Lupus and PMR any Link

I have Lupus, APS, Hashimotos and sjrogens

My father (83) had a sudden onset of crazy symptoms and has been hospitalised for a month with a CRP of 224 and ESR off the scale, he has been so ill he has lost 32 lbs in weight in 1 month. All autoimmune profiles are negative and they have diagnosed him with Polymyalgia Rheumatica. Hes now been on steroids 20mg pred for 2 weeks and his CRP is down to 46

So my question is ....... is this also an Autoimmune Disease and could my father be the link to my Autoimmune problems genetically?

14 Replies

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  • Hi riannabri,

    Polymyalgia rheumatica is an autoimmune condition. You can learn more about it at arthritisresearchuk.org/art...

    PMRpro is one of our resident experts on this condition.

    It is difficult to say whether this could definitely be the genetic link to your autoimmune conditions. Certainly, studies have shown that when someone has an autoimmune condition their close family members are also at an increased risk of developing one. It is important to bear in mind that these conditions are very complicated with many genes involved and do require an environmental trigger. Even in identical twins where one has SLE, only in 25% of cases will the other twin also develop it.

  • HI Paul

    The link does not work

  • I've now edited my comment so it is working for you.

  • PMR is very probably an autoimmune vasculitis although there is some dispute amongst the experts as to whether the evidence is strong enough to say that 100%.

    I have to say - with results like that, giant cell arteritis, a large vessel vaculitis sounds more likely. The treatment is the same though unless there are visual symptoms in which case the dose of pred is much higher.

  • Hi. Would you mind telling me a bit more about your father's symptoms please as it sounds similar to my nan who is getting nowhere with her gp?

    Thanks.

  • Of Course - It was sudden onset, We noticed he was off his food and kind of out of sorts and very sleepy and then things escalated really quickly so his blood test showed a very high CRP (224) and high ESR he was running high temperatures could not swallow and had hip pain, they admitted him to hospital ran numerous test cancer/immune profiles etc. We are now 5 weeks in and hes still in hospital he is on steroids 20mg Prednisolone and his CRP is down to 46 and ESR lowered but he has lost 32 lbs and gone down hill so rapidly, mentally he's a mess as its so hard for an 83 year old to comprehend what is happening.

    We are now trying to get him home with a full health package in place but hes gone really angry, wont eat refusing showers, meds etc But I know if we can get him home things will improve

    Before this he was the happiest man ever, he woke up singing and we laughed all day but within 6 weeks I dont know how we are going to get him back ..... Its a very worrying time as I am so ill with Lupus etc and disabled and trying to arrange all of his care

    xx

  • It really isn't typical of PMR - but it does sound not untypical of cerebral vasculitis. Have they considered that? I believe they use other drugs with that that aren't usually used in GCA.

    Or are they playing the age card?

  • I will have to ask, I am in contact with them daily by email and I will definitely ask them to look at Cerebral vasculitis - Could you advise how I ask them to test or diagnose this

  • The rheumatologists are the place to start asking - but there may be a vasculitis specialist. Not vascular, vasculitis...

    And there is a vasculitis forum on this site - with very good advice and experience.

    healthunlocked.com/vasculit...

  • After 6 weeks with my poor dad still in hospital he has a 42 lb weightloss and is so ill with pain, now bed bound all systems closing down and the finally saw a rhematologist and he says he does not have Polymyalgia Rheumatica. So what the heck could be causing a CRP of 224 and a ESR ?

    I told them I wanted them to Check out GCA/TA/ vasculitis - they are doing a PET scan, would this show any of these conditions? as I know nothing about this condition whatsoever

  • The PET scan won't show an awful lot if he is on pred still. They usually like patients to get down to 5mg before doing one - it suppresses the inflammation enough to affect the results.

    Whatever it is I think it is rather more serious than "just" PMR I'm afraid.

  • Can you believe they actually upped his dose to 40mg Pred 3 days before his PET - Do you have any papers or links that I can use to say They usually like patients to get down to 5mg before doing one - it suppresses the inflammation enough to affect the results.

    As surely this 40mg dose could give a negative result?

  • I would think it may do. My comment was based on what rheumatologists have asked patients to do before doing a PET scan.

    This:

    ncbi.nlm.nih.gov/pmc/articl...

    says "18F-FDG PET/CT can detect the extent and activity of large-vessel vasculitis in untreated patients and is unreliable in diagnosing vasculitis in patients on steroids."

    and "18F-FDG PET/CT cannot be used to diagnose vasculitis in patients on steroids/immunosuppressants and there is not enough evidence to support its use as a surrogate marker of disease activity, during follow-up."

    They don't quote a dose - but 40mg would interfere.

    ncbi.nlm.nih.gov/pmc/articl...

    discusses the use of PET imaging in polymyalgia rheumatica but they don't comment specifically about interference of corticosteroids. What they do say is that it shows the response to treatment after 3 months on steroids - but obviously to do that they must have a baseline. The mention quite clearly that there is no justification of the cost of PET scanning to monitor disease response as it is paralleled by the blood markers of ESR and CRP:

    "Repetitive PET scintigraphy after 3 months of steroid treatment resulted in a decrease of TVS and a lower intensity of FDG uptake in shoulders, hips, and spinous process. At 3 months, all but two patients had significantly decreased laboratory parameters of inflammation. This decrease of FDG uptake probably reflects a lower disease activity, but sedimentation rate and CRP levels, which are much cheaper to perform, reflect the same. So this does not justify a repeat PET scan."

    To me this all says that doing a PET scan at this stage isn't necessarily going to show vasculitis/PMR and certainly not at the level it was originally. But maybe they know something I don't.

    Now had they done it when he was admitted...

  • Thank you So much this is just the kind of information that I needed x

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