Is this really how LUPUS patients are treated??

Hi Guys. So after my previous post of discovering DVT (which is now pain free and dispersed) and 8 days in hospital, which led to a diagnosis of SLE, I was then discharged.

I was discharged before the results for 4 of my blood results returned (Anti Cardiolipin Abs, Thrombophilia Screen, Lupus Anticoag and B2 Glycoprotein) and told that they would return this week and I would be given an urgent Haematology and Rheumatology appointment for this week. I am yet to receive an appointment for Rheumatology but my Haematology appointment came through yesterday and it for June 4th 2015!!!

I'm not fully sure what the haemotology appointment is for but what the hell am I suppose to do until then? If I need treatment and the doctors are being real about the seriousness of my Lupus, why are they happy to wait for treatment to begin? Also, if this is the delay for Haematology then how long will I have to wait for Rheumatology?

The hospital discharged me with daily Clexane injections at 97.5ml, in which they have only given me 20 syringes of. Am I expected to continue with these injections until I am seen?

What has annoyed me most is that in 29 days my husband and I are due to travel for 5 months and as I feel completely fit and healthy at the minute, I am now concerned that we are going to have to postpone my trip just so the healthcare system can fit me in, which is going to have implications for our finances, our jobs and living situation (we rented our home to tenants).

I'm only starting my Lupus journey and frustration is already setting in. For others who have been battling this illness for a longer period or with more severe symptoms, I can only try and empathise.

Is this a common experience of Lupus patients??? Have others been diagnosed without all of their results returning, as I find this strange practice??

Any advice on any of my questions and how to move things forward would be much appreciated!!

:)

6 Replies

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  • Have you tried phoning your hospital and explaining to haematology and rheumatology your situation regarding travel plans yet? I have a very systemic type of RA rather than Lupus but have so far managed to cajole appointments and fit family commitments and travel around my many hospital appointments. I have been lucky in this regard but also been very proactive.

    This may be the wrong advice but if you have already pestered and got nowhere I would say that the psychological and physical benefits of travelling might well be more important than the benefits of cancelling in order to attend? Unfortunately SLR and RA are both chronic and fluctuating diseases and this is one of many difficulties we are faced with when trying to plan our lives in the face of much uncertainty - whether with health, work, holidays or medications.

    I don't know about diagnosing without all the blood results but I do know that getting a diagnosis based on signs and symptoms rather than on blood test results is good because things don't always show up in the blood with autoimmunity.

    Made sure your declare your diagnosis with travel insurance because if anything does go wrong with your health you don't want to be faced with enormous healthcare bills.

  • I assume some of those four tests were positive. That and a DVT would indicate they are thinking you also have antiphospholipid syndrome or sticky blood. Hemotologist manage this, even though many people with lupus also have APS. There is a good Hughes syndrome (APS) group here. Lupus usually involves a lot of doctors, since it can effect a lot of different parts of the body. It does make it more of a pain going off to all these different doctors, but do take care of yourself. Not to scare you but things can go wrong. Be especially careful of the sun, and to pace yourself and not get too tired, even if you feel good now.

  • June 4th would be deemed as an urgent appointment, normally with the nhs these days it's up to 6months for appointments. Have you spoken to your GP and explained your travel arrangements? They may be able to push to get you an earlier appointment or may even be able to prescribe medication for you. You will need to see them anyway to see if you need more injections.

    I can only presume you need to see haematology because you had a DVT, the medication I think, is to help stop more blood clots.

    The rheumatologist oversees someone with lupus and gets you to see various other specialists relevant to your condition and he gets all the paperwork back to him.

    It does take a while to into the system but once on the books you will get regular appointments.

    I too was. Diagnosed after a spell in hospital And was told I would get an appointment as an outpatient. I was lucky enough to have private medical insurance and within two weeks was seeing a rheumatologist he tested, diagnosed and started medication straight away. Once this settled and we discussed that I would need to see him on a regular basis (medical insurance don't pay out forever) I then went to the gp and asked them to refer me to see him on the nhs. It worked! Incidentally the original nhs appointment came through 4months later.

    Good luck, I hope you get sorted soon and can begin your travel plans as arranged.

  • Hello. You've had some helpful replies already, so all I will say is that I had to wait just over 5 months for my first NHS appointment, following bloods and a diagnosis of lupus from my GP. I was extremely lucky that my husband has private health care for us with his job and so I got to see a private Rheumatologist 3 weeks after the GP told me what I had. The private appt. was 30 mins long, he confirmed the diagnosis and have me a prescription for 2x200mg Hydroxychloroquine a day. To be honest I was quite unwell by then and I'm not sure how bad it would have got if I had had to wait the 5 months to start Hydroxychloroquine from the NHS appt. The private health care will not monitor a chronic condition so I have been under NHS care ever since. Is it something you could consider, i.e. a one-off private appt.? I know others on this site have gone down that route when desperate. If you google the specialist you needs with your address/postcode you will find lupus specialists in your area. I wish you well.

  • Hi, I agree with some of your replies it does look like they have tested you for APS. it may be that if this has come back positive then they will have to test your blood 12 weeks after the first. If both are positive they will diagnose APS. Just ask your doctor why the long wait. It is very nerve racking, I remember it well but if they havent explained the need to wait you must find out for your own peace of mind.

    When you see the haematologist put all the questions you can think of. I found them excellent and they made a good deal of sense.

    Good luck but do ask questions of the medical community. Even if you feel it a pain it will be worth it.

  • I all. Many thanks for your help. I have managed to get my appointment pushed forward to April 16th so fingers crossed they will be able to answer a few of my questions sooner rather than later. Love the support :)

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