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Author	Topic:   Prednisone Taper- too much too quick?
DianeD	posted 07-04-2005 16:46 ET (US)      My rheumy has agreed to trying to taper down the prdnisone I've been taking (10 mg/day) for about 3 years. He has suggested that I drop down 1mg every 3 weeks. In reading other posts about this, it weems as if this might be a sure-fire way to out me into a flare or worse, full crisis.   For those who have experience with this, is this too much of a change? Too rapid? What do I need to be concerned with in terms of side effects-- I certainly know what happens when I miss a single dose... what shoulod I caution my partner about?   Posts or email please- I'm scared!
Leslie1215	posted 07-04-2005 18:41 ET (US)          I know people have different experiences with prednisone and other steroids, but personally, I don't think that is too quick. My doctor always has me go down in 2.5 mg intervals every 2 weeks, but I do have to consume more water and I usually need some caffeine to help stave off the shakes that come from systemic prednisone withdrawal symptoms. You may need more sleep and rest for awhile, and be careful not to overdo it while your body is adjusting. I have been on as much as 80 mg a day for three months at a time and I am ok off of it now.
courts	posted 08-16-2005 10:35 ET (US)          Diane, I have been on prednisone for 9 years. I was at 10mg in the spring of 2004 and started tapering down. My doc's method was to alternate days - so I would do 10 and 9.5 every other day for two weeks. Then I would do 9.5 for two weeks. Then I would alternate 9.5 and 9 for two weeks and then do 9 for two weeks. I like the method because I can barely tell it's happening but it has taken a long time. In January and February I was at 4mg and feeling really crappy and decided to put the process on hold for a while and go back up to 5mg. I started tapering again about a month ago and I am back down to 4mg and feeling fine. I would rather take it really slow since I've been on the meds for so long. It sounds like your doctor is being reasonable by waiting 3 weeks for things but I like the alternating method. I feel like it gives my body more time to adjust. And I like being able to cut the pills in half. (Though I skipped that step this month - I just alternated 5 and 4 for two weeks and went to 4 and it worked out well.) It's a frustrating process but so exciting to be able to come off of the prednisone! I hope you're doing well. Of course, you wrote this over a month ago so who knows what you're at now! Oh well. Courts
DianeD	posted 08-17-2005 23:04 ET (US)          After the blinding headaches and feeling like the hot rocks returned to my feet, I finally started to adjust to the lower dosage YIPPEE!!! It only took 4 weeks, but at least I can stand to open my eyes again :-)   I'm so glad to see the suggestion about alternating- the fluctuations from trying to split generic 1-mg tablets that shatter ratheer than split might just make the next jump tolerable (either that or I hit the doc up for a Rx for 0.5 mg cuz I have to be able to think). It's so fun to try to swallow 9 poison pills in teh morning, that's for certain!   Thanks much- at this rate, I hope to be down to 5-mg by year's end. Hopefully I can reverse some of the bone density, hair loss problems as well!
ocean20	posted 12-19-2005 18:50 ET (US)          DianeD Can you share your experience with tapering off prednison..successes, defeats, side effects, flare ups...etc.
rocinda	posted 12-20-2005 09:21 ET (US)          My doctor has always beeen very cautious-I have a flare every August and he will put me on a 3 day dose-10 mg each-I think with me -my mind thinks I really need it-years ago when I was on gold shots-I would get stiff when I thought it was time for a shot- Jeanne
DianeD	posted 01-09-2005 18:15 ET (US)          THe balancing act I call my career caused me to hold tight when I got down to 8 mg/day. Everytime I tried to drop to 7.5, I started to flare-- and not just a little twinge, but flat-out can't hardly move flare. Once I learned to alternate doses, I was able to circumvent the headaches & stomach issues with tapering, but there is no way that I can function when it hurts too much to move. To add insult to injury, I found out that the steroids were keeping the inflamaion in my sinuses at bay- and in dropping the dose I would aslo start to get horrific inflamation, which would lead to bacterial infections... thanks to a CT scan and an understanding ENT, I think that I may end up at this level- balancing, if it were, until I have no further option but to put my system through the hell of dropping the dosage.   Now I have to be able to convince the rhuemy that working is preferable to bone thinning, bruising and all those other lovely side-effects of long-term steriods.
ocean20	posted 01-09-2005 19:24 ET (US)          That is real amazing how a 0.5 mg of prednisone drop from 8mg can cause the flareup! This yell me and I hope those researching the issue, that that the balance reached in the body is so sensitive and critical that eve a drop of 1/16 the dose will cause the body to go haywire. I hope someone takes a note of this as it might hold a clue to the ultimate solution/trearment to taper off this drug. I woulkd also like to see if someone experienced fever during flareup. It happened to me today but the first time and not sure if it was due to a mild flareup or due to a common cold that I have been having. Also, I have not taked folic acid and is it a requirement to go with the prednisone?
Carolan	posted 01-09-2005 21:23 ET (US)          Folic acid is commonly prescribed for people on methotrexate. It probably won't hurt you to take a little extra, though, if you think it might help with prednisone side effects. It's worth a shot. :)
Brianna	posted 01-11-2005 14:25 ET (US)          Hi, I am 31 and was diagnosed with RA 2 months ago, I have been on prednisone since and gained 25lbs, so I am very anxious to get off. I just had my 2nd child and it took the doctors 3 weeks of pain to figure out what was wrong, they kept saying water retention, go figure, I knew it wasn't and kept telling them, so needless to say I have been in pain and getting depressed from baby weight and steroid weight gain, pain and the biggest I can't play with my childen like a normal mom. I went for a check up monday and my doctor started me on a drug that chemo patients use and told me to keep taking 15mg per day for another month, the antibiotic he has had me on is not working along with the prednisone. I am reading everyones situations here and I did not realize it takes a long time to taper off this stuff, I almost started to taper off myself just cuz I can't stand it anymore but reading this I should just listen to my doctor. I am having a hard time dealing with all of this and I was wondering if anyone had advise of how to think more positive, cuz things are not looking that great fo me, other than having 2 beautiful, healthy children and a loving husband- which I am upset about too cuz as you know feeling sexy is not there after a baby, now I have even more weight from prednisone. Please help if you can.
Printcess	posted 01-11-2005 15:09 ET (US)          Brianna - There are so many other drugs out there besides prednisone. I took steriods for years and got really fat. I also got very depressed. I took myself off the drug, which is NOT what I'm suggesting you do. In my opinion having a disease like RA can be difficult enough to deal with, that getting depressed about weight is more than enough. It's your body and you have choices. Tell your Dr. that you want to taper off as quickly as you can and try something else. Just because they perscribe a drug does not mean it's for you.
ocean20	posted 01-11-2005 18:59 ET (US)          Brianna, How much prednisone are you taking? Just think that there will be better days ahead since you have the foundation of a good supporting family. Yet, I belive it is far easier to taper off pred after only 2 months compared to many of us who have been on it for years (about 3 years in my case).
Carolan	posted 01-12-2005 10:56 ET (US)          Hi Brianna,   Hey, that's my daugher's name. :)   First of all, it's great that you have a diagnosis. RA can be difficult to diagnose and some people go years with classic symptoms but no positives bloodwork results to back it up.   It can take some time to find the right combination of meds that work for you. No two patients are alike. It takes patience, but I know that when you have a baby and you need to feel better NOW, it can be frustrating when everything in your body seems to be going haywire at once.   I'm a little confused about the use of antibiotics. RA isn't a bacterial infection so I'm wondering why your doc thinks an antibiotic would help.   I've had two heatlhy children as well, who are now 13 and 19. Post-partum flares can be vicious and hard to bring under control. Add to that the stress of just having the baby, and it's a recipe for feeling bad all the time! I flared within hours of having my babies. It wasn't fun, but I got through it and so will you!   Try not to put too much pressure on yourself about the weight. Be gentle with yourself and cut yourself a break. Drink tons and tons of water and watch your salt intake. Focus on that beautiful baby and taking care of yourself. If the prednisone is helping you function and take care of your baby, then use it for now. The weight can come off in its own good time when things settle down and you are able to taper off.   Definitely don't taper off on your own without telling your doctor first. What chemo drug did you start taking? Is it methotrexate (aka Trexall or Rheumatrex)? If that's the one, it may take several weeks before you start feeling the full benefit of it, so you may need to stay on the prednisone for now. Like I said, the physical, mental and emotional stress of having RA on top of caring for the demands of an infant, are BIG factors in your pain level.   Don't be afraid to ask for some help with your baby. If you have friends and family nearby, reach out to them! You're not being a bad mom for asking for help.   Hang in there! Carolan
Leslie1215	posted 01-12-2005 13:43 ET (US)          Carolan, using antibiotics is actually a new thing. Something about them causes an anti-inflammatory response in the body. My rheumatologist showed me a study about using various tetracyclines to help RA.
Brianna	posted 01-12-2005 20:15 ET (US)          Hi everyone! First, thank you for all the reponses, it made me feel like I am not alone. My doctor first put me on Minocycline which is an anti-biotic that he thought would work for me but I am still having lots of pain and have had my knee drained twice already from all the fluid, so he said this antibiotic is not strong enough, and I just had my first shot of Methotrexate on monday, I have to go every monday, not sure for how long but my doctor said to keep up on the 15mg prednisone and the minocycline, also started on folic acid, calcium with vitamin D and fish oil capsules, my diet has to consist of salads, chicken, fish...I think I am going to buy a cook book because this diet will get very boring for me soon. My doctor said to try a gluten-free diet, no red meats, cereal, carbs, sugar, etc. All the foods I like to eat, so on top of all the medicine, my eating habits need to change. It's alot fo me right now, I feel like I am almost in denial and can't quite figure out how to except it with a positive attitude, I am a person that needs light to be more positive and I have not seen it yet. I have been reading so much stuff online and I am really scared, I do not see much success on the disease or read much positive insight on it. Maybe it's because I am only 31 and when I first went to the doctor and he told me I had RA, I did not think all this was a life changing disease. It hit me hard and I can't tell you how many I have cried because of the pain or the fear I have of not knowing am I going to get better. I was tellng my husband how you all have been on prednisone for years at a time and I can't imagine myself there, I pray I am off it soon, but reading all your situations it almost seems like I am not thinking realistic. I know everyone is different, and I truely feel so sad for those of you on prednisone for so long, I do not think I can handle it, how do you? Should I prepare myself for many more months of it, and how? I did not realize I was going to be on it for 2 months, let alone for years like you, like I said when I went to the doctor and he said RA, it was not much thought except just take the pain away, now that I am learning of the disease and all the changes, etc, its very depressing. Are any of you on Methotrexate? And if so, do you take prednisone too? Does anyone feel better? What can you eat other than salads, fish and chicken? I can't thank you enough for your help! I also called the Arthritis Foundation today to get all info on RA, I need to see some positive soon, or I will need to start anti-depressants too. I have asked my doctor a few times about changing me to something other than prednisone and he stated that not until its under control then I can think about alternative medicine. I also did not realize that taking 14mg opposed to 15mg would make a difference but I read even 1/2mg can cause a flare up. Also I was thinking if I should go for a second opinion, or should I trust my doctor has his best interest in getting me better? Did anyone get second opinions? My husband thinks I should get another opinion but I do not want to upset the doctor who has helped me this far. I had gone to my family doctor, his assistant, my Gynecologist, a chiropractor, the Emergency room and no one could figure out what was wrong, other than water retention because I just had a baby, but 3 weeks had gone by and I could not even walk, hold my baby, nothing and I went to my family doctor again crying and telling him it is not water retention, he then asked if everything at home was ok... I even swore at him saying I am not going through post pardom depression, I have been in pain and left the office, on my way home I stopped at a Rhuemotolgist in my town and the doctor took me in the next day. Even through my pregnancy, I had a couple of fingers that were doubled in size and so painful but I was told its only water retention, would made sense to me then but not 3 weeks after giving birth. My first trimester, I had only gained maybe 8lbs and I could barely walk, it did not make sense, I gained much more on my first pregnancy and did not have pain like this ever. I could go on and on, sorry. Again, thanks for any reponses, I really needed to hear some insight of others who have RA.
Carolan	posted 01-12-2005 21:06 ET (US)          Brianna,   I've had RA since age 5 and am now 46, and I'm here to tell you there IS life after diagnosis! I believe there is a good chance you will eventually get your flare under control and will be able to wean off the prednisone.   In the meantime, please stop scaring yourself by reading everything on the internet. You don't need the added stress right now. Stick to a few trusted sources like the Arthritis Foundation and this board, and maybe Dr. Weil's site.   From what you told me, it sounds like your doctor is on top of things with the combo of meds he has you on. If you're concerned, a second opinion is fine. You doctor shouldn't be offended and should encourage you to do it for your own peace of mind. I've never had a doctor be upset about my seeking a second opinion.   As for the dietary changes... well, you'll find all kinds of schools of thought about that. Avoid this food, eat that food, bleh. It's confusing. For now, focus on eating what's healthy - fruits, veggies, lean protiens, fish, whole grains, dairy, etc. Go for organic foods if you like. Watch the junk food, the fried food, the highly processed foods, etc. - I think you know the drill. Drink lots of water. :) Maybe later on, try altering one or two things, like dropping certain foods, or avoiding gluten. Trying to make major changes in your diet all at once isn't easy for anyone!   I am currently taking methotrexate and have been on it for, oh, about 15 years. I take it by mouth, though you can take it by self-administered injection, like how diabetics take insulin. I also take Mobic (an anti-inflammatory) folic acid, and Fosamax (for bones). I have a flare once or twice a year, at which time my doc gives me a one-time intramuscular shot of liquid prednisone which quiets the flare and leaves my body gradually over time, so I don't have to fool with tapering off pills.   Over time, the methotrexate has lessened the frequency and severity of my flares, making it easier to bring them under control. In between flares, I take fewer meds than I used to before the methotrexate. It seems to even me out. With careful monitoring of your liver and kidney function through regular bloodwork, this med can be taken safely long-term. I'm sure your doc told you not to get pregnant while on it. I went off it for several months before attempting to get pregnant, to make sure it had cleared my system. My son was born healthy. :)   Certainly, life as you knew it has changed. It isn't over, it's just changed. You have to think about things that "normal" people don't have to think about. A lot of people who prided themselves on never even taking an aspirin, suddenly find themselves facing an array of strange and scary medications. Take it one step at a time and you're going get through it!   If you'd like to email me, it's carolanivey(atsign)yahoo(dot)com.   Hang in there, Carolan
elmode	posted 01-13-2005 09:16 ET (US)          Hello to all, I hope you are all fine. I went to my doctor today and he told me that he is happy to see that the swelling in the ankle is reduced but he wants to win it off. He believes that the swelling in the ankle can be eliminated so there will not be any damage in the ankle.So he increased the dose of methotrexate. Since now I took 10 mg of methotrexate per week (2*2.5mg on Monday and 2*2.5mg on Tuesday). It is 3 months sinc eI started methotrexate. Now he wants me to take 15mg per week (3*2.5 mg on Monday and 3*2.5mg on Tuesday). Do you believe that this is too much??? I don't take prednisone and I am ok without it.   Best Regards to all of you!!!!!
Carolan	posted 01-13-2005 09:45 ET (US)          Hi elmode!   I'm on 15 mg/week and have taken as much as 20 for short periods. My doc says that relatively speaking, that's not a high dose and there is room to take more if needed.   Some people here have reported yucky side effects taking less; it just goes to show that everyone reacts individually to the same medication.   Sometimes I can get by with 10 mg but right now, 15 is where I'm at. Any more than that, and I notice some hair falling out. Yikes!! But at 15, my hair seems to be staying where it belongs!
Brianna	posted 01-13-2005 11:02 ET (US)          Hi Carolan- I really admire your strength! I read all you had to say to my husband and I stated this is what I need, to see there are others like me and are living happy. Although I do not feel good right now, I want to think more positive, its just hard. I can't believe you were 5yrs old, I can't imagine being that young and dealing with this, so you must be an expert on dealing with pain...I try to picture myself 5 yrs from now dealing with this, and it only makes me angry that I have to. My diet this week has not been that bad, but I feel very limited, so I do hope that changes once this is all under control, my husband is eating the salads with me :) which makes its easier. I walked yesterday for about 25 minutes and everything, especially my feet and ankles hurt more, they say to exercise but it makes it worse, so I feel lost there too. Last week I bought an elliptical and did it for 2 days last week for only 10 minutes and that thew off my whole week, so this week I tried just walking, and even that hurts me the next day, any suggestions? Thanks again-
Carolan	posted 01-13-2005 14:47 ET (US)          Brianna,   Believe me, it took me a while to arrive at the more peaceful state of mind I'm at now! I still have my bad days, and days that I worry about the future, but it isn't as bad as it used to be. It helps that my disease has settled down. I went from being in a constant state of flare up until my early 20s, to having a couple of flares a year that can be controlled with meds and a better mental attitude.   I went through every stage you are going through and will go through - it's very much like a grieving process. I was fortunate in that I had more time to adjust to life with RA. It is so, so much harder for older people who up until that point have been living a normal life, with jobs, families, busy lives...and then bam, be hit with this baffling disease.   And it's a relatively invisible disease, as well. You can be feeling like crap but anyone who looks at you thinks you look fine. You can tell someone you have arthritis and they'll say something "helpful" like, "yeah, I have this pain in my pinky finger and the doctor says it's arthritis." You just wanna slap 'em! LOL   As for exercise... if you are still having pain the next day, I would back off and start more slowly. Walk 10 minutes, then rest and see where you are the next day. If it only hurts a little, do the 10 minutes again, rest, and monitor. Add a few minutes - another 5. Keep gradually adding minutes. Swimming is great exercise for us creakies, as long as the pool is warm. The elliptical sounds like a great idea! I got on one once and realized just how out of shape I was - it was harder than it looked! Make sure your footwear is good quality, and you can try wrapping your ankles in ace bandages, or using a neoprene ankle brace. I use these a lot when I go hiking for extra support and they also keep my feet from swelling.   Oh, that's another thing you can do - using joint wraps and braces. The gentle compression helps hold swelling down, and they keep the joints warm.   Some pain during and right after exericise isn't necessarily a bad thing, but if the pain persists for several hours or into the next day, then you did too much at once. Exercise is tricky when you're flaring. You do need to keep the joints moving, but darn it, it hurts! You are going to have some pain when you exercise, but you will learn to put up with a certain amount of it.   I have gotten to the point that a certain amount of pain is like white noise - there, but you ignore it. Anything that rears its ugly head above that level, I pay attention to. :)   Hang in there!
drugsleuth	posted 01-16-2005 04:06 ET (US)          Thank you all for your entries. I'm new to this website. Four and a half months ago, my daughter (16)received a routine Hepatitis A vaccine and four days later she came down with severe hepatitis (it lasted 5 weeks) and severe arthritis that still exists. Doctors don't want to admit the vaccine can trigger an autoimmune response, but I have read otherwise. Her liver returned to normal within about a month, but at the same time her liver was recovering, arthritis symptoms got worse to the point where she couldn't walk. A Rheumatologist put her on 40 mg. of Prednisone and Plaquenil. She tapered to 15 mg. within a week and slowly tapered to 6 mg. within 2 months. In the past four months, we've been to 5 Rheumatologists, and everyone has a different idea on how to bandaid the symptoms. I want to find the cause.   Initially, my daughter's RH factor was negative, but she tested positive with some lupus-like antibodies. Of course doctors wanted to diagnose her with Lupus, but she doesn't meet the minimum criteria for a lupus diagnosis. It might be drug-induced lupus from some long term acne medicine my daughter took (Minocycline.) I've also read that lupus-related antibodies can appear when bacteria or viruses cause arthritic syndromes. To complicate matters, my daughter and I returned from a 10 day trip to Spain two weeks before all this started. She alternatively may have been exposed to Salmonella, which can cause arthritis that lasts for many months.   The bottom line is, no one really knows what caused this arthritis in my daughter and the doctors only care about treating the symptoms. Very frustrating. Recently, I was told my daughter tested positive for RH factor, which means she may have RA afterall or it could have been a false-positive. My daughter has been on low dose Prednisone (10 mg. or less) and 200 mg. of Plaquenil for the last three months. Two months into her condition, she was tapering off Prednisone slowly and got down to 6 mg. with no trouble. Then, wham. She had a gradual increase is morning stiffness and she was getting worse each week. We finally discovered she had an infected impacted wisdom tooth and it needed to be surgically removed immediately. I think the infection made the arthritis symptoms worse.   The Prednisone was bumped up to 10 mg. and she slowly tapered back down to 8mg., none of which really took care of the arthritis completely. A few weeks after that, she contacted a really bad cold which lasted two weeks. (She is an athlete and about the same time she increased her water polo/swimming work outs, she had the flare at 6 mg.) From Nov. 21 to Dec. 21st, the Prednisone level was 10 mg to 8 mg. The doctors wanted to put my daughter on CellCept or Methotrexate to get her off the Prednisone, but I wanted to try her on the full dose of Plaquenil first before going to more toxic drugs. We increased Plaquenil to 400 mg. on Dec. 1st. But then I started noticing she couldn't sleep through the night for the first time and her muscles were extremely sore, especially her leg and shoulder muscles at night. She started to lose her appetite. I read these can be side effects of Plaquenil...but it also sounds like it could be caused by the Prednisone taper??? She didn't have this severe of symptoms when she got down to 6 mg. previously. I figured it had to be due to the increase in Plaquenil. The doctor told me I could take her off that drug completely for 3-4 days to determine if side effects were causing the problem. I asked him if it could be caused by the taper of Prednisone and he said, "no." At the same time I stopped the Plaquenil, I bumped up the Prednisone to 15 mg. so my daughter could function. I also started her on a natural supplement I found on the web called Mirac. I found it on Christmas Day at www.miracinfo.com. There are some pretty amazing testimonials on that site and I am holding off on the Methotrexate until my daughter gives this product a chance for 4 weeks. After being on Mirac supplement for 10 days, as well as the being on 15 mg. of Prednisone and off Plaquenil completely, my daughter has improved radically. She sleeps through the night, has no more muscle soreness and leg pains. I am not sure if her severe symptoms in December were due to the Plaquenil side effects or the Prednisone taper to 8 mg. I'm beginning to wonder if all these problems at 6 mg. and 8 mg. are due to adrenal insufficiency? Can my daughter have that after only being on Prednisone for 4 1/2 months? I am really hoping I can get her off this drug (Prednisone) and I hope the Mirac will help. In the last five days, my daughter has 60% less stiffness upon waking, but I am still worried about tapering her off the Prednisone too fast. I do want her off it, however, as it sounds like the longer a person is on it, the harder it is to get off. Any advice on how to taper at 15mg., after being on Prednisone for 4 1/2 months would be greatly appreciated. (Remember, my daughter has been on 10mg. or less for the last 4 months and only bumped to 15mg. 10 days ago.) The doctor doesn't want her to taper Prednisone until I put her on Methotrexate for three weeks, so of course he will not give me advice n how to taper. My daughter said she feels good and thinks she can go down on the Prednisone, so I don't see the need to start Methotrexate at this point. I was thinking of going down to 12.5 mg. for two weeks, then 10 mg. for two weeks, then down by 1 mg. every two weeks after that, so long as there are no flares. Does this pace seem too fast? Thanks for any help you can provide.   Sorry this was soooo long.
Carolan	posted 01-16-2005 09:42 ET (US)          Sleuth, I sent you a reply to your email. :) Now that I've read your post, you can ignore my question back to you!   As I said in my email, it isn't unheard of to have to taper down by half or a quarter of a mg at a time. How fast is too fast? That's as individual as the person taking it.   I'm wondering, does RA or some other type of autoimmune disorder run in the family? RA runs in my mother's side of the family, and my symptoms started at age 5 after a common childhood disease, I think it was chicken pox or measles. People with the predisposition may go long just fine until a seemingly innocuous virus or infection triggers symptoms. Then again, RA can pop up in families with no history of the disease.   I understand your desire to root out the cause of your daughter's disease, but the truth is, no one can pin down for sure what causes RA and like diseases. All we know is, once the disease is triggered, for the majority of patients there's no putting "Pandora back in the box". That's why it seems to you like the doctors are only interested in treating the symptoms, not the cause. The cause, at this point, is moot.   Personally, Placquenil never did a thing for me. I don't know of anyone else on this board that uses it - although I could be wrong and I hope they will speak up if I am! Methotrexate is something I have been on for over 15 years with very good results and no serious side effects. With her previous hepatitis, I can understand your reluctance to put her on it, though. I get bloodwork every two months; her doctor may want to monitor her more closely if you do put her on it. My own doctor says, and I agree with him, that methotrexate is preferable to long term, chronic use of prednisone.   Is she getting her eyes checked regularly with the Plaquenil? Vision changes are a side effect.   I would urge you not to change doses of her meds without at least informing her doctor. A doctor not fully informed is a doctor who can't treat her effectively. Even if it's just a phone call saying, "hey, she's not doing well at X mgs, I've increased it to X for a while".   Don't forget that your daughter has a say in this, as well. She may be a minor, but at 16 she has a right to say what she does and doesn't want. She needs to feel like she has some kind of control over what's going on. :)   FWIW, I had sleep problems and muscle "twitchiness" when tapering off prednisone pills. Her side effects are her side effects; just because the doctor hasn't had a patient with that side effect before doesn't mean it isn't caused by a certain medication. For a full list of possible side effects, read the medication's package insert or ask a pharmacist. When I was about her age, they had me on an NSAID that I was convinced was causing me insomnia. The doctor kept saying no, I just needed counseling. I did my own reading and found that the stuff was full of caffiene. Duh.   I will post here the two links I sent you in the email - one is about the use of corticosteroids, the other is about reactive arthritis.   http://www.midwestarthritis.com/html/steroids.htm   http://www.arthritis.ca/types%20of%20arthritis/reactive%20arthritis/default.asp?s=1   Welcome to the boards, and keep us posted about how she's doing. I would encourage her to post here, as well. There are a lot of younger adults here who could give her someone her own age to talk to!
drugsleuth	posted 01-16-2005 13:25 ET (US)          Thanks, Carolan. My daughter's grandmother on her father's side was a twin. The woman has some form of arthritis that began at the age of 50. She thinks it is osteoarthritis, but she was never tested for lupus or RA. Her fingers are deformed on both hands. I think it is called trigger finger, but I'm not sure. She has always had a very poor diet. Her twin sister had childhood onset diabetes at 12 and died by the age of 30. I suspect there is some genetic autoimmune link on this side of the family.   The Rheumatologist is aware of me increasing my daughter's Prednisone to 15 mg two weeks ago, and he told us to stay put at that level until the Methotrexate kicks in after three doses. I agree, it is probably better to be on Methotrexate than be on Prednisone long term, but I didn't really want my daughter to go there if she didn't need to. We both made the decision to wait and find out if the Mirac works first. I appreciate the guideance on how to taper. My daughter has been able to determine when to go down in the past, so I will let her be the judge. The first two months she did beautifully, tapering from 15 mg. to 6mg. Unfortunately, all hell broke loose at 6mg. Maybe she went down too fast...or maybe the massive tooth infection that was occurring in her body at the same time put her into the flare.   My daughter gets lab work every month and she is due for another set of labs in a few weeks. I will have her Primary doctor order the labs. If the SED rate and CRP are not better, we will start the Methotrexate. The most competent Rheumatologist is 100 miles away and it will be a journey to see him again.   I will tell my daughter about the Creaky Board. Thanks.
ocean20	posted 01-17-2005 21:04 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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