Following up on this post about my new doctor's office, I have had incredible improvement is just the few days I've been taking it. I can only credit the Prednisone. My swelling, while not gone entirely, has improved so much that I can actually see my wrist and ankle bones for the first time in weeks!! Legs and knees down tremendously. My shoes fit again! I have my wedding band on and it fits again! I can make a fist - not a tight one, but my fingers touch my palm again...
Doctors won't let me go above 7.5mg due to the bone problems it can cause, but they also made it clear that it is a theory that it causes the bone problems, hasn't been totally proven.
I know people who have been on 20mg for years and bones are perfect, one person was on it over 20yrs and no bone problems at all, no osteo etc.
If arava doesn't work, they might up my dose and just leave me on that.
At 20mg i walk wonderfully, can't do anything at all, but they won't let me go that high.
I was bed ridden, couldn't roll over, sit up etc. by myself for almost 6 months and went to the er over and over and they knew i had RA but didn't want to give me drugs. I had to find a family doctor who would give me meds which was pred so i could make it to my ra appt. It would have been a wonderful gift if they would have given it to me a long time before. Especially since ra doctors take forever to give you your first appt.
SunnyD,
I do the "burst and taper" of prednisone during bad flares. I told my RD it was a miracle wrapped in a little white pill! It's the only thing that completely takes away all my symptoms, even the morning stiffness.
My RD said I should take 500 mg calcium three times a day when I take the prednisone. I admit I don't always do that.
Sunny......I'm so happy you're feeling so well. My initial flare last winter lasted for months. I think that by the time I got better I had forgotten how great it feels just to feel good. You don't sound at all like a blithering idiot. You sound like someone with good reason to be so joyful. I hope it continuesI don't want to burst your prednisone bubbles but.....this is a drug thatLorster,
Yes, my RD won't let me stay on it either. He allows me to do the "burst and taper" but doesn't want me doing that too much either. SunnyD's first email says she's doing a burst and taper too.
I totally agree that in the long run, it's not a good drug, but it's never caused euphoria in me. It relieves my pain and stiffness 100%. NO PAIN. It does not mask the pain by causing euphoria.
I'd be interested to see how many people experience the euphoria.
I think we all have different experiences with prednisone and it is wise to be aware of the side effects but also to realize that there are times it is very appropriate to get inflammation under control.
SunnyD, just educate yourself on it and enjoy feeling better, but realize that it is best used short-term and/or low-dose. For my vasculitis flares, it is the only thing that will work, and the alternative is permanent nerve and blood vessel damage. I already am losing function in one foot, and can't afford to lose it in the other, I'll reluctantly choose prednisone when needed over not walking and possible organ damage.
Your post sounded just like me when I first had perednisone! I was so happy after being miserable for months. Enjoy it!
Laker
Taken from buzzle.comAfter the DMARD and anti-inflammatory was given a chance to work we tapered off the Predisone.
I've taken predisone in short courses many times during my 14 year journey with RA but I've never been on it long term. We've only used it while adjusting my medications during adjustment periods.
At age 33 I was dx'ed with osteopenia; which is the early stages of osteoporosis. They aren't certain whether it's due to the RA or all the other medications I've taken for it over the years but they do think it's all related somehow.
I'll continue to use predisone when needed. At times you do what you need to do to get through.....but at the same time I know enough about it not to use it for too long. None of my doctors have ever let me do that anyway.
I am into day #48 on prednisone as monotherapy for a Dx of inflammatory RA-ILD and this is whats happening with me:
Rx'd 10mg/d to assess tolerability. Within hours, I was transformed. Thought it was a miracle. Cleaned my house like a Whirling Dervish. Had extra energy to burn but slept ok. By day #3, I was totally pain free but irritable, anxious, PVC's, couldn't sleep, road rage, push speech, etc. Called my PCP and she said to cut down to 5mgs/d. This and nightly doses of alprazolam brought the SE's down some and I still felt pain free but at about day #8, I began to notice that I was sprouting scattered petechiae and some weird, translucent, skin tag type growths mostly on my upper chest, neck and face but a few on my arms and upper legs also. Showed them to the PCP and she said they were NOT a result of the pred. Called my cardiologist and he said they WERE the result of the pred. I'll be seeing him this week as its my annual check up time but also because I know that these symptoms can be vascular related...or worse.
Showed them to the Rheumy this week and he said "If your PCP didn't think anything of them, don't worry about them". Some Dx! A change is gonna come.
Anyway, concerned about these SE's, I decided to drop to 4mg of pred/d at about week five to see if 1. The petechiae would stop and 2. If I could maintain my relatively pain free status. By day two on the 4mg/d dose, I began to experience the old pain in the hands, knees, hips again. As of this date, I am in a whopping flare with additional tenosynovitis in a couple of fingers that have never been involved before.
I know that these doses of pred are miniscule compared to what most are taking. Perhaps, for whatever reason,I'm just not a person who can tolerate prednisone in doses larger than 5mg. Perhaps I'm just nuttier than a squirrel.
I rented a book from the library called, 'Coping With Prednisone (It May Work Miracles, But How Do You Handle The Side Effects)' by Eugenia Zukerman (famous classical musician who got lung disease & had to use mega doses of pred for a long time) and her sister, Julie Ingelfinger, M.D. ( a pediatric nephrologist who researched the pred and advocated for her sister). Interesting reading for those on high doses of pred., especially the tapering chapters.
I s'pose I'll have to increase my pred to stop this nasty flare but am going to hold out until I see the cardio and my PCP this week.
K.
Hi Sunny D,
Like you I felt wonderful after taking my first doses of prednisone. Now I wish I'd never taken this drug.
My first encounter with prednisone was in July05 when I was diagnosed with ITP ( low platelets). Prednisone's one of the first meds hematologists prescribe when treating ITP. My dr. said the pred would also help with the RA pain. Well he was right....the next day in hospital I felt great.... for the first time in 23 years I was pain free. My dr. nodded his head as I burbled on about how great I felt and warned me about the downside to the drug.
For 2 1/2 months I went through cycles of weaning myself off preds, platelet counts crashing, and going back on preds to boost them again. I still was pain free but after awhile I started having stomach problems. They kept getting worse and then one evening the pain were so severe I ended up in hospital and being dosed with morphine. Thanks to prednisone I'd developed acid reflux.
I'm now on Pantaloc & I stay away from foods that are known to trigger AR, but I'm still plagued with attacks that can last for hours. THese cramps are worse than food poisoning and labour pains... I've experienced both.
In June 07 I was having problems with MTX and my knees were filled with fluid... my rheumatologist was on holidays... by the time she'd returned we were down in Disneyland. My FP scripted me prednisone... I objected and asked for something else, but with my low platelets he was hesitant to prescribe anything else. So armed with extra strength tylenol, an nsaid and 5mg pred tablets I flew out of Canada. Then when we were in San Diego, I had the worst attack ever... it started at 2 in the afternoon and finally eased off just after 3 in the morning. So yes prednisone can seem like a miracle drug but the side effects can be horrible.
Sunny D if you're going to be on prednisone even for a short period, please make sure your tummy is protected. There are meds out there that will prevent your stomach lining from being eroded.
This is a great thread, I appreciate all the information people have added. I do worry about being on prednisone for more than a year, and also that I have not been able to reduce to a low dose successfully. It is the main thing I want to address at my next appt, but my options are cytoxan or IvIg and I think that might be worse. I will look up the book - sounds interesting.
Laker
My mother in law has CDIP, she takes the IVIG and has for a few years now.
It's odd, she got sick the exact same time I did, during Hurricane Katrina, wonder if stress is somehow also related to her disease.
She has had no side effects from the IVIG except she gets kind of tired for about 24hrs.
It is very very very expensive. She works at a hospital so 80% is paid for, but she still has to pay a nice chunk from her pocket.
She said it is her best form of treatment. Unfortunately, according to articles on the internet, she should be on immune meds like us, but her neurologist won't put her on any.
But, I hope this info on the IVIG and her might help you some, it's been about 3 or 3.5 years (can't remember Katrinas year anymore) that she has been on it. So she has semi long-term good results without side effects.
Not to high jack the thread....but I how heartedly agree that ra can be caused by stress. I was given pred, relafen and vicodin from urgent care dr. He referred to rheumy. I took the pred for 10 days. I hated it and told my rd when I saw him that I wouldn't take it anymore. It made my heart race, my eyes bulge, made me shake, and I couldn't sleep. I still to this day have not taken anymore pred. YUCK! Now after reading about all the outcomes...I'm glad I stood my ground on the pred.
I started enbrel about 6 weeks ago after taking humira for 8 months without much help. I felt great the day after my first enbrel shot! Still am! Hardly no morning stiffness and the swelling has gone down! YEEHAW YA'LL!!
Thanks Bubbagump,
I haven't heard of anyone who is on Iv Ig. It is good to know she is doing well with it. I am very fortunate to have two insurances, but I know even then it is very expensive. Hopefully I won;t need to go that route.
I personally think stress is a factor in any autoimmune disease. Mine started one month after taking on a difficult new job. Stress greatly affects our bodies.
Laker
The thing that is so important is that you see a doctor that will work to find the correct combination of medications to allow you to live without the predisone. I so often hear people say they are unable to come off predisone. When I see their signature line I see that often people are not on a strong enough combination of DMARDS and/or biologics. All too often doctors allow their patience to get in a vicious cycle of solely using pain medication and do not work to actually slow and control the disease itself. So often there's a great deal of wiggle room with these meds.
Too many people think that the meds for RA are dangerous but they do not understand the dangers of predisone either and the vicious cycle of trying to manage with pain medication verses disease management.
I know that many people can't be controlled....but there are far too many that could be. I think all too often doctors are too quick to push people out with more "pain killers" and it only helps one dose at a time.
hi
they now are going to put my daughter on pred just for 1 week to see what happens then if it helps they will discontinue and start another med ... they are using it for mostly dianostic I guess
she is 14 ..will she be ok on it just for one week ..
nervous
One week will be fine and it will go a long way in helping determine if it's some sort of inflammatory illness. If she has a good response to it they be able to determine a lot from that.Thanks
I am so exhausted from worry and tired of her being in pain .
she has been on feldene for about 2 months now and it helped so much ... but now it has stopped working
so they want to try this for a week ... and then if it helps I guess something else .. we are at 9 plus months now of still looking for a definitive diagnosis .. sigh
Lovie,
I think that is true, that the drs don't try hard enough to find the right drug combo and dose and we need to push for that. For me the vasculitis nerve damage is the big problem and after being on the imuran for a year I can see the damage is still progressing so I am anxious to find out if we can do anything else or if prednisone is the best choice. Things are complicated because I do not have consistent lab work to support the dx and so they don't want to get out the "big guns". Lots of complications in the last 6 mo that point to vasculitis so maybe they will finally dx it.