Undiagnosed autoimmune disease

Hello

I am interested to know whether versus arthritis is specifically for arthritis sufferers or whether it is a good place to come for information on other autoimmune diseases. I have been suffering with an inflammatory disease since January but unfortunately I have not had a confirmed diagnosis.

Comments

  • Poppyjane
    Poppyjane Moderator Posts: 198

    Dear Elwyn

    Welcome to the online community, you have come to a good place for information and a great deal more.

    You say that you have been suffering for nearly a year with an inflammatory disease but as yet have not had a confirmed diagnosis. Many of us have experienced considerable delays in access to consultants clinics and I hope it will not be too long before you have the opportunity to explore your symptoms with an expert. Once this happens you will be able to manage your symptoms and pain relief with a greater awareness of the disease.

    Meanwhile I attach a link to an area that describes auto immune disease

    Lupus (SLE) | Causes, symptoms, treatment | Versus Arthritis

    I mentioned above that the community offers a great deal more than just information, so please take some time to browse the web site and I am sure there are numbers of members who will be happy to share their experiences and offer support to you.

    We look forward to hearing from you

    Jane

  • Anna
    Anna Moderator Posts: 326

    Hi @Elwyn ,

    I notice that you’ve written to the Helpline Team but unfortunately they are out of the office till 4th January.

    Versus Arthritis is for anyone who lives with any form of arthritis. This includes osteo, rheumatoid, psoriatic arthritis as well as lupus. There are other forms of the disease too and they all come under the umbrella of autoimmune diseases.

    Are you still undergoing tests for a diagnosis? Once you know what your diagnosis is, you can start doing some research on your condition, and I’m sure members of the online community will be pleased to share their experiences with you.

    Meanwhile, have a look at the Versus Arthritis general page on different forms of arthritis and conditions that are similar to arthritis:


    Best wishes,

    Anna : )

  • Elwyn
    Elwyn Member Posts: 3

    Hi Jane and Anna.

    Thank you for your replies, I have had numerous investigations/tests/scans and Arteritis was initially suspected. I have been very satisfied with the care I have received, and my doctors have been brilliant but I am obviously disappointed that they are still unable to confirm an exact diagnosis although I do realise how difficult it must be with such a complex area of medicine.

    I initially sought help when experiencing severe pain and weakness in my legs and after seeing three different doctors was sent for a blood test. I was contacted the same day by a doctor who informed me that my CRP level was 337 (which at the time meant nothing to me) and that I should get straight to hospital. 

    I spent two days having various tests and was then put under the care of a rheumatology specialist who initially prescribed 30mg of Prednisolone to see if I would respond to the treatment.

    My pain and weakness did not improve over the following two to three weeks and I was struggling to walk. I was being seen weekly at my local hospital and it was decided that I should have a PET scan which indicated that I could be suffering with inflammation in my arteries but was not conclusive. By this time I was getting terrible pain in my arms and neck also and bad headaches on a daily basis. At this point I was taking paracetomol and Tramadol at the maximum dose to cope with the pain.

    I was then started on 60mg of Prednisolone and 20mg of Methotrexate and the pain slowly started to reduce in severity and my mobility started to improve to the point where I am now pain free and able to function normally except for extreme tiredness especially after any physical activity. I am currently taking 6mg Prednisolone and still taking 20mg Methotrexate which I understand I will probably have to take for many more months and possibly on a permanent basis but am hopeful that at some point in the future I can come off medication completely and maybe get a confirmed diagnosis!

    So that is my story so far, I would be interested to know if anyone has had a very similar experience to me.

    Kind regards

    Elwyn

  • Anna
    Anna Moderator Posts: 326

    Hi @Elwyn

    That is a very interesting and intriguing story! As you say, inflammatory diseases such as arthritis can be very complex and it can take quite a while for a firm diagnosis to be reached and then for the right medication to be sorted out for you. It would be interesting to hear if other members have had similar experiences.

    The fatigue you mention could be due to the disease itself or a side effect from the medication. You might be interested to read the Versus Arthritis page on fatigue which has some useful suggestions on how to help yourself:

    Do keep in touch and let us know how you’re getting on, and if you feel like a bit of distraction, you might like to have a look round the different forums (listed on the right) and join in whenever you like.

    Anna : )

  • Hi Elwyn

    Thanks for you post to the Helpline. Very broadly if your inflammatory condition has any musculoskeletal components, (such as mobility problems, joint pain, skeletal or muscle pain / fatigue) then do try us. If your diagnosis journey focuses on rheumatology, then it's us. If you are still unsure, why not ring us on our freephone 0800 5200 520 9am - 8pm Mon-Fri and we may be able to clarify things more quickly.

    I'm attaching our general information on arthritis, which has some useful pointers in it.

    Arthritis | Causes, symptoms, treatment | Versus Arthritis

    I hope you do consider ringing us, as it may save you some time and we are good listeners.

    Kind regards

    Guy

    Helpline Team