[hippiegirl33]

Hi everyone. I'm sorry I haven't introduced myself formally yet but I will very soon. I have actually been living with this disease for a few years now but I have a new doctor (since my insurance changed) and here's my question for everyone...

I recently had a baby after which I had a major flare up. I've started taking Prednisone and am on day 4 but haven't noticed any difference yet. I asked my doctor about it and he said that the Prednisone should have worked immediately and that if it didn't it was likely not a flare up of Lupus. *dumbfounded stare* I have experienced in the past that medications (including the chemo I was on a one time) sometimes worked and sometimes did not. That was the whole reason that we continued to try other things. If the Prednisone was an all out cure, wouldn't we all just use that and be done with all our symptoms?

I guess my question is have any of you tried a course of Prednisone only to find that it didn't work at all or took quite some time to start working?

Thanks so much in advance for any help you could give me.

 

[lazylegs]

Hi Hippiegirl,

In the past each time I took Prednisone I responded differently. The more ill I was when I started the longer it took to respond. Now I know to go to the doctor sooner rather than later so I can knock the flare out quickly.

In the beginning I didn't understand why the doctor didn't just keep me on Prednisone, because it worked so well for me. Since then I learned about all the side effects and am glad the rheumatologist used it sparingly.

How many more days are you supposed to be on the Prednisone?

Take care,
Lazyleg

 

[Lily]

Hi,

It could also be that the dosage is too low to actually help this particular flare. That happens quite frequently with some inexperienced docs dishing the stuff out.

What dosage are you on?

love
Lily

 

[MamaLaiste]

Prednisone, while a great med for some, is NOT the be all and end all of treatment meds, in my opinion. I have taken it off and on for 13 years now--- sometimes it helps, sometimes not. It usually is effective for my severe flare involving hives but does nothing for my joint inflammation and has actually caused serious problems with my health. I now have severe osteoporosis, complete pancreatic shut down, and other things, all directly related to the massive use of prednisone.

The med pack usually helps me thru the hard part and then I can take other measures such as rest, diet, stress reduction, etc.

Lupus is a very harsh disease and since it affects each person differently, is extremely difficult to treat sometimes.

I do wish you the very best of luck with it all~~~~

 

[Maia]

For me, prednisone at 20mg does tend to help a lot with my symptoms, but it still does not eliminate them all. Most of the time, I will still have some pain and fatigue. At the higher doses I have difficulty sleeping which can make me feel worse, and at the lower doses it's just not enough pred to reduce the pain but I can sleep. A bit of a catch-22 situation!

I don't agree with the doctor saying that it can't be lupus pain if it doesn't respond to prednisone completely.

 

[Sage Hen]

Hello,

I agree with Maia. I take Plaquenil, Cellcept and a daily low dose of Prednisone, and I still feel pain, and exhaustion. I should say also, that I have other health problems, so it is difficult to tell which disease is causing what..symptom with me.

I believe..Your dr, is misinformed if he thinks Pred should take away every symptom you have. This is especially true if you have a severe case of lupus, which would require a combination of medicatons, in most instances.

Every case of lupus is different. Each body is different. It may take some trial, and error and some time, to find out exactly what drug or drugs help you most.

Best Wishes..

Love,
Sandy

 

[onetay]

hippiegirl,
congrads on the baby. I know that preds use to work every well for me but the last time I was given it, it was like taking a sugar pill. I did not understand it either, but was told that it might be that my body may of adjusted to the preds and now we may have to find something else that works. This was not the most exciting news I had heard about the preds but ok. So with the last flare what did they give me preds again? I thought we had to find something else, ok? Still nothing happened, it did nothing to help again. I am not sure what is going on but it seems that a lot of people are having trouble with preds lately. I hope you feel better soon.

 

[hippiegirl33]

Wow thanks so much everybody!

First I just wanted to thank everyone for taking the time to reply. It looks like there's some similarities here in that most people have experienced that sometimes it helps and sometimes not. This was really what I was thinking too.

Four years ago when I first became symptomatic, the first treatment of Pred worked great! Since then I've been on Plaquenil, Sulfasalazine and even Methotrexate (Yuck). I am now on the Plaquenil and of course the Pred to treat the current flare but this is the first time I've taken Pred's since way back when I first got sick and it just honestly hasn't done a thing for me.

I'm on my second week now, so I have only two more to go and the side effects (you all know what I'm talking about) have definately NOT been worth it. I was just really flabergasted when my Rheumy replied to my complaint that it wasn't working with "Well, it should have worked right away. Maybe what you're experiencing isn't really a flare at all" as if I don't know what a flare feels like by now. lol

I'm glad to know that I'm not alone in this experience.

Speaking of getting feedback If I could pick all your brains for just a moment... I don't actually know ANYONE else with an autotimmune disease so it's pretty amazing to me to get to talk with people who also deal with these issues...My flares usually come in the afternoons (sometime around or after 3:00). I start to feel as though I'm getting sick. Low fever, achiness, pain in joints etc. Do any of you also experience it more in the afternoon or evening?

Thank you so much for your GREAT feedback and for welcoming me to the forum. I can't tell you how nice it is to know that I'm not alone with this.

 

[ATS]

I'm not sure why your rheumy would think it wasn't a flare just because prednisone didn't work. ??? because sometimes, lupus doesn't respond the same to medications, that's all, meaning, in my experience, sometimes prednisone just isn't enough to even take the edge off.

if the doctor still thinks it's not a flare and you really know it is (and i'm sure you do because you've been living with it for a while) maybe try to get a second opinion. in my experience, doctors are only people too and if your doctor is giving you answers you don't feel comfortable with, or that bum you out, it may be a good idea to find one you're more compatible with. it took me a while to find one in the city i felt comfortable with and that listened.

i hope you feel better soon.

xo a

 

[lazylegs]

Hi Hippiegirl,

Late afternoon until I go to bed is always the worst for me when I am flaring. I have found taking a midday nap helps some.

Take care,
Lazylegs

 

[Maia]

I have the same pattern with mid afternoon and on being significantly worse for me in terms of my symptoms. I can also have problems in the morning with stiffness more than soreness but it improves quickly with some movement (usually 30 minutes or less).

 

[Queenlawson]

It is nice to know I am not the only one

I love in a small town, I do not know anyone else who has Lupus. It has been wonderful reading the posts and realizing even though we all suffer differently there is a common thread for us all. I too get worse in the late afternoon and evenings and find it very difficult to get to sleep. I wonder how much we are all going through similar things?

 

[KarolH]

When I wake up in the morning I am as stiff as a board and feel like I am 85 instead of 43. Usually after about one hour I am feeling more human and get on with my day.

At 2pm daily things crop up for me. This is a tough time for me and it typically will continue that way until I go to bed.

I wish the mornings could be the afternoons.

 

[keebler]

You can count me in on the afternoon nap. Even if I just lay down for a bit and not sleep it helps a great deal.
Some evenings it seems like I sleep it away.

Take care,
Lyn