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View Full Version : Paranoid? re: low dose of prednisone



bunny28
07-11-2012, 11:01 AM
Okay so at the risk of sounding crazy, I have to admit that when my doctor suggested a two week trial of 15 mg of prednisone on top of my daily plaquinil (200mg twice daily), I wondered if he was trying to "trap me" . I have been feeling rotten but my blood tests don't show it. I have a low white blood cell count but apparently that isn't anything new for me. My doctor has not wanted to anything more than plaquenil and periodic shots of steroid. Last shot lasted about a week and then I felt awful again. I was terrifed that he would think this is all in my head (as he has talked about ruling out depression at last visit...but I swear, I know that I am and was not. I have been in the past and would not have a problem going for help for that. I just "know" beyond a doubt that something was wrong with my body.) So I had a tearful conversation with him where he told me he believes me and suggested this two week trial of 15 mg of prednisone. If it helps, he said, we would talk about stronger meds for lupus, ie. methodextrate(?).


Anyway, I wondered at first about a placbo effect or if I was imagining the difference. To be honest, I have felt like I have been given a gift. I am fully participating in my life on a daily basis. But I still wonder if this dosage is typical or at least common and if the effects of prednisone are felt quickly (like almost right away).

Thanks,
Bunny

debbie-b
07-11-2012, 01:43 PM
I have just had the same experience, been on 24mg=2 days, 20mg=2 days, 16mg=2 days, 12mg= 1 week, 8 mg= 1 week, 4 mg= three days and then nothing.
After the first dose, the very next day, I felt so much better, the day after that I felt awesome.
It does help that quickly. My rheumy said, that proves, that all my symptoms are Lupus, RA or Sjoegrens related.
Now that he found out that pred is helping you that much, he will probably start you on MTX. MTX btw. helped me alot.

Debbie

tgal
07-11-2012, 04:09 PM
For people with AI diseases it does work quickly. I have read about doctors that actually use steroids as a way to know if they should look in the AI direction. People without AI diseases (without internal inflammation) don't respond like those of us that have it.

You are not imagining anything. You are just being treated correctly! Hopefully they can get thing under control and then get you on maintenance while still keeping you feeling good!

SleepyInSeattle
07-11-2012, 04:51 PM
If they could figure out how to make prednisone that didn't have bad side effects, I would fill a swimming pool with the stuff and dive in...it feels THAT good to me. I feel like I am 25, not 205 when I take it. Immediately.

I am on Mtx, and can't say it works anywhere near as well as Prednisone - but it DOES make me feel better than nothing, and (hopefully) protects my body from too much further damage. I feel pretty crummy the 18-24 hours right after I take it (which is only once a week - I think that's pretty normal scheduling) - just low-energy and achy, and a little nauseous/"burp-y", but it's not too bad. I take it at night and sleep most of that off - usually feel fine by lunch the next day. I don't like that it means I am officially "immuno-compromised" but I guess that's better than full-blown Lupus!!!!

Some people have severe stomach issues with Mtx, but taking prescription-strength folic acid every day (1gm) apparently helps with some of the side effects, and the side effects seem to fade for a lot of people the longer they're on it. It's also available via injection if your tummy can't handle it.

So yeah - there are lots of drugs that can help beat back the Lupus. I can't say any of them work as well as prednisone, but they ARE safer, long-term.

Sorry you are having to learn all this stuff, but at least your doc is on-board and discussing these things with you!!! :-)

jmail
07-11-2012, 06:58 PM
I just confused the *fire* out of myself looking up what you're talking about there SleepyInSeattle with the folic acid... I didn't think there was much of a difference between folinic acid and folic acid, but it turns out that there is, especially concerning methotrexate use. A person has to be careful which they use, and how much, but now I'm not sure which one is which... what day of the week is this??

SleepyInSeattle
07-11-2012, 09:28 PM
Hmmmm....now I am confused too!!! I am not sure what the difference is either (folinic vs. folic acid). I just know my Rheum prescribed folic acid anc methotrexate together and told me that I was far less likely to have side effects if I took the folic acid. (And that - folic, not folinic) is what is written on the bottle).

I did a bit of internet research as well, and it sounded right to me. Not that I don't trust my doc; I just believe in being an "informed consumer"....

magistramarla
07-11-2012, 09:29 PM
Jmail,
Yes, when my rheumy in Texas started me on MTX, she was adamant about me taking prescription strength folic acid. The new rheumy blew it off and told me to buy it OTC if I wanted to keep taking it. It is important to take when you are on MTX.
I also noticed that I craved folates in my diet while I was taking it. I would happily chow down on huge salads, which was very unusual for me.
Hugs,
Marla

steve.b
07-11-2012, 10:06 PM
i use 5mg tablets of folic acid.

my rhuemy said to use it at least 1 day a week, the day after mtx.
and up to 6 days a week, never on the same day as mtx.
at the moment i am on it 3 days a week.

because mtx is a desease modifying drug.....
we need the folic acid to help us normalise our bodies after mtx.

it is very confusing when looking for info on the web.
but basically, we use folic acid to reduce the chemical reaction inside of us, only after it has had time to work.

tgal
07-11-2012, 11:29 PM
None of my docs ever mentioned the folio acid ( like that is surprising) and I always forget about it when I go to the store. I HAVE to remember that!

bunny28
07-12-2012, 06:31 AM
Thanks everyone for the reassurance and the info. I will ask about folic acid when we discuss MTX. I wish I could hold onto this prednisone feeling forever...I will enjoy it while I can...Off to spend time with my family!.

jmail
07-12-2012, 05:17 PM
15 a day is relatively high, and my doc had me on a 5 a day "maintenence" dosage, prior to putting me on the plaquenil after my last flare. I'm hoping to get back to that prior level, tho like you say, it is nice (for now) to be at 20. I'm supposed to start on 15 a day tomorrow now... sigh...

SleepyInSeattle
07-12-2012, 08:50 PM
Haha - I was on 60mg/day for a month - I COULD FLY!!!! MWA-HA-HA-HA..... ;-}

jmail
07-13-2012, 07:25 PM
Wow, a month? I could probably actually climb a flight of stairs after that!!! tic

Danica01
07-13-2012, 08:16 PM
My doctor just put me on a low dose of steroids for an entire month. I give myself methotrexate shots on Thursday night and Friday's are normally spent in bed BUT with the prednisone I started Thursday.......I FELL SO MUCH BETTER! I also can feel the benefits during the first 24 hours!!!! I always tell my doctor about this and said he would put me on it all the time if it wasn't so bad for me.

bunny28
07-14-2012, 05:57 AM
I have to follow up with my doctor on Monday re: Metho instead of Prednisone. I have to say though I LOVE PREDNISONE! I feel so much better than I have in such a long time...probably as long as I have known my now husband, so it really is a treat. He loved me grumpy, tired and sore, just imagine how great it would be if I could find a way to feel this good long-term. Surely, I will be better company too. :)

SleepyInSeattle
07-14-2012, 08:48 AM
Danica, it is interesting you say that about the pred/Mtx...I was on the Pred and they tapered that down as they brought my Mtx dose up - I had never been on Mtx before. I was kind of afraid, because I know it can make you pretty sick right around the time you take it.

Well I had no problems with it, really - until the pred dose got really low. Now the Mtx makes me feel LOUSY :-(

I think the prednisone was masking the bad effects of the mtx.