[wendy63]

I got a letter from my GP asking me to go and see him so that he could increase the immunosuppresants I am taking (azathioprine). He said that my blood tests had come back and my rheumy had thought the lupus was a little more active than previous.
He siad my ANA was strong positive but my Anti DNA was negative. I am also on warfarin for two DV's byt my Anticardiolipins was negative. I cannot remember any readings apart from my ESR which was 49.
If I have a negative anticardiolipins thenwhy do I need to keep taking warfarin and was my DVT's caused by lupus??????
I am so confused. I get so upset because I am very shy and dont ask questions then I get even worse because I dont understand what as been told to me.

Thank you for understanding. I feel like a right Klutz..

Love n hugs Wendy xxx

 

[Lily]

Hi Wendy

It sounds like you have a very attentive Rheumy and he is trying to do the right thing in managing your Lupus.

What dosage of Aza are you on right now and what does he want to raise it to? Many of us are on the maximum dose and it does help to keep things stable for us.

Your history of DVT's in the past is enough to keep you on Warfarin, far preferable to taking you off and letting you run a high risk of having more and doing damage. Sometimes those clotting tests will come back negative, but it doesnt mean that you are in the clear, especially with your past history

Did you end up going to see a Psychologist as was suggested by your Rheumy? We all have so much to deal with on a constant basis with the disease and something like that may be really helpful. Also they may be able to help you understand why you don't ask questions of your consultant and come away so confused and stressed, and how you might rectify that. It's really important to have a good open relationship with our doctors, after all they have our lives in their hands and we also have to be comfortable and involved in the decisions that are made about our health. It builds confidence and gives us some control back when we do this, and let's face it we need to feel we have some control. Lupus often takes that away from us with it's unpredictable course.

sending hugs,

love
Lily

 

[wendy63]

Thank you Lily for your reply.

I did go and see a cognitive therapist. She did help me come to terms with not working anymore and to adapting to a new lifestyle. She said that I wasn't depressed but found it hard to express my feelings. It helped to a certain extent. I just wish I was a more confident person, I have always been the same , way before I became ill.

I have just increased the aza from 125 to 175mg. I am stil taking 30 mg of pred as I have just had another attack of pericarditis. Hopefully I will taper back down to 10mgs soon.

I thought if my clotting tests came back negative their was no reason to keep me on warfarin. A few years back the same test came back borderline.
I am still not sure what the Anti DNA test is. I know a positive ANA is not a certain diagnosis of SLE but everytime I have had a test done it's always been positive but this time it came back strong positive. I wish I could remember the titers. I think it was 1.600 (does that make sense???). I wish I had half your brain power..

Thank you for taking time to reply and thank you for helping me understand a little better..

Love n hugs Wendy xxx

 

[Clare.T]

(((( Wendy))))


I am so glad you feel able to ask your questions here and please dont feel bad about not understanding things. It really is quite complicated.It's possible that some of what you experienced before diagnosis was in fact associated with the lupus.
About the ds DNA -please don't worrit away at it. It can be very important for diagnosis and if it suddenly appears it might be a sign of worsening disease or disease activity. It is on the whole a good sign if it isn't present.

About the ANA. Perhaps it was 1:160. If it the usual test method was used it would double each time so it would go 1:320,1:640,1:1280,1:2560.
1:160 is not very high. But again don't worry about it or rather, leave the doctor to judge how important it might be.
The SED rate is high. It could be high because disease is active but it might be high because you were fighting infection at that time.
Since the doc has increased the aza it seems he's trying to get the disease under better control.


I agree with Lily about the clotting tests and staying on the Warfarin not that I am a doctor, but I expect your doctor doesn't want to take any risks.
These clotting antibody levels can vary from time to time.

I hope you can trust your doctor. Some people haven't a clue about their test results - they just decide they can't be bothered to understand. That's always an option !


I doubt if there's any one of us who has a perfect consultation, never forgetting anything or getting all their questions answered and an explanation for everything. For one thing we usually think of questions after the event and also there often simply isn't the time to cover all the bases.

Most doctors don't think to volunteer the information. I made a bit of a mess of my last consultation despite having my notes because one of my questions led to a great diversion and the doctor himself started on a topic I hadn't anticipated
I suggest you make a note of any questions like why stay on the Warfarin, for next time
Be kind to yourself Wendy :hug:

I hope you will be feeling better soon

Many hugs
Clare

 

[LolaLola]

Dear Wendy,
As Clare says be kind to yourself. You are the Patient, you are not expected to "perform", the Docs. are there for your benefit,so don't feel you have to shine.
Sometimes Lupus sucks!
I am glad you have been helped to come to terms ith ot working, it can be a big loss of identity. I am on Long term disability.
x Lola