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View Full Version : Learning more about Lupus, because of Prenisone.



debbie-b
06-19-2012, 12:43 PM
Been on Pred for a week now. Really for the first time ever.
I did get a steroid shot, in the butt, when I was in a bad flare, but was never on Prednisone.
Many of you know, that I was put on Pred, because of my liver issues.Now, I am almost pain free, for the first time in almost 6 years. I feel elated.
Years ago a X Ray of my back revealed, Osteo Arthritis in my back, but now on Pred. my back pain is almost gone, so I figure it must be RA in my spine. I do have RA, but my rheumy always said, the spine has Osteo Arthritis. But since the pred. takes away the inflammation, in my mind it's RA.
I also suffer from alot of muscle pain, now with the pred., almost no muscle pain. To me, that means it's from the lupus, not fibro, like he said it was.
My joints are so much better, the pain level used to be 5-6 daily and a 8 some days, now it is a 2-3.
I used to get ocular migranes, about 2-3 a day, didn't have ANY, since I started the Pred. The sjoegrens is better, my eyes are still dry, but my mouth has some saliva now.
I have the wierd skin coloration, the purple fishnet pattern, something.... retularis ( can't think of the name), my skin now lookes milky white, no more purple.
Am I right, with my assumption, that all these things, that are so much better now, are all autoimmune related, since they all improved so much, on the prednisone?

Debbie

steve.b
06-19-2012, 09:52 PM
i am glad the pred is working so well.
what dose are you taking?

debbie-b
06-20-2012, 02:54 AM
I started at 24 mg for 2 days, 20mg for 2 days, 16mg for 2 days, 12 mg for one week( started that yesterday) and then 8mg for two weeks, down to nothing.
It is just supposed to help my liver heal. After the liver is in better shape, I am going back on MTX, which has really helped me before.

Debbie

tgal
06-20-2012, 11:40 AM
I know that some docs use steroids as the AI test. They give them to patients and if they work, they begin looking down the AI path because steroids work really well on AI diseases. I would say you are on the right track

debbie-b
06-21-2012, 01:55 PM
I know that some docs use steroids as the AI test. They give them to patients and if they work, they begin looking down the AI path because steroids work really well on AI diseases. I would say you are on the right track

They should all do it, at one point, instead of people having to go through all the crap, until they get a diagnosis. That would make sense to me.

Debbie

Corella
06-23-2012, 10:49 PM
For all I hate steroids for the weight gain and mood swings, I cannot tolerate more than 3mg of Preds now, I am so sensitive it isnt true and have to wear this on my medic alert. I am only on 0.5 of Dex, however my skin is fabulous - seriously, I am getting compliments. My hair always grows excessively on steroids and I have to have it cut every 4 weeks.

I have saliva as well, pain is not as controlled as what it was on 1mg of Dex but it sure is helping. I have gained 8kgs on the steroids, now I have reduced, Rheumy said I will lose it slowly, so I am trying not to be too hard on myself.

But steroids have made a big difference to me - what a novelty it is to wake up dribbling!!! So I am looking on the positive side to steroids and there have been many.

Hope you continue to improve xxxxxxx

debbie-b
07-03-2012, 05:31 AM
I have been close to pain free, for weeks. But of course, I have been tapering down and now my pain is coming back.
When I was on 24 mg, I had no joint pain, no swelling, no muscle pain, no rash or little red dots anywhere, I had saliva( it's great to have a wet spot on your pillow), my eyes were not as dry.
I did not gain any weight, but my face is starting to be puffy, if I " poke" my face, it leaves an indention. I was not overly hungry either, which I was afraid of would happen.
Now that I am down to 4 mg, things are going back to " normal", sigh.
My rheumy hates to prescribe steroids and want's me off them asap.
We'll see, what is going to happen now.
I was lucky, that I was on the steriods, when my grand kids were here. I was able to do everything with them. We went to Niagara Falls, which involves alot of walking, I was actually playing batminton(sp?) with them, it was so much fun.

Debbie

LindaJ
07-31-2012, 09:31 PM
Interesting. I have to agree that prednisone is a miracle worker! How much are you on? I will never forget when I took 20mg one evening (on my doctors ok to begin prednisone at that level because I was having so much muscle and joint pains in my hands and shoulders). OVERNIGHT my pains were gone! As far as the osteo arthritis...I'm not knowledgable on that. I got ocular migrains with and without prednisone so I don't think really that they are Lupus related...but who knows?? They could be caused by vasculitis which is related like Reynauds is related and also caused by vasculitis. I'm glad you are feeling better. Hope you will not have to take a high amount of prednisone long. LindaJ