Any info help needed!

Hey everyone I've been suffering for almost two years new with on going pain, fatigue, bruising, loss of balance and many other symptoms I have been round in circles with the hospitals it's only recently I have been sent for different tests and I was wondering if there was anyone who knew of anything about the following things that have shown up and weather they could be related to a type of immune disorder, my bloods in the past have come back clear apart from a high liver profile but the recent ones have showed a positive lupus anticoagulant and a very low vitamin d level of 15, x rays of my hands have showed some juxta articular osteopenia and slight sclerosis of the s1 joints, ultrasound of both shoulders shows inflammation in the subacrominal bursa in both shoulders together with tendinosis of the supraspinatus tendon and partial thickness tear of the tendons in both. If there is anyone on here who knows the slightest thing of any of the above I'd be greatful if u'd comment the rheumatologist I'm under isn't saying to much and I just want to know why things could be showing, like tears in my shoulders when I don't do much due to pain I spend most my time indoors I lost my job to becoming unwell, I feel at a lost end and don't know where to turn.

6 Replies

oldestnewest
  • Hello

    Before I go any further, I am not a GP,Specialist or other Health Worker,

    You are advised, strongly to discuss the condition you have, the treatments and general care of your condition, with GP

    What I explain here is a general understanding of conditions I have understood over the years

    You can read about this condition on NHS CHOICES on the Internet, although again your GP will be giving support in the treatment of this condition

    I feel you know what this condition is and you may be looking for support

    This condition sounds like LUPIS (SLE)

    Treatments follow those of Arthritis with various exceptions.

    Possibly you will take Anti Inflamatory medications (NSID) they will reduce inflamation of the joints, Steriods will also be given at certain times, as will Immunosuppressents, of various types, they belong to the group DMARD and various medications of these groups may be tried. Cortosteroids may also be administered. The other medications may be given in the group -TNF (Biologics) these last two types of medications act as immunosuppressents to tone down the immune system.

    Many of the above will be prescribed at different times. Blood tests will be undertaken at regular periods.

    Most of the treatments are very similar to various types of Arthritis, so there are many people who use the same regimes of medications.

    Please forgive if I have overstated your condition, as I have mentioned I am no GP.

    All I can really say if you need advice, support or a little understanding you know where to come, I wish you luck and all

    I can say is I have been on many of the drugs mentioned above now for thirty years so I do understand the pains you may be going through at this time. If you need support you now know where to find it.

    All the very best, We may be able to discuss treatments if required later

    BOB

  • Hey Bob thanks ever so much for taking the time to respond to my post, I have gathered for sometime now that I may be suffering with some form of immune disorder ie lupus, I haven't had much support from either my gp or local hospital and that's why I have joined here just to see if I can get any insight on my arising symptoms and results, I just hope that I can get to the bottom of it all and get on the right pathway to having the treatments and help I deserve, sorry to hear you've been on medication all those years. It's nice to know there is somebody willing to give support on here thanks again :). Kate

  • Sclerosis of the SI joints would have me asking some serious questions about spondyloarthritis, and in particular Ankylosing spondylitis (sclerosis and sacroiliitis are the main feattures required for this diagnosis). This is not something that most rheumatologists have a lot of experience in, so well worth asking if you could be checked out by a rheumatologist with an interest in spondyloarthropathy. A lot of docs still think its rare in women, but its at least a one to 3 ratio, possibly closer to 1 to 2, so that doesn't really make it rare, just slightly less. Lupus anticoagulant doesn't necessarily mean systemic lupus (SLE), but worth making sure you get those blood tests done again in a year or so to see if anything has changed.

  • just read your post again - spondyloarthritis is inflammatory spinal arthritis, but along with that people frequently get widespread enthesitis. Enthesitis is inflammation where tendons join onto bone - you seem to have a lot of that going on. You definitely do need a second opinion from an ankylosing spondylitis/spondyloarthritis (AS) specialist rheumatologist or to be seen at an AS clinic. Check out the information on the National Ankylosing Spondylitis Society website (www.nass.co.uk)

  • Hi thanks for responding to my post I wasn't aware that Rheumys were not fully experienced with all conditions ect I have done abit of research on sclerosis but think you are right on saying I need to see one who does deal with it. Also is there a reason why a lupus anticoagulant doesn't equate to a diagnoses of lupus? In all honesty I don't even know what a positive of it is or means. I will def check out the website link u have left on AS..... Kate

  • I don't know too much about your results but do notice that your Vit D level is very low and you may need injections to get it higher. It can cause no end of problems being that low, including pain, arthritis, etc. I would ask your doctor about it or Google it.

    Good luck.

    Karen

You may also like...