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Author	Topic:   Finally going off prednisone - But Scared
JoannaCS	posted 12-12-2005 14:37 ET (US)      Hello, I was diagnosed with RA 18 years ago. I am now 33 yrs old. I have been on 15mg of prednisone for 14 years. I started tapering off about 5 weeks ago. I am on 11mg now. I have been reducing the prednisone 1mg every 10 days. I started seeing a new Rheumetologist 3 months ago. He said that I NEED to get off of the prednisone. He started me on Arava and that is helping my RA. I have not responded to alot of the RA meds. (like methotrexate, plaqunil, etc.) I did really well on the prenisone until about 5 years ago. since then I have gained about 80lbs. My skin tears with a minor scratch. I have had to have stitches several times for cuts that should have been minor. I am excited to go off of this horrible drug, but I am also scared. My legs ache and I have twice the anxiety that I had before. I feel like I am loosing my mind. When will I feel normal again? Am I going to have a bad Flare? Has anyone else been though this too? or going though it as well? When will I lose some of this weight? I need answers.
Carolan	posted 12-13-2005 10:58 ET (US)          Hi Joanna, welcome to the Creaky boards!   First of all, take a deep breath. :)   Getting off prednisone will take lots of patience and there are going to be side effects, but try to focus on the long-term positive benefits of being off this stuff. I used to get terrible insomnia when I was trying to wean off it. I believe your doctor is right to insist you stop taking it, given the side effects you are already experiencing with your skin. You should also have a bone density test done, and your eyes checked, and your blood sugar checked. Just to be safe!   It's hard to say if you will have a bad flare. Some of us here have had to wean off 1/2 or even 1/4 of a mg at a time - a 1 mg drop was too much. I was good with weaning off until I hit the 5 mg level, then things got tricky.   I daresay that once you are off it, you will lose a significant amount of your weight, but at age 33 you will probably need some additional work in terms of diet and exercise. Flush your system with tons of water, and watch your salt intake. It CAN be done, even with RA! I took off 20 lbs. following the Weightwatchers program, although it was slow because I can't do the vigorous exercise.   Hang in there and let us know how you're doing!   Carolan
JoannaCS	posted 12-13-2005 13:02 ET (US)          Thanks Carolan, It is so encouraging to hear from someone else who has gone though this also. I know I can get though it, and I will be better off in the long run, but everyday is a different struggle. Yesterday I was an emotional wreak!! As if dealing with RA is not enough, we have to deal with the side effects of all of these meds too. I am scared of the prednisone taper because.... if it is this bad already, it is probably only going to get worse as I lessen the mgs. But I cant wait to look in the mirror again and see my face as it was years ago. It has been too long!! Thanks Again
Carolan	posted 12-13-2005 16:42 ET (US)          {gentle hugs}   Being scared is natural. But being scared = stress. Stress leads to more pain, which leads to more stress, which leads to more stress, etc. It's a vicious cycle!   Try some relaxation techniques to break that cycle of negative thoughts that lead to more fear and stress. I know, it is hard!   It isn't unusual to have worsening symptoms as you taper off. But often, if you sit tight and wait for your body to adjust, things will settle down.   You're absolutely right, RA is tough enough without having to deal with the meds and the side effects that are almost as bad, or worse! It sucks, and it's not fair.   Keep your head up and keep putting one foot in front of the other. Don't let it defeat you! You can do this!
bkc	posted 12-13-2005 19:27 ET (US)          Joanna--I lost over 60 lbs in the 2 years I have been off Prednisone--without dieting, and up until very recently without exercise. The pounds came off very gradually. I wanted off the steroids very badly, so I was motivated. Also, being on the Remicade successfully helped a lot. I had a lot of aching when I was tapering off, but I got through it. I now use prednisone for flares only. I look totally different than I did a few years ago, its kinda freaky! Best of luck let us know how you do!
ocean20	posted 12-13-2005 22:51 ET (US)          Joanna, It would be pretty hard to top Carolan's advice. Me too, I am struggling with trying to get rid of this stuff. I put on about 30 pounds in 2 years of use (another year of less than 10 mg/day), about 15 mg/day and now I am at 12 mg/day. I think everything that carolan said appears to be verified by all the lieterature I read about prednisone. In my case, it is causing the addition of another medication as it increased my blood pressure due to fluid retention so I take Diovan daily to keep my pressure in check. So, hang in there, all my readings on the subject clearly suggest that getting off it is possible with patience, lifestyle modifications, and never giving up. Yet, remember, unless your RA goes into remission somehow, you will need an alternative to stop joint damage and I am currently waiting for methotrezte to kick in. My MD wants me to get "more aggressive" and try Enbrel or Humera to which I remain very reluctant. I am 54 and diagnosed with RA about 4 years ago.
JoannaCS	posted 12-14-2005 15:29 ET (US)          Thanks Everyone. It is so nice to hear from people who are going through the same things as me. I know very few people who have RA and no one else seems to truely understand the pain that we go through. It is NOT just those everyday aches and pains that most people feel. RA is a crippling pain. I try to go to work everyday and pretend like I am not in pain. I do not announce that I have RA. I only explain if people ask and I always "down-play" the pain. I have been on Arava for about 2 months now. Before that I avoided real medical treatment. I just kept getting prescriptions from my MD for prednisone. I relyed on that drug for too long.... and it was not helping as much anymore. I also started to go to the Arthritis support group here near Philly. My husband of one year has been going along too. He wants to understand more of what I am going through. He is so supportive, but he tries to push exercise on me all of the time. I know he is right, but after 8 or 9 hours of work, even if I feel good enough to exercise, I don't have the energy. This recent dianosis with Cushing's syndrome has forced me to take care of myself again by getting real treatment from a Rhematologist, and looking for answers from as many resources as I can. I just want to feel better again, without the prednisone.
sweterson	posted 12-17-2005 14:30 ET (US)          Hi Joanna, I was in your shoes several years ago and had to wean myself off of prednisone. I did about the same - down 1 mg. every 10-14 days. I was petrified and it wasn't easy. My saving grace was changing my diet, believe it or not. I ate lots of raw fruits and vegetables and a minimum of animal products. I stayed completely away from dairy foods and processed foods in packages. It is a much bigger effort but it was so worth it to me. After I got off of the prednisone, I found that sticking to this type of diet halped my inflammation so much so this is how I still eat. That said, everyone is so different and I hope you are able to find your own successful path soon. Jody
mel8122	posted 12-17-2005 17:38 ET (US)          Im scared. I was prescribed Prednisone 10mg for 10 days and the doctor didnt taper me off of it. Ive been off of it for 5 days and am experiencing restlessness/anxiety/nervousness. What should I do? When will these side effects go away?
JoannaCS	posted 12-19-2005 12:26 ET (US)          Mel, I think you are Ok. 10 days is not really long at all. I have been on prednisone for 14 years. I remember having all of those symptoms when I first started prednisone. Give it a little bit longer and you should be ok. Alot of people are only on it for a short period of time. Prednisone is used for so many things.
JoannaCS	posted 12-28-2005 10:47 ET (US)          Hello Guys, I dropped down to 10 mg the other day. I put it off, because I wanted to enjoy the holiday with my Family in VA. I am glad I waited because I have been in so much pain for the past two days. I am not having a Flare, My muscles ache. My legs and arms hurt so bad I can not sleep through the night. I called my Dr. and he wants to see me today. I hope he can give me something for the pain. My boss just told me yesterday that he needs me to work 15 - 20 hours overtime each week for the next 2 to 3 months, or until the 2005 financial statements are done. and I start back to school on Jan. 9th. I hope I can find the energy for this and the pain gets better. There is no way I call do all of that if I feel like I do today. What can I do to get the energy and sleep through the night during this ordeal? I wish I had never gone on prednisone in the first place. Does anyone know what I can do for the aches from the prednisone withdrawals?
ocean20	posted 12-28-2005 19:04 ET (US)          JoannaCS, I find advil to work pretty good and fast in keeping pain away. Actually, I am using it as I taper off prednisone where I am currently approaching 10 mg/day from 15. But, am doing this with 20 Mg/week of methotrexate.
courts	posted 12-30-2005 23:05 ET (US)          hello, i'm on the prednisone taper too. i've been on the drug for about 9 years and tapering down from 10mg for about a year and a half. i keep taking breaks when it gets overwhelming. right now i'm at 3.5mg. from 10mg to 5mg, the hardest thing to deal with was the pain. from 5mg and down, the hardest to deal with is all the mood swings, depression, anxiety, etc. i'm just all over the place when i try to take another step down. so that's one more person who knows how tough it is to do what you're doing. you can do it! we all can! if nothing else, haven't we all learned patience with our illnesses? good luck and take care of yourself. =) courts
ocean20	posted 01-01-2005 21:50 ET (US)          Happy new year all: I am currently on 10 mg/day but I split the dose twice 5 mg/each. I need to have it work while sleeping so I can put my socks on in the morning and move to go to work. So, I take 5 mg before I go to bed. The reason I do not take 10 mg in one dose is because I find it does not last 24 hrs and if I take it before going to bed I can not sleep. Does anyone have similar experience?
JoannaCS	posted 01-03-2005 11:31 ET (US)          Hi Ocean, That is exactly what I am doing 5mg at Noon and 5mg before bed. It is the only way I can get out of bed in the morning. I am going to start to taper on my daily mg.s next. I used to take 15mg a day - 10 at night and 5 during the day. The doctor wants me to stay on 10 mg for a while now. My biggest problem with the taper now is the acheing legs, especially at night. and of course the mood swings. I am taking ibprofin. It helps some, but not enough. does anyone have any suggestions?
ocean20	posted 01-04-2005 22:30 ET (US)          Joanna I have been taking advil (4-5 a day) to balance the pain as I tapered to 10 mg/day of pred. I also split the 20 mg/of methotrexate into 2 doses one per day last 2 weeks as the 20 mg/per day dose made me a bit sick. WIll see how things go when I see the MD next week. I know he wants to push all the new drugs on me
JP	posted 01-06-2005 18:16 ET (US)          This is all so familiar. I hate this drug!!!! I've been wanting to ask the same questions but I feel like there are really so many- where do I start! All of your responses have helped. I'm 31 and have been on prednisone for 8 years rangeing from 2mg to 25mg. I have been on several DMARDS trying to find one that would allow me to come off the prednisone. Enbrel (+nsaid) worked for awhile- I was able to get down to 2mg. It's crazy how I got that low but couldn't get off. When I got pregnant I had to stop Enbrel and increase prednisone. After my pregnancy Enbrel(+nsaid) didn't help as much and I wasn't able to get lower than 10 mg. and still had alot of flares. I stopped Enbrel again for another pregnancy and again increased prednisone. (FYI i did great during my pregnancys with 8-15mg prednisone only) After I had my baby I was ready to try a new DMARD and again start getting off prednisone. I took remicade for 6 months and it did not work at all- in fact I had more frequent flares and ended up on 25mg prednisone and still pain and swelling. I've been on Humira(+ nsaid) for 4 months and unsure if it's helping. I'm taking 15-17mg now. I feel that because I can't come off my prednisone it must not be helping. But from what I'm hearing you'll say- do I just have to work through the pain to come off of it? Will it go away?? When I drop down and have inreased pain and swelling I go back up on my dose. I feel like I'm taking the minimum I can to function (work and 2 small children). I also feel that if I keep coming down despite the pain and swelling I am doing more damage to my joints by allowing the disease to be active. But then there is the damage I'm doing to the rest of my body with the prednisone. For those of you that have been able to come off the prednisone - did you continue to have swollen joints as you were tapereing or did you only taper as much as you could without the flares? If you did continue to taper how long did it take until the pain went away. Is it like a withdrawl that you just have to deal with or is it bad to let the disease get that out of control. I could deal with pain it's just the swelling and stiffness- I have to be able to get out of the bed in the morning. Some of you mentioned Advil- can you take that in conjuntion with voltaran? I wish ther was another anti-inflammatory that would work as well as prednisone. I've tried almost all the nsaids. Sorry this is so long. I would appreciate any help I want to get off of this drug so bad!!!!!
ocean20	posted 01-07-2005 12:18 ET (US)          JP, Thanks for the elaboration and I wish I can offer you advice on the meds but I am not an expert and trying to taper off pred. myself. Am not sure what the alternative to Advil. I used to take aleve but stoped since the last publicized scare. As for Prednisone, the wonder..addictive drug, I feel that as it helps, it interfers with the functional dynamics of internal organs. I am yet to read a satisfactory article on the imapct of having the adrenal glands going dormant (sleeping) for long time and how that affects the body (since more than 4-5mg a day puts the gland into a sleeping mode as I am told). As for swelling, I do experience that in my knees when I lower the pred. dose. You seem to have tried quite a few medications that worked and then did not work for 8 years. This shows that doctors will prescribe anything since their bodies are not the ones to practice on! Maybe I am a bit harsh on the MD's, and some are good. But, in general, MD's are turned into drug salesmen and saleswomen by the large pharmaceutical companies.They give them grappy subjective papers, bomabardd the airways and TV's with advertisements, distribute free samples, and MD's do the rest to increase their profits. I just heard of a new RA drug that I do not recall the name, maybe there is hope...maybe it is another drug that will not work as well as prednisone!
JoannaCS	posted 01-07-2005 10:26 ET (US)          JP, As I taper - (still at 10mg though) the pain is from both the disease as well as the withdrawls. My joints seem the hurt worse as I lessen the mg. and I have muscle aches from the withdrawl symptoms. They get better if I just hold out. This last drop has taken about 2 1/2 weeks for me to feel better. My doctor wants me to lessen the mg. with longer time periods. He is letting me decide when I am ready to drop each time. But yes..just hang in there and the pain will get better. Especially if you are trying to replace the prednisone with another drug therapy. I am using Arava (20 mg a day) and Ibprofin ( 600 mg 2-3 times a day.) I want to get off the stuff so bad though. I feel like it has taken over my body. I think prenisone is a temporary fix.
ocean20	posted 01-17-2005 21:06 ET (US)          Here is another side effect of prednisone that my doctor confirmed to me today: Kidney stones! I have been wondering why I had so many kidney stones (Had an attack 10 days ago...very painful). He told me today that because prednisone sort of (melts, thins) the bones, it takes the calcium and puts it into the system where it has to go through the kidneys and collects there. I have been on 10 mg/day of prednisone for about 2 years.

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