Possible SLE now but confused

[phoenix77]

Hi all,

so, I've seen Dr Karim twice now. the first lot of blood tests were sent to me (see below), and I'm waiting on the second set.

RDW = 15.1 (11.0-15.0)

White count = 14.8 (4-11)

Neutrophils = 10.4 (2.0-7.5)

APTT = 65.8 (23-35)

APTT ration 2.18 (0.76-1.17)

CRP 33 (<10)

Erythrocyte Sedimentation Rate (ESR) = 93 (1-10)

Beta 2 Glycoprotein 1 Abs was negative.

So at the appointment last week I asked if I had lupus ad he mentions it was indicated on the letter to my GP. He was a little cagey but said that the results above plus the positive anti dna antibodies indicated some lupus was present.

I'm still not sure if that is a lupus diagnosis or not. Work want to send my back to occupational health to see if I'm capable of doing my job, but without a firm (preferably written) diagnosis I don't know what to tell them.

I also have to start hydroxychloroquine ASAP which frightens me and the strength of one of the APS positives has made Dr Karmin say he is going to consult a colleague to debate putting me on warfarin or leaving it as aspirin and hydroxychloroquine (if I can bring myself to take it - I'm really scared).

I'm frightened and confused and feel very vulnerable right now.

[Lure2]

Sorry, but I do not understand why you are scared to be treated? Have you had one positive Kardiolipintest and now Beta2Glycoprotein1 negative? Ask for a copy of the letter to your GP!

I think it is positive that he will consult a College (an APS-Specialist probably) about your case. Please let us hear more what he decides to do. Tell us why you are frightened.Also tell him about the problems with your work. He must understand that.

It will be ok you will see!

Best wishes from Kerstin in Stockholm

[phoenix77 in reply to Lure2]

I've had the APS diagnosis for 10 years or just over. I'm confused as to whether I have a lupus diagnosis or not. It would be useful to have it in writing if I have but he left me confused. He said that judging from the ESR and CRP results, and the positive anti-dna antibodies, and my symptoms, there seems to be lupus involvement - what does that even mean?

I'm scared of the potential side effects of hydroxychloroquine. The possibility of retinal damage is terrifying to say the least but, more immediately worrying, is the things I've heard about the gastric effects.

[MaryF Administrator in reply to phoenix77]

Providing you are actually on 'Plaquenil' not a copy there is less likely to be a problem, and also regarding eyes, get tested before you start and have a yearly check up, my daughter is on the maximum dose and has been for years and so far is ok on it. MaryF

[phoenix77 in reply to MaryF]

It's not plaquenil it's quinoric. Does that make a huge difference?

[MaryF Administrator in reply to phoenix77]

The drug of choice for St Thomas' is Plaquenil!!!!

lupusuk.org.uk/plaquenil-av...

MaryF

[phoenix77 in reply to MaryF]

Oh, dear. Dr Karim just wrote Hydroxychloroquine on the prescription so I got what I was given. I guess I need to take it and see what happens, at least I know that I can ask him to be more specific if I need to change it.

I'm really scared of this drug but the pain is getting worse and the fatigue is getting to feel like permanent brain fog so I'm going to take the first one tonight.

Wish me luck. I'll update this thread in a couple of days (or sooner if there is anything to report).

[MaryF Administrator in reply to phoenix77]

If you are not happy, do ring up the clinic, we can't give specific medical advice, but we all do try and help each other on here. MaryF

[phoenix77 in reply to MaryF]

I know, and you have kept me sane on more than one occasion. I'm so glad I found this forum, you are all lovely people (and, despite not being medical professionals, clearly often know more than the doctors)

[MaryF Administrator in reply to phoenix77]

Thank you, myself and other two hard working Admins appreciate the nice feedback, we have had some great feedback of late including beyond the forum, what we do having been noticed, which is great, we are literally all in this together. MaryF

[AnnNY]

You need a certain amount of symptoms to be diagnosed as having lupus, so it might mean your blood work looks like lupus, but you don't have enough symptoms to make it an absolutely positive diagnosis. Hydroxychloroquine is used in both illness. If you have almost lupus, it can keep it from getting worse, while also helping with the APS.

Some people get certainty in their diagnoses, and some of us are all over the place. It think the "might be lupus" are often better off, since it usually means we don't have the more scary organ damage.

Please don't be scared. There are many things there to help you. I would say, though not a doctor, you definitely have something, and you will be treated. Also, don't be scared of hydroxychloroquine. If you look up the side effects of any drug, you may be terrified. I've taken it for 9 years over my life time, and for me it has the least side effects and is the most effective drug I've ever taken, but you do have to be patient with it. It takes a long time to work.

[Lure2]

I think AnnNY gave you a very good answer and it is also from own experience. We are all unique and have not easy illnesses. We are not medical trained only speak from our own experience and at least I have learnt a lot from other members on this site.

Sorry that the Doctor left you confused but perhaps he was also confused and not sure of what he could tell you. I thing you should call him and tell him about your situation with your work. I am sure he will understand and help you.

When I think of it: a copy of the letter to your GP is perhaps not possible to get. But perhaps you could ask him what he wrote. My Rheumatologist has even told me that I may have small "pieces" of Lupus. The antibodies go up and down.

Kerstin

[consavon]

I'm having trouble too. I know how u feel. my RA doc said she doesn'wantt want to I have APS untill I have a clot. I'm in nursing so not a good dx . My PCP &I decided to go with asa therapy & risk it. My first blood test for aps was off yhe wall high. just keep on thr Docs sad but you havetodo that. good luck.

[emmaj]

I had a diagnosis of possible lupus,but that was as far as i got before dr khamashta went on leave. I have had lupus symptoms as problems with my kidney,but now a new consultant at guys tried to take my diagnosis of aps away aswell,so im no further along. Its just awful when you may have something but no proof therefore no treatment. The good thing is i think lupus is treated the same way as aps so if your on plaquenil at least your being covered x

[phoenix77]

Well today has been interesting. I'm not sure why but I had the worst meltdown at work today. I had a complaint made against me, totally unfounded and easily resolved (I hope) but I couldn't stop crying. When I say couldn't stop I am talking a continuous 2 hours with intermittent outbursts ever since. The headteacher (I work in a school) ended up sending me home. I think stress was mostly responsible but I'm not sure the effects of the hydroxychloroquine helped at all. So far I haven't had any severe reactions so hopefully I'm ok for those but I feel sick, really really dizzy and keep getting violent stomach cramps. I'm wondering how long that will take to pass but I guess I'll find out.

The upshot of the whole episode is that my bosses are now 100% convinced I'm incompetent (they were only 99.9% sure before) but I don't have to deal with them until Monday because I paid for a private certificate until the end of the week.