No Treatment?!

[LeanneN]

Hi,

I’m new here as I wasn’t sure this was the right group but I’m looking for some suggestions on what I can do.

I’ve been having a lot of hospital tests to understand why I have chest, black hands on occasion, sudden breathlessnes and many other symptoms. l was told by Dr Griffiths at Newcastle’s Freeman hospital that I had sticky blood and at the time I didn’t understand what that meant. She mentioned that if I continued to have symptoms I’d be treated with hydrochloroquine.

Sadly I had to move and go through the whole process of referral and more tests. All the while my chest pain spreading, becoming more constant, and developing a cough. I had a chest scan that didn’t show any clots. The rhumatologist wrote to my GP saying oral HRT should be stopped in light of the presence of 2 anticoagulant antibodies. However no blood thinning treatment or hydroxycholoroquine was offered. Worse I was discharged because my joints are not permantly inflammed despite at times being unable to lift cups or hold pens.

I’m worried that the doctor in question who happened to be based in the Lupus clinc at Guy’s is not doing the right thing. It seems as if despite ongoing pain and problems I have to wait for an embolism to occur before I get any treatment? I find this shocking and risky.

I was wondering what I can do? I also have pernicious anaemia and probably a form of ANCA vasculitis and/or a hint of Lupus.

Sadly my confidence in Guy’s hospital doctors has really lowered. Many of the staff doing the tests wondered why I wasn’t under a cardiologist and not on warfarin and it makes me feel that cut backs are to blame for non treatment and discharge without any help.

[MaryF Administrator]

HI and welcome, yes you are in the right group. Clearly you have fallen through the cracks in the services you should be receiving Do you have any old paperwork from Newcastle about your diagnosis of Sticky Blood, which is of course Hughes Syndrome/APS. If I were you I would ring that doctor or their PA to copies of useful letters. The anticoagulation would not be offered unless you had had a clot. Regarding your joints, many have intermittent problems with this, and many of us have more than one disease.

I think you need to write a stiff and concise letter to the unit at Guys copying your GP in, (hoping they are helpful), and asking to be urgently re referred. (Send a copy to PALS at that hospital).

I would attend any new appointment with your most trusted and articulate, friend, neighbour, colleague or relative with you. Write out your history in bullet points, and your symptoms, so you are absolutely prepared. In the meantime, you could have a private appointment at London Bridge Hospital, (The London Lupus Centre). A lot of us have done this to get our care back on track. It is not uncommon for us lot to have low Vit D, B12, Folate and Ferritin, which in your case has probably been picked up, some of us also order our own Thyroid tests, as the main test or tests done in the hospital or with the GP are usually not detailed enough.

You have been badly let down, and you are not the only one, hopefully you can turn that corner now and get your appropriate care back on track.

MaryF

[lupus-support1 Administrator]

I am truly shocked to read your description. As a matter of completeness, you should have been referred to a cardiologist, for routine tests and a CT scan. There are many reasons for breathlessness. For example, pleurisy of which there are 2 types: dry and wet ie lungs filled with water. Both are common in SLE & I have had both. I happened to mention to my GP that I had a cough at night when I went to bed: I had pleurisy. Has anyone recommended a chest x-ray?

Autoimmune conditions can cause a multitude of symptoms and therefore you should be seeing a specialist who has a better understanding. You have this right!

I don't understand why there is a reluctance to prescribe hydroxychloroquine (Plaquenil), an anti malarial with a mild blood thinning property, which has positive benefits for fatigue, joint pain etc. However, I am not a medical doctor but to leave a patient suffering, until s/he has a major incident, cannot make sense. Find another specialist & make a complain to PALS as Mary suggests.

With good wishes,

Ros

PS If you are not seeing a specialist for pernicious anaemia, you should.