| Author |
 Topic Search  Topic Options
|
Breez1255 
Newbie
Joined: 08 September 2006
Location: United States
Online Status: Offline
Posts: 3
|
 Quote  Reply
 Posted: 08 September 2006 at 10:58pm |
 Hello to you all. My name is Brenda and I am new here as of about 10 minutes ago and I am so glad I have found somewhere to go that I can be understood. I am suffering with RA really bad this week and I am on prednisone too! I had to quit my job in january due to the swelling and crippled hands. I was a dispatcher for a medium sized trucking company here in Central Florida. I hope I can get some advice from someone about getting off and staying off the prednisone. Please,,, I am so desperate. I have gained about 30 lbs. in the past five years. My RA Dr. says only take them for flare ups. Huh? My flare ups are every week and I take 8 methotrexate tabs weekly. HELP!!!
Hope to hear from you!
|
|
Breez1255
|
 |
Wendy
Senior Member
Joined: 06 June 2006
Location: New Zealand
Online Status: Offline
Posts: 162
|
Quote Reply
Posted: 09 September 2006 at 2:15pm |
Welcome Brenda
Getting off prednisone is not easy. Perhaps your RA dr could add another 'disease modifying drug' to the mtx, to help reduce your inflammation? It's pretty common for us to be on two or more, especially if your RA is aggressive.
And make sure you're getting adequate pain relief during a flare too. All the best,
|
|
Wendy
|
|
Breez1255
Newbie
Joined: 08 September 2006
Location: United States
Online Status: Offline
Posts: 3
|
Quote Reply
Posted: 10 September 2006 at 7:44am |
Thanks Wendy for your reply. I am going to the RA Foundation clinic on Tuesday. I have been approved to go there since I have no job or insurance anymore. Cobra was too expensive to continue after I quit my job.
I am really worried about being on Pred for so many years. I had a garage sale a few years ago and a lady with RA was here and she said that the Pred had eaten up one of her ribs. She actually had a sunken place in her side from where she once had a rib.. Wow! I was so upset to see this. My joints are swollen and red most of the time unless I take the Prednisone very often. My RA Dr. when I had insurance said to take 4 for 2 days 3 for 2 days 2 for 2 days and 1 for 2 days. I keep doing this and get relief but then it starts back with the pain and swelling within 2 or 3 days. This mess is terrible.
I wish there was a better way to live with RA. I have been taking 8 Tylenol Arthritis tabs daily for pain. I am allergic to all the other pain killers. Lucky me huh?
Thanks again, Brenda
|
|
Breez1255
|
|
Brooke
Newbie
Joined: 12 September 2006
Online Status: Offline
Posts: 1
|
Quote Reply
Posted: 12 September 2006 at 2:29am |
|
After being misdiagnosed and given too low a dose of prednisone for my rare allergic reaction to a few facial insect bites, my adrenal gland shut down (so to speak). I knew I needed a very high dose for two straight days, then off. But they insisted on lower doses which never worked. So for 1-1/2 months I kept trying to rid my inflammation but to no avail. Then I did it on my own and took the high dose. The inflammation finally subsided but now I was hooked on prednisone.
It took me nine months to finally wean myself off prednisone. Now I was off prednisone, but my immune system was still very weak and I picked up sinus infections oral thrush other things easily. Back on prednisone because I couldn't fight it off myself. Etc etc. I would say it took me a whole year basically off prednisone to finally get my immune system back to normal.
BTW, I had terrible heart palpitations which made me slow down the weaning process even more. Finally a new doctor gave me Xanax for it and I was able to continue to wean. A few other doctors never even mentioned it.
Edited by Brooke
|
|
Breez1255
Newbie
Joined: 08 September 2006
Location: United States
Online Status: Offline
Posts: 3
|
Quote Reply
Posted: 14 September 2006 at 6:38pm |
Thank you Brooke for your information. I appreciate all I can get. I am back on prednisone for a bad flare but my new RA doctor wants me to only take 5mg a day and not do the 4,3,2,1 step down. She wants me to get an eye exam and then possibly go on Plaquenil if my eyes are alright. I have already had cataract surgery on both eyes about 4 years ago. The prednisone did they say.
So you are taking Xanax? How does that help you? I mean to wean off prednisone?
Keep in touch and God Bless Us All!
Brenda
|
|
Breez1255
|
|
arriscolwell
Senior Member
Joined: 10 September 2006
Location: United States
Online Status: Offline
Posts: 8452
|
Quote Reply
Posted: 14 September 2006 at 7:01pm |
|
I'm not going to lie...I didn't read EVERY post on here....I kinda flew to the reply section after the first few...my b/f is a Crohn's patient and has LIVED going on and off steriods. Specifically pred. It can be VERY VERY (I can't emphisise this enough) VERY dangerous to drop too fast off of it. Especially the longer you are on it. Wandering eyes and cataracts along with blurred vision, migranes, and nausea are common symptoms of coming down too quickly!!! You can DIE FROM THIS. I'm not trying to be dramatic, but there was one time our OLD hospital failed to make his prescription out for ENOUGH pred after he was admited and on HIGH HIGH doses for a week. He crashed hard. I've never been so scared in my LIFE. He had all the eye problems and he even passed out randomly one day, forcing me to call the paramedics. Do a lot of web research on pred, you CAN find a list of all of these symptom, and what they call it...I'd look it up for you, but I'm at work! sorry! Don't be discouraged. Steroids are sh*tty sh*tty things...I wish they could come up with something else! You can also see about blending steriods to ween you off. His last doc was great, and put him on two, and slowly took him off of both, one before the other. It seemed to work better than ANY way we'd previously tried it. If anyone wants any more info...I'll try to help. After the MASSIVE scare we went through, I remember a lot of info about steriods in general. :)
|
|
pats2
Newbie
Joined: 23 April 2006
Location: Canada
Online Status: Offline
Posts: 13
|
Quote Reply
Posted: 19 September 2006 at 7:16pm |
|
Hey everyone I am back, i started this mess by my complaining about my new RA dr. Dr B for you know what. I have been waiting for 1 month for her to get in tpuch with the endocronologist about my not making any cortisol since she dropped me so fast. I have been at 10 mg now for awhile but she called today to tell me to dropped 21/2 mg to 7.5 for 2 weeks and then down to 5, i phoned back and told them I would not do it as the first time around I was deathly ill and throwing up and the pain and swelling was horrendous. So now I am not sure what to do, they tell me that it is the right dosage to drop by Ha Ha just joking we all know better don't we.i am going to have to go to my Dr and see if he can't get in touch with the endo dr. I will try going down to 8 mg as I have lots of 1mg hanging around the house for when I have bad flares. Thanks for listening I am just so upset right now i am beside myself that my ra dr is such an ass. I did it once I am not stupid enough to do it a second time. good luck to you all. and do be careful with the Pred it is wick wick stuff.
|
|
angels watching over you
|
|
tangent
Newbie
Joined: 22 December 2006
Location: United States
Online Status: Offline
Posts: 21
|
Quote Reply
Posted: 31 December 2006 at 5:38pm |
Pat,
I realize no one has posted on this thread for several months, but I just joined, found this thread and had to say something.
Your rheumatologist doesn't sound competent to me. I also was asked to lower by 2.5 mg every 2 weeks, but I was asked to call if I had too much pain for too many days or if I had other symptoms. When this happened, I was told to go to 3 weeks or 4 if necessary before doing the next taper. Also, once I was at 10, I tapered down 1 mg every month. I'm at 5 now for the duration, but I hear the taper is much slower when going below 5.
Beyond that, she doesn't seem to be listening to you.
I hope I'm wrong and that things have improved for you since your last post.
Jennifer
|
|
JohninJersey
Newbie
Joined: 31 January 2007
Location: United States
Online Status: Offline
Posts: 1
|
Quote Reply
Posted: 31 January 2007 at 3:24pm |
Hello fellow RA sufferers and prednisone users. I am on prednisone for 3 months now and I thank God for it. Without it I would be suffering bigtime with my RA. I am also on methotrexate but as of today I am getting off it as after 3 months I see no measurable effect. Again, with the prednisone (15-20 mg per day depending on how I feel. not doctors orders but my common sense) I would be in very bad shape.
The doctor wants me to try Enbrel as the next treatment but that is very expensive and I do not have insurance. I have done alot of research and I want to try leflunomide (generic Arava) next. I can get it reasonably priced and it may work and the side effects dont seem too serious.
Anyone else have any luck with leflunomide ? How about Enbrel ?
RA is a cruel disease :( Im only 50 years old and have had it for 5 years now. I believe it was brought on from having sinus surgery. It was shortly after sinus surgery that RA symptoms (though I didnt know they were RA symptoms early on) first appeared. I read that RA can be brought on by a shock to the immune system which is what surgery is. Just for info, the sinus surgery was the result of polyps caused by serious infection caused by a botched root canal. Naturally no dentist would admit that caused it but I know. I know the shooting pain into my sinuses after having the root canal. I had to go back to the dentist 3 times that day and he finally gave me percoset.
And so now I suffer with RA for life due to an incompetent dentists work and I cant prove he was the cause because doctors are closed mouth when it comes to malpractice of other doctors 
Back to prednisone. I have successfully battled the number one side effect which is weight gain. Takes alot of willpower and common sense. No snacks in the house. No delicious foods. Just healthy foods. In fact I have lose nearly 20 pounds the past 3 months even with the prednisone 
So..... now I must decide to dictate to my doctor where we go next. He says leflunomide is no more effective than methotrexate. Maybe so but they are different drugs. Maybe one works and one doesnt. I say it is worth a try. The side effects of leflunomide are far less dangerous than methotrexate.
Ok, that's it for today. Glad I found this forum. :)
|
|
Lynk
Senior Member
Joined: 26 September 2006
Location: United States
Online Status: Offline
Posts: 326
|
Quote Reply
Posted: 11 February 2007 at 11:54pm |
Hi John,
Arava didn't work for me (well, it worked a bit) but I was on it for a very long time and had no side effects from it. One of the few RA drugs that didn't give me trouble. So I'd say go for it with the Arava, it's worth a shot since most of your symptoms are covered by the prednisone.
Good Luck and (belated) welcome to the forum.
|
|
