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Discussion Starter #1
Hi there,

About 3 yrs ago, I hit a bout of bad health, I lost all my hair, had quite bad kidney problems and then developed a huge DVT in my leg.

Having seen a Rheumatologist at the time due to having a positive ANA I decided not to embark on Planquil (not sure of spelling), but, 3 yrs later I am feeling really poorly again and find it hard to function some days. There are highs and lows, but the variables are immense.

The Doc decided to run another ANA which came back positive with a new reading.

My query is, can someone advise me if a reading of

1:40 or 1:640 is worse or better or higher or lower, if that makes sense?

Many thanks,

Spudsy :)
 

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1:40 would probably not be considered positive, 1:640 is 'worse' than 1:40. Someone far better than me will explain it in more eloquent language than me, but the value is derived by how many times the sample has been diluted and the antibodies are still present, and the values are doubled each time, so is the next value on is 1:1280 and is 'worse' than 1:640.

I'm interested in why you decided not to take Plaquenil. Were you diagnosed with lupus?
 

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Hello Spudsy and :welcome:

ANA titres are measured as follows and refer to the number of dilutions in which the antibodies are still visible.

1:180, 1:320, 1:640, 1:1280... it doubles each time.

Lower positives are not generally considered as significant as they can occur for several reasons and are not necessarily down to lupus (or another auto-immune disease). The higher positives, along with clinical symptoms, are more indicative of an auto-immune disease.

An ANA of 1:640 is quite high enough to be taken seriously and be indicative of auto-immune activity.

Plaquenil is an extremely safe medication for most people (the rare exceptions being intolerance) and is basically the first line of defense in lupus treatment. It is safer than many OTC meds that we take without a second thought and is disease modifying, helping control the disease and reduce the frequency and severity of flares. Its main downside is that it takes a long time to kick in fully (usually between 3-6 months) and that is one of the reasons that it is not used on an "as needed" basis but as an underlying "insurance policy" and treatment.

I would advise you to go back and see the rheumy (if you haven't already done so) and consider treatment.

I hope that helps a bit. If you have any more questions, don't hesitate :)

Katharine
 

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See, told you someone more eloquent would come along :)

I'm trying to find a really good article I bookmarked, if I do I'll post a link.
 

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Discussion Starter #5
Ali,

Thanks for your response. Yes, I was diagnosed with SLE 3 yrs ago.

I decided not to take the drug as I wanted to see if I could work things through for myself. I'd been ill for such a long time, and without sounding melodramatic, because I'm not really known as a drama queen, I'd gone through a tough time of thinking I was really ill.

I woke up one morning with half my hair on the pillow, 2 wks later I was totally bald and hairless everywhere, thereafter I was rushed into hospital with kidney problems & stayed there for a week, and 2 weeks later rushed in with a huge DVT which had me hospitalised for a month.

Having been pumped full of medication for so long I just didn't want to take anything else.

3 yrs later I have a full head of hair, I left my stressful job and became a holistic therapist, all in all, life is fantastic, apart from the last few months I've just felt really ill again, similar to how I felt with my last attack.

The Doc is now referring me back and I'll see what the Rheumy has to say and take it from there.
 

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Discussion Starter #6
Hi Kat,

Many thanks for your reply and welcome :)

Thanks so much for all the information you have posted, it is really helpful
& much appreciated.

Spudsy
 

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Aw sorry you're going through it again. I don't really like taking medication either, but Plaquenil is a very safe drug, I read up a lot about it before I started taking it. And although I don't know much about lupus yet, I do know that it's a very unpredictable illness and it really does need to be controlled.

Let us know how you get on with the rheumy, look after yourself.
 

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Discussion Starter #9
Ali, I think my problem was, I didn't like my Rheumy! I loved the one I got at the first hospital, but then I went through my work to a private hospital and I just did NOT click with the Rheumy at all, I found him really dismissive and patronising and money orientated if the truth be known, so.... I think that maybe had a bearing on my decision too. I'm a believer in being comfy with someone, as there has to be such an element of trust and support.

I guess we all go through people not listening to us, I recall someone calling Lupus the "hidden disease" as it's so had to diagnose, and for a long time no one would believe me. Maybe I had to deal with my angst/demons first to get to this stage.

Thanks for your kind thoughts & look forward to speaking with u more.

Spudsy
 

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It's really hard when you don't get on with medical professionals - I hate my GP and have just changed this week. I have yet to have any decent support from any medical professionals, my knowledge of this illness comes from here and a book! I was only diagnosed earlier this month though, and I was just too shellshocked at my rheumy appointment to take it in or ask any questions!


http://www.healthy.net/scr/Article.asp?Id=3651
 

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Discussion Starter #12
Ali - I know what u mean, it sucks! When I had my DVT, I went to the Doctor 3 times in a week and told them something was wrong, they all said I was "imagining" it! I went for the final time and demanded to be referred. Sat in A&E for 8 hours due to a road collision, and when the lovely Doc took me through he asked me what I thought it was, when I told him, he believed me and sent me for a scan, from there the scanner said it was the biggest DVT he'd seen, so I was admitted ASAP and then it started going downhill!

My Doc asked me when I saw her afterwards, "do u blame me for the mis-diagnosis", I told her I didn't, but that we all know our bodies and we know when something isn't right and I feel that they aren't there to judge us or dismiss us, so, since then she's been really good and always knows when I go to see her, it's for something I really need!

Thanks to u and Kat for the links, appreciate it.
 

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Hi Spudsy welcome :)

Take the Plaquinel is my advice. I hate all drugs but I love the plaquinel. it's probably safer than asprin in most people.
 
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