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Discussion Starter · #1 ·
I finally went to see the GP when it became apparent that the letter from my consultant following my June appointment was not going to be forthcoming. (He had promised to write to let me know what the latest batch of blood tests showed.)

Anyway, he had written to my GP to say that the tests again showed positive for antiphospholipid antibody syndrome, ANA and anti-Ro antibodies but as the anti-DNA was negative, this was not considered to be lupus. (I have previously had a low positive result for anti-DNA on previous testing.)

So, the current situation is that I'm not being seen by anyone and for any ongoing issues I just have to rely on the GP (don't even have a named GP just a series of very nice locums!). At the moment I'm not taking anything - luckily I'm not having any joint pains at the moment. My main problem is my skin: I've got blistering red patches across my nose and under my eyes and around the collar area - the doc has prescribed steroid cream and oilatum in the bath for that. I'm also permanently exhausted and am anaemic - I took a course of iron tablets earlier in the year but they didn't have much effect and the next blood tests still showed me to be anaemic.

I'm not sure where to turn next to be honest. I know that all my troubles are really just niggles (my main time of real problems with whatever this is was when I was in my late teens when I was disabled and had liver and kidney failure and basically nearly died). It just seems to have left me with various bits and pieces wrong.

Does anyone know if I should a) be taking iron tablets all the time and b) if I should take a baby aspirin per day for the APS . . . I obviously have had no information from the docs on this. I'm not taking anything at all at the moment as I wanted to be sure that I wasn't causing the skin problems by anything I was taking.

Any thoughts and ideas would be welcome - especially tips from those in the UK who understand the NHS system!

Lily x:flowery:
 

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Hello Lily
I think this is a totally unsatisfactory state of affairs, unacceptable really. Obviously I can't say whether you have lupus or not but I can say categorically that the absence of ds- DNA antibodies does not mean a lupus diagnosis is excluded. I can also say that there is enough blood work there, blood work alone, to make lupus or very similar extremely probable. ANA, especially at a higher titre such as 160 or 320, anti Ro and anti phospholipids especially if they are there at a second testing, either anticardiolipins or the lupus anticoagulant.
There is also the anemia. What sort is it ? It might be immune anemia a lupus symptom which should improve as the disease is brought under control. There is no point taking iron pills if it isn't iron deficiency anemia, in fact I have read that it can be harmful

By the way the presence of anti phospholipid antibodies doesn't not mean a diagnosis of APS, but it is a criterion for a lupus diagnosis and might mean an increased risk of clotting events. Lupus symptoms come and go and aren't always exactly the same ones. The fact you don't have joint problems right now is unfortunate but you have had them in the past and ditto the liver and kidney problems even if we dont know what their cause was. I presume your liver and kidneys are OK at present

Then there's the skin. If that is lupus related then you definitely have lupus in some shape or form and it would be very weighty for a diagnosis. A good dermatologist might know what it is and a biopsy could prove it. By the way, it is rather unusual to have lupus skin right below the nose because it is shaded, although the upper lip can be badly affected.
Do you think it is worse after sun exposure, not necessarily straight after, or heat?
Do you feel in general worse after exposure to sun or even heat?
It's hard to draw conclusions from photos but have a look at the photo sites linked to in the sticky post at the top of this section. Meanwhile I would practise the strictest safe sun to see if it makes any difference. That would include wearing a broad spectrum screen with a UVA 5* rating everyday regardless of the weather.
Steroid creams can't be used long term and the oilatum is simply soothing.


I would be concerned that I was having a recurrence of lupus and that lack of timely treatment might result in worsening into very clear systemic disease. I would do all within my power to get some answers such as going to the private London Lupus Centre if there was no chance of a reliable second opinion in my area either on NHS or private
Plaquenil can be prescribed in cases like yours to see if it helps, when there is no other explanation for the symptoms but strong indications for lupus or another autoimmune connective tissue disease.
The fact that you aren't as unwell as you have been and not as unwell as other people is neither here nor there in my opinion. Sometimes it is a comforting thought especially if you have no option but to accept a situation, but it isn't a good reason for not taking action.
In fact that sort of reasoning, arguing things away, is one cause for diagnosis being delayed unnecessarily. I have heard plenty of sorry tales of people wishing they had been assertive sooner but never one from somebody who regretted making an all out effort.

I get so angry with these so called doctors. I must look out my Clare.T (TM) taser gun and get some zapping practice

Good luck

Clare
 

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Hello there,

I'm right with Clare on this one, I would have thought that those blood tests alone would be highly indicative of lupus and would be very concerned by that attitude. It is your health at stake here.

Katharine
 

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Hi

Hi Lily,

When I was having trouble getting to see someone else I wrote to the London Lupus Centre, they contacted me , and said that they would be more than happy to see me and just asked for a letter from my GP.

It would be worth sending them an e-mail?? I know you may have to travel but they are one of the best in the country, I am currently under City Hospital, Birmingham and I have to say they have been fantastic, it may also be worth contacting Professor Gordon there???

Hope this may be of some help to you, best wishes

Beci
x
 

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Hi

I don’t think I can add very much more than the others have, especially their sound advice. But I just wanted to say that I understand completely what you are going through and can appreciate the frustration caused by these doctors that seem insistent on not seeing what is right in front of their noses!

I have been going through the NHS mill for years now, firstly trying to get a diagnosis for Endometriosis which took over eleven years and now with the rash and all my other lovely symptoms.

I am going to take great pleasure in attending an appointment next week with my bowel consultant who told me I was suffering from IBS again! After being fobbed off for years with this diagnosis to be told it again, knowing that I have endo all over my bowels and now after my last op I have been told there is a mass the size of a football around my bowel. I wonder if he will call this IBS related?

My point is that these doctors may seem to think that they are always right, but it is time that they accepted that they are human and make mistakes, if only they could eat some humble pie, then maybe we would get a clear cut diagnosis and some actual help instead of faffing about!

Regards

Star
 

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Dear Lily,

The others have answered you admirably. In my opinion you need help. A more enlightened Consultant may well describe you as having a "lupus like illness" and treating you to try to help. My skin was dreadful before treatment.
Best of Luck.

x Lola
 

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Discussion Starter · #7 ·
Thanks so much for all your replies. I strongly suspect that it must be some 'lupus-like' condition and I would have thought that the bloodwork would point to that too (the last ANA titre that I know about was 640). I think I've come up aginst the fact that doctors don't like to undermine another doctor's diagnosis: I was diagnosed with juvenile rheum. arthritis in late teens by someone who is now an eminent rheumy in the UK - I now now that it was quite weird to have had kidney and liver failure as this is not usually associated with JRA so far as I'm aware (luckily I've not had further problems).

My skin is blistering and then not healing up in the area across my nose (not under) and over the top part of my cheeks, however, the GP said this wasn't anything to do with lupus? (It's certainly in the butterfly rash area although is not as extensive as the pictures online) My skin is also going mad across the upper chest area and on my scalp.

I'm concerned that the doctors have not been interested in the fact that I continue to be anaemic - they didn't even bother to prescribe iron tablets last time! When I had very active disease in my late teens (whatever it was!) I had to have several blood transfusions for anaemia.

Part of me would like to just get sorted out at the London clinic but I do feel absolutely exhausted by the prospect of more fighting. When I was in my mid-30s about 5 years ago or so I did get referred to the Miscarriage Clinic up in London and it was really hard to travel up there and back with a small child. I now live even further away and (thanks to the Miscarriage Clinic!) have another small child - I don't have any family or friends nearby who could help out with looking after her or picking my other child up from school and I don't think we can afford private medical care anyway at the moment. I know that seems really pathetic but I just feel too tired to take that on at the moment. Perhaps I should explore the dermatology route locally?

It's so good that I can come on here and run thoughts and ideas past you lovely people who understand what I'm talking about. Unfortunately even my husband thinks I'm just whingeing . . .:(

Lily x:bunny:
 

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Hi Lily,

On the road to diagnosis I gave up going to the doctor a few times. Each time I said I wasn't going back but some new symptom would spiral out of control. It took the right doctor to finally piece it all together. Don't give up. Ask your GP if he can refer you to a different Rheumatologist.

Take care,
Lazylegs
 
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