[BigSis]

Hi All,
I'm sorry if I ramble.
I got my latest blood results today and they are a bit mixed. Liver and kidney function fine Hb good (for me) and ds Dna antibodies better (30) But my white count is low and the complement on the low side.
The thing is.....after three months of prednisolone 10mgs I expected better:worried:
My hubby doesn't know why I'm upset coz he says I know I'm not 'cured' as i'm still tired and headachey so what did I expect! He's not being unkind just surprised that the results have thrown me so. It's no surprise to him that the bloods show that the lupus is still active.
I was hoping that i could start to reduce the pred at my rheumy visit in 3 weeks time but I suppose that won't happen now.
What do you think?
Am I unreasonable to hope for everything to be back to normal this soon. I was used to flaring and being better without treatment other than nsaids, but this time I've been just rumbling on 'not quite right ' for months.
Do i have to be asymptomatic and have normal bloodwork before i can expect the steroids to be tapered? What do you think? Sorry repeating myself:blush:
I'd like to have an idea of what to expect at my next appointment.

I am loads better and coping with work on reduced hours but.........

 

[LolaLola]

This is just my thoughts, not medical advice but maybe you could taper the steroids if you were taking a steroid sparing drug as well to help you get by on a smaller dose. If you have been on a dose above 7.5mgms for over three weeks you should taper VERY slowly anyway.
I know it is frustrating.
x Lola

 

[Maia]

In my experience, tapering is done even when symptoms are still present and bloods aren't perfect. The low WBC count could be due to the steroids themselves... although usually that would occur at higher doses and the lowish complements are almost always a given with a lot of us here.

I think if you express a strong desire to get off steroids and see how it goes, then a taper is quite likely. Overall, the blood test results aren't too discouraging in my opinion Another steroid sparing drug may be added to the mix, as has already been mentioned.

It is frustrating to not see a huge improvement, but bloods alone should not dictate treatment decisions. Symptoms and patient input should also be strongly considered...

Good luck at your appointment, be sure to provide an update!

 

[Katharine]

Hi there,

I think it's really difficult to comment on this as it will be so different for everyone.

When I was very bad last year I was put on pred (June 07) 10mg which was quickly pushed up to 15mg. Without it I was having a lot of trouble walking and overall pain was very severe.

It was only after I had been on Imuran for just over two months that the rheumy was able to even consider tapering so I began tapering at Christmas. I had never expected to be on pred so long but it was obvious to anyone with my state of total exhaustion and the pain, that I couldn't have tapered any earlier. I have just done a further taper down to 7.5mg. I am to stay on that dose for two months and then go down to 5mg (presuming that all goes well). I think the thing is that you have to take things as they come and I know my rheumy goes more by how I am feeling than by whether the bloods are good or not.

I think what I'm trying to say is that you will get there. Talk to your rheumy about how you're feeling and try to take things a day at a time.

Katharine

 

[BigSis]

Thank you ladies:grhug:

I am sorry to whine but so glad that there is always understanding here.

my bloods have always reflected how i feel so far although it's still quite early days. As you say Maia they are not tooo bad and thats how i feel.I think though that i am impatient to feel normal and, more than anything, clear-headed.

I did wonder about another line of treatment but my lupus is considered mild since so far my organs are ok. I will see what rheumy says.

Thanks again I'll let you know how it goes.