SLE

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I was diagnosed with lupus 14 years ago which took almost 2 years and many, many blood tests to diagnose. At that time I was under the care of a Rheumatologist and a bowel specialist as I developed a very inflamed bowel due to the number of anti-inflammatory tablets I was taking. I have had to change my GP due to my moving house. I have had a very cool reception from my new GP over my symptoms. I am in the middle of a very bad flare up and booked an appointment as my pain medication isn't doing much to relieve my symptoms, and my chronic fatigue is unreal! I've had blood testsdone which have come back with a raised ESR and a CRP of 3.5. My new GP has said my CRP is within normal limits! I did not have a PV or ANA blood test which is something my old GP did as a matter of course to check the activity of  my lupus.  I have had blood test before with a raised ESR but a normal CRP and my specialist told me at that time that a normal CRP often presents in patients with SLE even during an active flare and a raised CRP is normally indicative as a possible infection in a normally healthy patient and isn't necessarily a factor in SLE. Has anyone else with lupus had normal CRP but raised ESR, and should I push for a PV and ANA blood test too. I think in my new area PV tests aren't done as a norm.  My new GP doesn't have my records going back as far as when my SLE was diagnosed and said she will have to request them. I haven't had any blood tests for quite a few years as the diagnosis had already been made and it isn't something that is miraculously cured. I don't want to feel like a fraud in front of my new GP and any suggestions would be most welcome.

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  • Posted

    Hi StephamieBrooke

    I am diagnosed with Polymyalgia Rheumatica...but i was initially diagnosed with lupus...because my ESR, CRP and ANA levels were high..but after being referred to a Rheumatologist he diagnosed me with PMR on my symptoms..and the fact that i did have the dsDNA gene which is a marker for lupus..so i think you should push for an ANA test and a dsDNA test...as for PV test excuse my ignorance i'm not sure what a PV test is.....

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    • Posted

      Hi Lillian. Thanks for your info. I've managed to track down one set of my medical records and I've got to write in requesting them and pay £50. I don't mind paying as hopefully, I can give my them my new GP. I'm still trying to track down my records from my old rheumatologist too. I was being tested by my rheumatologist for RA (Rheumatoid Arthritis) as he said I was showing all the classic symptoms, but apart from my ESR being raised, none of the other markers were.  This went on for months. I was referred to a bowel specialist by my rheumy because, what was severe bowel inflammation brought on by my anti inflammatory tablets was identified by my rheumy before any other tests, hence I had to stop taking them. My rheumy was brilliant and dealt with a lot of patients with auto immune diseases and knew all about other symptoms I presented him with. It was actually the specialist dealing with my bowel problem that hit the jackpot, so to speak in diagnosing Lupus as all the markers directing him to lupus a diagnosis in my blood were raised.  They were both great with me and I could discuss both my illness with both of them. Not once did they say discuss this with your rheumatologist, or discuss this with your bowel specialist. They both knew a lot about my condition and the best way to treat it etc. etc.  and we're quite happy to discuss anything that was worrying me. As you probably know we can get negative tests time and time again, then maybe only one marker raised. I'm going to plod on with gathering as much information as I can and hope my road isn't too long.  Sorry about the abbreviation on my blood tests. PV is plasma viscosity. Take care of yourself and keep taking the tablets!

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    • Posted

      Hi StephanieBrooke

      Very happy to to be if some help!...so pleased you tracked down some of your medical records.....hope the road is not too long before you obtain everything you need and there is an answer at the end of your journey.....my very best wishes to you...

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  • Posted

    Unfortunately a lot of docs don't understand that your bloid work can be normal and you still have active disease.

    Ask for a referral to a specialist who will understand better. It is your right to have a referral. Don't take no for an answer.

    Get in touch with Vasculitis uk who have a free helpline. Ask for advice on how to handke your gp.

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    • Posted

      Thank you for the advice Margaret. I have this morning rang around to try and track down my records from my old consultants. I have good news from the bmi hospital telling me they still have my records archived. The records clerk told me I was lucky as they normally dispose of them after 8-10 years. I have to write to request them and it will cost me £50. I'm willing to pay this just so I can present them to my new GP and tell her I'm not making it up. Just need to track one more consultant and see if they still have my records......fingers crossed I find them and they do. Will cost me again but it will be so worth it in the end. I felt so deflated after my GP visit yesterday, but today I'm picking myself up and concentrating on what I have to do/get so I don't end up in the same position I did 14 years ago. 

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