonbury don't go there often enough really, it had a real vibe about it and there are some really good shops there.

    Thank you again

    Maddie xxx

  • I went to vlast year, will be good with beyonce this year, I am seeing her in concert at Manchester yeah! When u r better next year we should go together, u will find the disabled sites brill, they even put your tent up for you and you get to us the platforms so u can see above the crowds, and we have great parties up there xx

  • That's a fab idea...my daughter will be soooo jealous she wants to see Beyonce, I was never a huge fan until I watched her at Glastonbury....she was AMAZING!!

    I really want to see Coldplay..my girls saw them last year I bought them tickets for Xmas, really like Ellie Goulding too! I love all types of music though.

    Maddie xx

  • Xx

  • think he must be uSing pv like my health authority. a rubbIsh test comapred with esR and crp.. but 1.85 is high. I HAVE HAD UP TO 1.9

  • eSR I think is erythrocytes sedimentation rate and crp, creatinine reactive protein, both tell you a mark for inflammation, can't remember if these r the exact words summer lol, brain fog...again!

  • pv is plasma viscosity 1.85 is high

  • my ha using pv.. my gp says its c. r. .a. p as a test !!

  • Hi Summer

    Thanks for replies....mmmm I'm confused I've been told 1.7 is normal...I will ring them to clarify just what it is!!!

    Not dismissing in any way what you're saying its not easy without you seeing the actual letter! :)

    Maddie xxx

  • did u get hold of them yet? interested to hear what they meant lol xx

  • Yes I did, the lovely and very patient Rhemy nurse rang me back....plasma velocity is basically shows how sticky your blood is and shows levels of inflammation, yes 1.85 is high but 1.72 is normal. The results were from bloods taken in Aug 12 when I was probably having a flare. She didn't say much about the sweats really and said that could be for a variety of reasons but to keep a log of side effects and maybe try the injections if things don't settle down in the future.

    Maddie xx

  • Hi Maddie

    I don't fully understand that sentence, but the plasma level could be referring to plasma viscosity (PV). Unfortunately we don't have any information on ranges, as different labs calculate things differently, but here is a link to a page about the PV test on the Lab Tests Online site, which may be of interest:

    labtestsonline.org.uk/under...

    Kind regards

    Victoria

    (NRAS Helpline)

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