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debbie-b
07-06-2012, 12:41 PM
After feeling awesome for over three weeks on prednisone,now all hell is breaking loose in my body. I had to taper by my doctors orders. As soon as I hit 4 mg, all my symptoms and pain started all over. Now I am completely off the pred.
Yesterday afternoon I had my first ocular migraine, I also had my first really bad bout of muscle pain. This morning I got up with a huge dose of morning stiffness and back pain, so bad, I couldn't stand up straight and walked bend foreward, like a grandma. My back got a little better with Mobic an anti inflammatory. All this was gone, when I was on the pred.
Before the pred. all fingers on my right hand were swollen, had hard bumps on the knuckles and they hurt very bad. With the pred. the bumps were gone, so was the swelling and the pain. Now it is all as bad as it was before. BTW, the rheumy thought, that those bumps on my fingers, were ganglion cysts, but now he knows, that it is either from the lupus or from the RA.
Alot of my muscles and joints are hurting, the pain level is at 5-6.
The third day, after starting the pred. I told my husband, " today is first day in six years, that I am not in any pain". He is Mr. Macho, but that brought tears to his eyes. He was so happy for me.
A med like prednisone would be nice, if there weren't all those bad side effects.

Debbie

jmail
07-06-2012, 01:02 PM
Do you do, can you do other meds? I've started on plaquenil with a 400 dose (2x 200). Doc says it takes several weeks to feel any difference, and several months to get it built up in the system. I'm stuck at 20 a day of prednisone, after weening down from my last flare (which was bad), and we're hoping this will get me down below 10, or maybe off it completely (fingies crossed). Sorry to hear 'bout your issues. It's a bother finding the sweet spot with the meds. You might need a 5-8 daily dose...

debbie-b
07-06-2012, 01:59 PM
Do you do, can you do other meds? I've started on plaquenil with a 400 dose (2x 200). Doc says it takes several weeks to feel any difference, and several months to get it built up in the system. I'm stuck at 20 a day of prednisone, after weening down from my last flare (which was bad), and we're hoping this will get me down below 10, or maybe off it completely (fingies crossed). Sorry to hear 'bout your issues. It's a bother finding the sweet spot with the meds. You might need a 5-8 daily dose...

My rheumy doesn't want me on prednisone at all, he only put me on it because I have autoimmune hepatitis and a liver biopsy revealed inflammation, which he wanted to halt with the pred.
I didn't answer your other thread, with your plaquenil question, because I didn't want to damper your hopes. I was on plaquenil for 8 months and they didn't help me. From what I see here on WHL, most people are satisfied with the plaq, I just think that I am an odd ball.
The only thing that ever helped me was MTX shots, but I had to stop them because of my liver.

Debbie

rob
07-06-2012, 05:29 PM
I'm sorry it's all come back so soon Debbie. Prednisone is such a double-edged sword. The short term effects can be exhilarating, even life-saving, yet the long term side effects can be so awful.

Try to hold on to the fresh memory of these 3 plus weeks of feeling great. Those thoughts can sometimes help us through the pain and bad times.

Please take care of yourself, and hang in there the best you can,

Rob

Hunniebun
07-06-2012, 09:40 PM
You aren't an odd ball debbie, Plaquenil isn't a miracle drug for me either, it barely helps and I had a hell of a time with it when I started it up again, it made me sick. I was doing so much better on prednisone and would rather take that but my doctor won't let me anymore.

tgal
07-06-2012, 11:49 PM
Do you do, can you do other meds? I've started on plaquenil with a 400 dose (2x 200). Doc says it takes several weeks to feel any difference, and several months to get it built up in the system. I'm stuck at 20 a day of prednisone, after weening down from my last flare (which was bad), and we're hoping this will get me down below 10, or maybe off it completely (fingies crossed). Sorry to hear 'bout your issues. It's a bother finding the sweet spot with the meds. You might need a 5-8 daily dose...

Actually it can take up to 6
Months for the ffull effects of plaquenil to be felt. It isn't enough for everyone but it is often very helpful

I have been on high dose steroids for 3 years. It isn't goOd for me but it and the rest of my cocktail are the only way infunction

magistramarla
07-07-2012, 02:20 PM
Debbie,
I'm sorry that all of your symptoms came back. We need for some smart researcher to invent a new kind of steroid that has all of the good effects and none of the bad ones. Oh, and would have very long-lasting effects, too. Is that too much to ask?
Hang in there.
Hugs,
Marla

jmail
07-07-2012, 02:27 PM
Here's hoping and praying that you and your docs can find something that works, and with minimal impact to the rest of your system Debbie. The plaq can also adversely affect the liver so maybe it set yours off, and the meth just picked-up where the plaq left off...

SleepyInSeattle
07-07-2012, 02:38 PM
I was on a month of 60mg/day because i lost hearing in one ear (autoimmune-related) and man - I felt like SUPERWOMAN. No bad side effects - I just felt amazing and had tons of energy. I even lost weight. I have never done cocaine, but it must be what cocaine feels like, but without the total mania.

It.
Was.
A-W-E-S-O-M-E......

It is just not fair that it kills 'ya eventually.

I am very in favor of somebody inventing Prednisone with no side effects!!!!

I am tapering off and am down to 10mg/day now. I was supposed to be off it all by now but we took a trip to Atlanta in the extreme heat so I stayed on it a little longer. Now that we;re home again in the (relative) cool weather, I have to get totally off it. Aches and pains, brain fog, fatigue are coming back - though at least the hearing loss has stabilized. I am on Mtx now as well as being on Plaq for 10 months or so, so hopefully those will help....but nothing works as well as Prednisone!!!!

I feel your pain - or at least my version of it.

jmail
07-07-2012, 02:42 PM
... I feel your pain - or at least my version of it.
Good one... lol - and I agree with you on the super-dose of pred - only I do superman instead... tic

debbie-b
07-07-2012, 03:33 PM
I'm sorry it's all come back so soon Debbie. Prednisone is such a double-edged sword. The short term effects can be exhilarating, even life-saving, yet the long term side effects can be so awful.

Try to hold on to the fresh memory of these 3 plus weeks of feeling great. Those thoughts can sometimes help us through the pain and bad times.

Please take care of yourself, and hang in there the best you can,

Rob

Rob,
I do exactly that, I hold on to the memories. I felt this good at the right time, because my daughter and grandkids were here. We had a great time. Can you believe it, I played batminton with them, it was fantastic.

Debbie

debbie-b
07-07-2012, 03:35 PM
You aren't an odd ball debbie, Plaquenil isn't a miracle drug for me either, it barely helps and I had a hell of a time with it when I started it up again, it made me sick. I was doing so much better on prednisone and would rather take that but my doctor won't let me anymore.

Well, I am glad, that I am not an odd ball. It didn't make me sick, it just didn't do anything for me.
Are you taking anything now?

Debbie

debbie-b
07-07-2012, 03:39 PM
Debbie,
I'm sorry that all of your symptoms came back. We need for some smart researcher to invent a new kind of steroid that has all of the good effects and none of the bad ones. Oh, and would have very long-lasting effects, too. Is that too much to ask?
Hang in there.
Hugs,
Marla

Marla, that is exactly what my husband said. It shouldn't be that hard to make a med like that. But it seems, that lupies aren't that important to researchers, after all, most people have never heard of lupus and don't know what it is.

Debbie

debbie-b
07-07-2012, 03:41 PM
Here's hoping and praying that you and your docs can find something that works, and with minimal impact to the rest of your system Debbie. The plaq can also adversely affect the liver so maybe it set yours off, and the meth just picked-up where the plaq left off...

Thank you jmail.

Debbie

debbie-b
07-07-2012, 03:46 PM
I was on a month of 60mg/day because i lost hearing in one ear (autoimmune-related) and man - I felt like SUPERWOMAN. No bad side effects - I just felt amazing and had tons of energy. I even lost weight. I have never done cocaine, but it must be what cocaine feels like, but without the total mania.

It.
Was.
A-W-E-S-O-M-E......

It is just not fair that it kills 'ya eventually.

I am very in favor of somebody inventing Prednisone with no side effects!!!!

I am tapering off and am down to 10mg/day now. I was supposed to be off it all by now but we took a trip to Atlanta in the extreme heat so I stayed on it a little longer. Now that we;re home again in the (relative) cool weather, I have to get totally off it. Aches and pains, brain fog, fatigue are coming back - though at least the hearing loss has stabilized. I am on Mtx now as well as being on Plaq for 10 months or so, so hopefully those will help....but nothing works as well as Prednisone!!!!

I feel your pain - or at least my version of it.

You hit the nail right on the head, I too felt like SUPERWOMAN. It is my drug of choice,lol.
I am glad that your hearing loss has stabilized, hopefully the MTX is going to help you as well as it has helped me.

Debbie

rob
07-07-2012, 03:55 PM
I am very in favor of somebody inventing Prednisone with no side effects!!!!


If that were to ever happen, I'd throw the party of the century for all of you, and I'd bring a semi-truck packed with a lifetime supply of the stuff for all of us. To make the evening even more entertaining, we could book some belly dancers and rent one of those industrial sized never-runs-dry margarita dispensers...

debbie-b
07-07-2012, 04:06 PM
If that were to ever happen, I'd throw the party of the century for all of you, and I'd bring a semi-truck packed with a lifetime supply of the stuff for all of us. To make the evening even more entertaining, we could book some belly dancers and rent one of those industrial sized never-runs-dry margarita dispensers...

Great idea, but can I have male belly dancers?

Debbie

jmail
07-08-2012, 08:23 AM
Great idea, but can I have male belly dancers?
You want a guy to dance on your belly?... Or would that be a person (male or female) that dances on a male's belly?... sort of like a Mexican hat dance?... He'd have to have "12-pack" abs. That's what my 10 year old says he's going to have. They're "better" than "6-pack abs"...

But i do vote for the semi-truck full of med that Rob wants to share with everyone... I'll drive, so long as I can stop at every rest stop along the way, to stretch the legs and get the swelling down... Can I have some sarsaparillo though Rob? Me and alcohol necessarily parted company over 20 years ago... tic

I think we've thread-hijacked your original post, Debbie... lol

priscillamc
07-08-2012, 09:29 PM
i just started prednisone...been on plaqunil, folic acid, medrol dose pack and methotrexate. Could you please tell me the "awful" side effects you were referring to?

jmail
07-09-2012, 07:45 AM
I thought there was a "stickie" thread somewhere on here about it, but I couldn't find it right away, so linking you to MayoClinic with Balance the Risks and Benefits (http://www.mayoclinic.com/health/steroids/HQ01431), which is one of many such "hits" from an internet search. Take any of the internet advice with a grain of salt, and use doctor consults as your basis of decision. It's "trouble" is with mostly medium to long-term use of steroids, with the longer the use, the smaller the dose that can cause issues. When a person goes into a flare, a high dosage might be used, say of 60mg, for several days, then a person gets "weaned" back down to a "normal" level over the course of days/weeks, or completely removed, dependant upon the situation. Low dose of say 4-8mg is oftentimes used. I'd been on 10mg a day for almost a year, mostly due to my lungs, but when I flared, they bumped me way up. I'm back down to 20mg a day, but we're trying to get it back down, and preferably below 10mg by "supplementing" with plaquenil. It can be tough finding that "balance" with the meds. As a little side note, steroids can also mess with the flora in your tummy, allowing fungus to "bloom", and the medrol can compound that by killing bacteria. If you don't already, it might be adviseable to add probiotics to your diet Priscilla.

SleepyInSeattle
07-09-2012, 08:02 AM
I just want to second that comment about the probiotics - it's fairly easy to take them and keep things in balance, but once they're out of whack, it can be very difficult to get things healthy again. One of those cases where it's definitely worth it to PREVENT the problem instead of TREAT it once it's already occurred.

steve.b
07-09-2012, 08:12 AM
the probiotics issue can be severe, if left unchecked.
even a lot of doctors underestimate what it can do to our system.

this may help explain.....
http://forum.wehavelupus.com/showthread.php?12091-I-B-S-relief

SleepyInSeattle
07-09-2012, 05:15 PM
Funny coincidence - after posting about this just this morning, not even two hours later while driving to work I heard a really interesting radio story on Probiotics - here's the link, in case anybody's interested:
http://www.npr.org/blogs/thesalt/2012/07/09/156381323/confusion-at-the-yogurt-aisle-time-for-probiotics-101

Seems like there are some promising results with IBS patients especially.

LindaJ
07-10-2012, 10:40 AM
Hi Alley Cat!
I am brand new to this site though most definitely not new to Lupus. I have had Lupus for 47 years!! I was 14 when it hit me hard and since not well known at the time, I nearly died. I took prednisone for 40 years before a new doctor decided to put me on Plaquenil. Your post struck me because I too have had the amazing effects of prednisone. When ever I took 60 during a flare it was like being on drugs!! I even became pysicic a few of the times, and to this day I have a girl friend call me to see if I have "any feelings" about something going on in her life! The superwomen feeling was there too vaccuming at 11:00 at night etc. And it works over night for me! Side effects.............I was blessed not to get osteoporosis since I am very small boned, but I do have alot of plaque in my arteries to a moderate degree. I'm glad the predisone did it's job for your hearing! As long as the pain is livable, it's really best to be off of 'my old friend' prednisone. Best to you.

LindaJ
08-25-2012, 05:04 PM
Hi Debbie,
Perhaps you are not an odd-ball with the Plaquenil but it's just not the right time for it. My new 'rheumy' decided to put me on it when my Lupus seemed pretty much in control. I was on 5 mg of prednisone per day with very little joint pains. He mentioned that he was putting me on it now because I was doing well. He then weened me off the prednisone I had been on for 47 years up and down. Perhaps when your Lupus gets close to a remission you would be able to take Plaquenil and do fine. I hope they have found something to help you and that you will get out of this flare!! Oh, by the way, I have to agree on the majic of prednisone. It worked for me overnight in previous flares....but it is a double edged sword so I understand why your Dr. didn't want you to stay on it.

LindaJ
08-25-2012, 05:07 PM
Your reply is really cute! Brought a smile to my face on a long tiring day!