Double stranded DNA

[salmich]

Hello all

I had my rhuemmy appointment yesterday, and I wondered if anyone could answer my question. I asked my consultant if any of my symptoms could be linked to lupus he said my blood test for lupus came back negative, I asked what the blood test was and he said double stranded DNA, does this mean that as this DNA test is negative I definately do not have lupus? My ana is still positive it was 600 and something (can't remember the exact titre) this has gone down it was 1:2560 in September last year. He did say that I have an undifferntiated connective tissue disorder due to my ANA being consistantly positive and diagnosed me with reynauds, mechanical knee pain and that my chest pains are pleurisy. He didn't really comment on any of my other symptoms (muscle spasms, tiredness, joint pains, headaches and muscle pains) He wants to see me in 4 months time. I didn't know that there was one test to diagnos lupus, any help or advice would be greatly received.

Sally

[wifajax]

Hi Sally!

The anti-dsDNA test is very specific for lupus and virtually seals the diagnosis if it is POSITIVE. A negative result only means your body isn't producing the antibody. It does not rule out lupus. In fact, about half of all confirmed lupus patients do not have positive anti-dsDNA results.

If the rheumy says you can't have lupus because of that one test, he may not be much of a lupus expert... At least he does recognize that you do have something going on.

Terri

[Clare.T]

Hello Sally

I am glad you got to see your rheumy earlier than September. You've done well to take that initiative.

Terri is quite right about a negative ds DNA not ruling out lupus. It is one of the very few specific signs of lupus and if it is present then a definite diagnosis of lupus can be made.

He seems sure it is an autoimmune connective tissue disease. It doesn't matter that the ANA has gone down because it isn't regarded as an
indicator of disease activity. Anyway it is still quite high enough to count even if it had never been as high as it was last time. It was probably 640 by the way.

In your place I would be very concerned indeed that I wasn't being treated. Many doctors put patients in your situation on Plaquenil to see if it helps at all even though it often takes several months to kick in. It's possible that some Prednisone could help you through and maybe some NSAID's too.

I'd be thinking if this is how proactive and concerned he is now, what does it say about his his attitude in general and in the future

Maybe you can get your GP to call him and suggest he prescribes Plaquenil but if that's out of the question I would very seriously consider going up to London. Ask for a referral to St Thomas' which would mean a 3 months wait and also do whatever you can to afford the £200+ to go private initially to the London Lupus Centre. You will be seen fairly soon

Get copies of those blood test results. ( I hope a urine test has been done )

Good luck
Clare

[Maia]

The bigger question here is why haven't you been started on any medication yet for a very likely autoimmune disease? Regardless of the letters assigned to your condition (SLE or UCTD) the treatment really should have been started by now with Plaquenil.

There are two very specific antibodies for lupus, ds-DNA and anti-Smith. But many people with lupus do not have these autoantibodies. About 1/2 don't have ds-DNA, and well over half don't have anti-Smith. So in your case, that means that lupus cannot be ruled out on the basis of that blood test alone.

I hope you can get a copy of the blood tests ordered, and be sure all the proper ones were ordered. You can read all about them on this site. More than the ds-DNA one should have been ordered - if you don't get anywhere soon with this doctor then may want to go private & bring along copies of the previous bloodwork with you.

[salmich]

Thank you all for your advice, it has helped alot. I have written a letter to my GP asking for a referral to St Thomas's, if he says no I think I am going to have to go for a private appointment. The medication my rhuematologist said I should take was 400mg of nurofen when the chest pains happen, he did talk about a anti-malaria drug but he said that I didn't need it until the pain became unbearable and was happening all of the time. Clare in answer to your question I did not have a urine test at this appt, neither did I have one at my last appt in September, once again thank you for all your advice it really does put my mind at rest and I know that it is not me being too demanding or over reacting to my symptoms.

Sally :p

[Clare.T]

Hello again Sally

rhuematologist said I should take was 400mg of nurofen when the chest pains happen, he did talk about a anti-malaria drug but he said that I didn't need it until the pain became unbearable and was happening all of the time


Please do all you can to see another specialist !

One who really is a specialist in lupus and similar and also a decent doctor

I am not going to write how terribly angry statements like the above make me feel, or what I would like to do to this fellow, bearing in mind that this is a family forum.

Ask your GP for a urine test - it really is part of any half way decent responsible health check. Certain blood tests might show if there is any sign of kidney disease ( I think) but the urine test is an integral part of the normal testing - it might show protein in the urine or other conditions.


This is not at all to scare you but the fact is that the sooner these diseases are treated with disease modifying meds the better the outcome and just as important is quality of life. The Plaquenil is no more risky than medicines that are bought over the counter and people take without a second thought.

All the best

Clare

[salmich]

Thanks for your advice Clare I will let you know how I get on with my GP, I have also phoned the rheumatologist secretary to ask for a copy of test results and diagnosis so I should have this to hand when I get an appt at St Thomas's. Once again thanks for your advice and concern.

Sally

[Salopsally]

This is all very helpful for me also. I apparently do have double stranded DNA dont even know what that means and did ask my doctor for a copy of the blood results but he didnt give me one.
Will phone Rheumatologist secretary tomorrow and ask them for one.
Seems such a long hard road for everyone to get anything done or explained.
Good job you in here seem to know so much about it all.
Sal

[salmich]

Hi again

I have managed to get a copy of the letter that my rheumatologist sent to my GP regarding my recent appt, I wonder if anyone can answer a question I have, in the letter he said about my ANA being 1 in 640 with a fine speckled pattern - first question is what does the speckled pattern mean?, as far as I know it hasn't been mentioned on any of my other ANA results. Also it said that the only other abnormality was a slightly lower complement of C3 of 0.85 g/L can anyone let me know what this means, is 0.85 OK as he said it is only slightly low. Once again any help you can give me is always very gratefully received. I am still waiting for my GP to contact me regarding a referral to St Thomas's - have chased them today but as yet he hasn't replied!
Many thanks
Sally

[Lily]

Hi Sally and well done getting a copy of the letter, at least thats a start.

The ANA test is not only expressed as a titre (1:640 in your case this time) but they also show a specific pattern. Here's one that shows what a fine speckled pattern looks like under the microscope and also which diseases it can be associated with (those include SLE by the way ;) )

http://www.ii.bham.ac.uk/clinicalimmunology/CISimagelibrary/Nuclear2.htm

http://www.ii.bham.ac.uk/clinicalimmunology/CISimagelibrary/ANA.htm

http://dpalm.med.uth.tmc.edu/clinicalservices/Interps/ANA.html

There are different patterns and sometimes those patterns along with other tests could help point in the direction of a certain connective tissue disease. Having said that though many of us have very different patterns and still have the same disease :hehe: Did the doctor run an extractable nuclear anitigen (ENA) test? If he didnt he must have got his degree of the back of a cornflake packet ;) :lol: This includes about 5 tests to enable a more specific result and connective tissue disease to be considered. But you still dont have to be positive with that in order to have SLE.

As you can see, nothing is set in stone with a lupus diagnosis, although the dsDNA makes it a lot easier to say definitely you do as long as you have met certain diagnostic criteria. As the others mentioned though, no way is it needed for diagnosis as not every lupie has it anyway!

I cant believe this doc didnt do a urine test on you..........what was he thinking, its part of any normal workup for lupus :mad:

Complements are part of the normal immune response, however they are often low in SLE. It would be good to get your retested at regular intervals, as they may go down further, adding more weight to a specific diagnosis of SLE. I know mine did, its mainly C3 & C4 they are concerned with when talking about SLE. In order to know if your .85 is ok you would need to see what the normal range for the lab they used is. It usually lists this beside your result. However I notice you are in UK so its probably fairly similar to most labs here and as an indication C3 normal range is anywhere between 0.90 to 1.8 so yours would not be considered much to be concerned about.

We have some links pinned at the top of this section which explains more about blood tests and results. Its well worth aquainting yourself with it to ensure you are being given adequate investigation.

I hope the Appt with St. Thoms is forthcoming, they will be much more thorough and probably diagnose and start treating you.

Sending hugs,

love
Lily

[salmich]

Hi Lily

Thank you for taking the time to reply and attach the links I found them very helpful and I understand more now, I will keep you updated with (hopefully) my appt at St Thomas's.

Have a nice weekend.

Sally x

[salmich]

Dear all
Havn't been around for a while, but the good news is I have finally got an appt at St Thomas', my letter to my GP paid off and he is taking me seriously, my appt is on 28th August, I will take all my letters from my current rhumatologist and wait and see what they say, hopefully they will give me a urine test! Just wanted to thank you again for your advice and knowledge regarding test results, its been very helpful, hope all is well and I will let you know how I get on. Sally

[Clare.T]

Well done !

They do a urine test first thing. Prepare your health history leaving nothing out even if you think it is irrelevant and list current health problems,& when they started; also a note of any close blood relatives' health problems. You can even make a copy of the first two for the doctor

You can expect a thorough health history to be taken and full blood work. and rest assured of world class doctors

Lots of luck
Clare

[Lily]

Well done Sally!! :thumbs: :rose: :foryou: Good luck with your appointment, Clare has given you good advice on how to prepare. Dont forget to take along copies of your previous bloodwork showing the history of ANA positives!

love
Lily