[Mary Mc]

Hi all, I've just had my latest test results. Was hoping for a reduction in ANA titre as rheumy had said if so, he would wean me off the steroids. They weren't of course, doc said there was a significant increase!!! My usual reading is 1:1280. Since starting treatment over 2 years ago (400mgs of Plaquenil and 5mg deltacortril daily) there has never been a reduction. Is this normal? got such a gunk yesterday, didn't stay on the line to ask doc!!!
I know I am having a mild flare at the moment, not the worst I've had, just not sleeping and exhausted, but I didn't think the results would be that bad. Am I deluding myself? Two years down the line still having a hard time accepting limitations. Mary Mc

 

[Katharine]

Hello there,

I'm sorry to hear things are not going so good right now.

Um, after 2 years on plaquenil and prednisolone has your doctor not thought of putting you on other steroid sparing, disease modifying medication such as imuran, methotrexate or the such? The use of such drugs can often allow people to stop taking steroids.

If he hasn't tried that (maybe he has and you reacted to it?), it would seem to me it is high time. There are plenty of other options than just plaquenil and steroids.

As to whether it is normal, well yes, for some people it is but for others it isn't. Everything is so individual. The ANA in itself is nt necessarily the most important and not necesarily a good disease indicator either. What's most importnat is how you feel and are coping. Have your symptoms improved and can you lead a more normal life?

hugs :hug:
Katharine

 

[Mary Mc]

Thanks Katherine, my symptoms have improved a lot in the last year. I have fybromyagia also and once I got that under control things have been a lot better. I have had fewer and less intense flares which of course led me to hope that the ANA would have reduced and I'd be able to come off the steroid. No, he hasn't mentioned changing my meds. my brother who has psoriatic arthritis is on methotrexate. I know I'm not terribly bad, and I don't have any organ involvement, was just dissappointed that they hadn't reduced. thank you so much for your reply x x x

 

[Joandublin]

Hi Mary

Lovely to hear from you again

Im surprised at your Rheumy using the ANA as a way of measuring disease activity and planning treatment. The ANA is not a reliable way to measure how your Lupus is responding to treatment. The ANA is not a test thats regularly used as it only needs to be positive once to contribute towards a diagnosis. I had mine tested over three years ago at the start of all this and it hasnt been tested since.

My Rheumy carries out other blood tests to keep an eye on activity, e.g. Full blood count, ESR, C Reactive Protein, Complement Levels as well as keeping an eye on my anti dsdna antibodies.

Having said that I too am on Plaquenil and deltracortril. I've been on the steroids since November 2005 and, like you, was on 5mg dose for a long time. I did try to come off them but have only managed to get as far as 2mg and my Rheumy wants me to stay at that until November when I get reviewed again.

Its good that your symptoms have improved and if I were you I would have a discussion with your Rheumy about trying to taper off the steroids and see how you go. It could be that the low dose steroid is keeping your symptoms under control so be prepared for that. Also do you know what other blood tests you get done regularly and if so what are those results?

The most important thing is that you are feeling better and if thats the case it could be a good time to talk about coming off the steroids. Even though I have only ever been on a low dose I have developed osteopeania since starting them so they dont come without risks. It could be that adding in an NSAID instead of the steroids might also do the trick. Have a chat with him about your ongoing treatment and see what he says.

Take good care
Joan:rose:

 

[Raglet]

Ditto pp - it does seem to be unusual to use an ANA as being a sign of disease activity.

My ANA never gets below 1:1280, no matter what my disease activity is like.

Most rheumie's pretty much ignore the ANA level when it comes to treatment.

cheers

Raglet

 

[Mary Mc]

Hi Joan, and Raglet, great to hear from you. It was actually my GP that did the bloods for me. Didn't take in what the rest were but will go back for a sit down consult this wk. Have lost all confidence in my rheumy. He is so hard to talk to. I know I probably should have a review soon but really don't see the point. Flare is getting worse, haven't managed to get myself really going before 2pm the last two days!!!! Sorry I haven't been on much. I threw myself into work and being able to stay working. I had a particularly needy bunch of kids and it really kept me going knowing I had a real purpose (as women, do we ever get past this!!!!). In January, by darling mother passed away, and though I was strong for her in the final days and for each other after, it really took its toll. I miss her dreadfully every day, she was an incredible woman who cared for so many people.I made it til easter and then did my back in and literally had to stop. Doc put me on Amytriptilene then and from then the fibro pains got less and less, and haven't had a bother til now. I think this flare is the result of sun screen that didn't work. I went to spain for a wedding in July. I was really careful and mostly stayed out of the sun, wore factor 50 and kept myself covered. The people with me were great too always choosing places with shade for me. On the last day we ventured to the beach, and I sat under the brolly with my book, but after half an hour I was really cold. My suggested I sit out for a few minutes as I was covered with total block! she used the same block on her feet to avoid any burn, she had a different brand factor 30 on everywhere else. You guessed, Ten minutes and my chest was burned but not as bad as her feet. They were destroyed! I have returned the stuff to the manufacturers and am waiting for a reply. Anyway, sorry I 'm rambling on. It's really good to hear from you and you have set my mind at rest. I will go and see doc and get the rest of my blood work.
Thanks, Mary xxx