No one will diagnose SLE and need some help

[christracey]

Hello, I hope some of you can help.

My partner suffers from all the major symptons of lupus (SLE) adn is curretnyl suffereing a 'flare'. She has had her symptoms on and off for the last 2-3 years.

She has gone to the doctors, as is under 'observation' with University Hospital Wales Cardiff Rheumatolgy dept Specialist. This supposed monitoring is not happening and she hasn't had her bloods taken in the last 3 months. The course of medicine they put her own was simply Anti-malaria tablets without any kind of monitoring.

In all the time since she first went to the hospital, nothing seems to have gone forward and it seems like she is totally on her own.

Can anyone help with any kind of suggestion? She has gone private when she was severely ill but this is not a long term solution.

Is there anyone out there that can help?

We want to get a diagnosis and obviously some help as the duty of care for her has been severely lacking!

[MargaretGail]

If you are on 3 monthly blood tests you would be expected to collect the blood forms from the doctor yourself and go get the samples taken, plus Antimalarials are the standard treatment for Lupus.

[misty14]

Hi Christracey

Sorry to read your partner is suffering a lot. Could she not phone Cardiff and ask for an appointment as she's in a flare?. Also anti malarial tablets don't require three monthly blood tests , other immunosuppressives do , could be why the blood tests aren't being done!. Good luckX

[lorac1]

Hi christracey. It is very frustrating and worrying when you feel that no one is helping you. I agree with others that antimalarials are the treatment of choice, and are used in the first instance unless symptoms are so severe that stronger medication is required. They don't require monitoring as the stronger medication does. UHW Wales seem to monitor patients 6monthly if symptoms are not severe, but have a helpline number in case you need advice in between appointments, they should have given it to you. Good luck!!!

[roubyroo]

Hi, it appears they are doing what they should even though you feel care is lacking. My young teenage daughter saw two Rheumatologists who were supposedly checking my daughter for lupus. After gp interference (due to their lack of help for me for many years) my daughter had blood taken by 1st rheumatologist who didn't do autoimmune or kidney function test (gp had lied about previous kidney function being normal) and 2nd rheumatologists

Didn't do blood tests at all and ignored photos and symptoms (lupus unit. London) My dx from London was retracted just prior to this due to gp also. My eldest daughter has just experienced a horrendous situation dueto deliberate ongoing lack of care regarding endocrine /thyroid issues.

It is very obvious when drs are deliberately Refusing care and causing physical harm.

Good luck with further treatment and be grateful there is actually some care available as I wouldn't wish my familys situation on my worst enemy.

[morgan244]

I have been diagnosed with SLE,Sjogrens and APLS since 1994. I live in Swansea, and had to go to St Thomas's to get my diagnosis.

I was prescribed anti-malarials, immunosuppresants, warfarin and other drugs, which have steadily increased as the years have gone on.

I still attend St Thomas hospital 3-6 monthly and my health board pay for it (that is how NHS funding works).

Phone your consultants secretary, if you do not know the name of your consultant then ask for the rheumatology secretary, and explain your situation. They may be able to speak to your consultant who may be able to speak to you or write to you or your GP. If there is a help-line why not phone that?

As far as blood tests are concerned, they are not usually required for anti-malarials unless the consultant has requested routine blood tests.

you should be having 6 monthly eye checks at an opticians; but check with your optician as they will know which medication needs eye checks.

Lupus usually takes 2-3 years for an absolute diagnosis to be made; if blood tests do not show any of the 'obvious' results- this is often the case.

If your GP is not supportive ask to see another Dr in the practice; there is usually one Dr in the surgery who deals with patients with 'chronic' conditions who has training for this.

You do not actually say she has had a firm diagnosis of Lupus or any auto-immune condition, if she has then things should be smoother to manage; otherwise it is useful for a diary to be kept where all the signs and symptoms are written down so the Dr can read or be told about them when you have an appointment.

You do have to be pro-active and be able to tell your Dr when and what has been happening to you; what made it happen, what made it worse or better.

[sarahsch]

Hi. I don't normally reply when so many have said the same thing , but in this case I was offended by JohnFM's reply.

The fact that you are asking these questions indicates there has been a failure with your parteners care, a failure of communication. Telling you just to 'put-up' & let the hospital do its thing is neither helpful nor acceptable.

Firstly re: sle - you don't need a firm diagnosis to get help. Diagnosis is very very difficult & in recognising this, & to stop unnecessary suffering, Drs will sometimes try low risk treatments such as the antimalarial drug hydroxychloroquine sulphate.

Secondly, Hydroxy can take along time before it is effective. I have heard quoted 6 weeks (ave) , 3 months, but latest research suggests you need to take it at least 1 year before you can be sure it isn't going to work.

So why perseve? Because if it is sle your partener will be on medication for the rest of her life. Hydroxy is relatively low risk so its worth giving it every chance. This doesn't means she has to continue to suffer in flare (and believe me I know how agonising that can be). She should still be able to receive support with pain relief & antiinflammatory medication from you GP.

I really hope this helps as I can see you are only trying to help your partener & that is commendable.

[Paul_Howard Partner LUPUS UK]

Has your partner been given any diagnosis? Or are they just trialing this treatment to see if it helps ease her symptoms?