Please excuse all of my constant, newbie questions, but I have a million of them :)
I have been in a flare since Easter. I did a Medrol dose pack that following Thursday-Tuesday. It helped a little, but not much. Everything got worse again after I finished it, and I called the dr back on Wednesday and she called today to say she called in 5 mg prednisone to take once a day for 2 weeks and then every other day for 2 weeks.
5 mg is a very low dose. can this actually be effective? Or is she giving me a "sugar pill"?
Depending on the extent of your flare will determine what the Dr. will prescribe. Most Rhuemy's are reluctant to give high doses of any cortico-steroid because it does come with some nasty side effects. Not as bad as other meds, but it is (according to my Rhuemy) the one that works the fastest and offers the quickest relief. For long term 5mg is not an unusual amount. And 4 weeks after already being on it, is a pretty long time for steroids.
Believe me when I tell you that you hope that will be effective and give you the relief that you are looking for.
Even after 2 weeks you might experience some side effects, so I hope this works for you.
Well prednisone is surely NOT a sugar pill It really depends on your symptoms as to what drug and what dose 5 mg is enough to tone down a flare in many cases
It is the hope that the flare can be treated with the lowest dose of a steroid as possible. Steroids affect every system of the body. Low dose as short of period as possible. That’s the way to go. Good luck.
Make sure you are using as much self-care as you can to fight the flare along with the conservative medication dose… Sleep plenty: reduce stress, etc. I have been on a dose of methylpred (lower side effects!) that’s equivalent to 20 mg prednisone for 4 months running and I’m still having frequent but fortunately low-grade activity, and I believe it’s due to the current stress I’m under in my personal and financial life… At least it’s milder than what was building steadily over the full 12 months before starting the steroids, so in that sense it’s providing much-needed relief, but to really get better we have to balance out what’s driving the flare. The drugs merely beat it back and restrain it for a little while, but we have to take control of resting and eating right and avoiding triggers to make it through the healing period and then work to maintain and stave off the next flare. I have far to go still, but I’m tapering ever-so-slowly off of the steroids and trying to hold myself accountable to rest through the breakthrough symptoms. (plus I just started infusions of rituxan, fingers crossed it brings a better remission!)
So if you have a job, call in sick, if you have a family that lives with you, ask them to cover for you in the household, if you have something that helps you relax, do it and hold tight to it. I try to focus on how lucky I am to have parents who can afford supporting me all year and who are making long-term arrangements to be my back-up (I’m nowhere close to married, haven’t had a relationship longer than 4 months for the past 5 years! And entirely too overwhelmed to date right now…) I still lose it when something happens to imply they don’t think I’m all that sick and I’m “working it” to get their sympathy and take their money… The very last thing I want is to be on their bank roll, and I don’t have another option! So I’m in therapy to deal with my emotional reactions to them, since there’s no way to change their behavior at the moment.
People in this group have taught me some amazing things about their resolve to get through things, most of all when healthcare, family and employment tear you down just when they should be supporting you most. It’s so important to realize our greatest responsibility is to taking charge of our needs and finding the skills and will to let outside criticism roll off of us (like the serenity prayer… But to accept the people I cannot change and learn how to not let their bs ruin my day!) Remember you are a valiant champion over your disease, plus any insecurities, when you ask someone else to wash the dishes tonight, just like you’re a warrior every time you wash the dishes in a “normal” period between flares when your hands still hurt more than anyone wants to think of while you do it. Be as proud of yourself for fighting for rest as you are for pushing through daily challenges in your remissions, because you owe it to yourself and those you love to get back into remission as well as you can be!
I hope it helps, and if it’s not doing enough, the good news is there’s still room to go up But beware, even if the side effects don’t bother you outright, they do take a long term toll (type 2 diabetes, for one example, neurotoxicity for another), and it’s really hard to come off of them!
You want low dose prednisone just to make it bareable. I learned, I will always have pain, joint damage and spasms, so, if I can just make it bareable so I can function, I'll take it. My doctor gave me a 5mg prednisone as my "back up" or "emergency" method. I received 60, 5mg prednisone pills for emergency purposes only, once a year. This allows me to manage when I need the pills and use them sparingly plus minimizing damage, I guess, to my body. So, I learned how to adjust and use other OTC supplements for managing pain and discomfort during flares.
To be honest, I'm not sure I ever really come out of a flare. I have not experienced a day without pain in years, but I do have weeks at a time that I can barely do work around the house. I take 5mg predisone along with a bunch of other meds, but when I'm feeling my worst, my rheumy gives me a Solumedrol infusion. She says that the IV is more efficient. Hope you feel better soon, sweetie!
Good point, artchick! One thing to keep in mind is that each “flare” is a relapse, but sometimes the recovery isn’t complete and the disease is steadily worsening over time. If you hear what Tez has been through, there is a lot that can build up over the years. However, some people are stable over the long term with a few fully-reversible flares a year, some go years and years between any flares at all. Lupus is “predictably unpredictable” and as LFA has started calling it “the cruel mystery”…
We have to be ready for anything, prepared to do everything and accustomed to getting nothing despite our efforts to get better. But sometimes something just clicks and we enjoy a period of relief, in some cases long enough and well enough it feels like the disease is really gone! A few years before I got sick, I used to perform in an aerial acrobatics troupe. I am getting back into decent enough shape that on a good day I could do some of my old tricks (and pay for it the next 3 days!), but in no condition to really train and perform. I don’t even have a job right now due to relentless fatigue and repeated flares. But one of my troupe-mates was a lupie, mostly active in her teen years with severe nephritis that left her with reduced renal function (to the point that she’s not advised to carry a pregnancy), yet was at a point of working super-full-time as a Seattle Opera stage manager (intense; managing the literal original divas!), a side hobby-career as an aerialist, plus a liking to cycling with her pro-cyclist husband. She considered a 50 mile bike ride a quick & easy one. 50, 5-0. I’ve never ridden more than 10 miles at once, and in my youth and teens before I was sick I was a heck of an athlete! Lupus is sure a mystery, alright.
However, there’s hope… Another thing I did in my life before becoming a full-time lupie was work for autoimmune disease research (including lupus, what do you know! I didn’t know I had it, but I was increasingly having symptoms and getting a little worried but also getting dismissed by docs till it got much worse!) I am not an immunology expert, I just worked on admin and patient contact as a coordinator, but I have a bachelor’s in biosciences and did some of my own light reading on the progress with biologic therapies (as in the rituxan I just started, which is approved for RA but still off-label for lupus… Not because it doesn’t help in lupus, which it’s likely to but not confirmed, but we “don’t know” because funding for lupus research ALways lags behind RA! Grumble.) The good news as I see it is that they are rapidly gaining an understanding of the faulty regulation of our wayward immune systems, and that biologics may progress from steroid-sparing, remission-inducing treatments to true cures! (my semi-educated guess is about 5-15 years out.) The CATCH is that to be “cured” with such a rescue treatment, you would need to NOT accumulate any lasting damage first. Even if the autoimmune cycle is eradicated, corrected, cured, that kidney damage my friend has ain’t goin away. So take extra good care, and remember there’s hope for both a cure and simply well-being within the context of continued disease. I promise when I get some more spare time I’ll interview some of those researchers I worked with and write a fabulous post for your enrichment… But for now I’m doing my best to achieve my own remission!
Brynn~ Wow! I have never been into exercise, or physical "fun" in any way. I am one of those eclectic, sensitive artistic types. haha
Thank you for sharing your experience and your friends experience. I need constant affirmation that this isn't all in my head. I was finally diagnosed a year ago after YEARS of being told it was depression. So now I have scars on my face from cysts that I feel was from being out in the sun and the lupus. Since starting plaquenil, I haven't gotten any of the seriously huge cysts. I wish I had known about lupus all those years ago. I might have taken more action in getting properly diagnosed.
You would be surprised how 5mg. Will work. I have been in it for months now. I do still get flares but not as long or as bad now. When I do flare I get injections or me drool dose packs on top of my usual 5mg. If I did not take the 5mg daily I would still be in a really bad flare I have been in for almost three years. I fought steroids but its the only thing that has really helped me. I am also on Methotrexate, Plaquenil and Orencia. So all that combined with the 5mg steroids and I am finally getting a little relief. Just be sure to let your doctor know how you are doing on it. Hope you are better soon!
Wow tinapet…good for you…that combo of drugs did not work for me…
I would be persistant with your rhuematologist…i am on 20 mg of predisone and coping ok…
Get more professional support…good luck…
We are here for you…
I have been on them for FIVE years and cannot get off of them as hard as we have tried. Down to between 5 mg to 20 mg depending. Also on Cell Cept and Plaquenil . I was on Benlysta but it did not halp and actually did more harm than good. I have been on Methotrexate as well. I have not been on Orencia, but would like to know how it works for you ?
whathappensinvegas said:
Jcangel3,
Depending on the extent of your flare will determine what the Dr. will prescribe. Most Rhuemy's are reluctant to give high doses of any cortico-steroid because it does come with some nasty side effects. Not as bad as other meds, but it is (according to my Rhuemy) the one that works the fastest and offers the quickest relief. For long term 5mg is not an unusual amount. And 4 weeks after already being on it, is a pretty long time for steroids.
Believe me when I tell you that you hope that will be effective and give you the relief that you are looking for.
Even after 2 weeks you might experience some side effects, so I hope this works for you.
I finally love the Orencia. It took about 8 months to finally get some relief from it. I have tried Rituxan and Humira as well but they didn’t do anything but make me worse. The Orencia is a quick infusion too. I heard that they were going to make a self injectable form of it too. Not sure if its out yet. I tried Orencia as a last ditch effort before trying Benlysta. But I’ve heard like you, that not too many actually benefit from it. I had headaches at first with the Orencia that were pretty bad but after about four infusions they started to decrease and now I don’t get any and feel just fine after my infusions. I can tell when it’s time for my next on about a week before as I start to get stiff in the joints and an increase in joint pain. But it’s soooo worth the three weeks of feeling better!!! I think the trick is to find which meds will work for the type of immune over activity you are experiencing. There is B cell mediated, T cell and so on. I would live to see the day each person could get their blood drawn and tested to see what exactly has gone haywire in our immune system and then get treated accordingly. Maybe someday soon.
Anyway, I recommend it. Give it time as it, like most of our meds, takes a long time to start working.
Hope that helps and that you feel better soon! -Tina
Just a quick note to the main author, I’ve been following all the replies and finding it really helpful and enjoyable to read and write on the topic, which is of such importance to all of us! So thank you very much for your “newbie” questions, and keep 'em coming! (glad there are already so many in stock!)
Ann~ I had no idea that low dose prednisone can cause so much trouble! I've been on 5mg a day for about a year. I take vitamin D everyday because it always seems to be low. I think I may drop the prednisone since I just started methotrexate with my plaquenil. We'll see what happens.
Ann A. said:
Prednisone, even at this dosage, will interfere with how your body metabolizes vitamin D and calcium. This will put you on the road to joint loss, chronic back pain, and other issues that complicate the lives of people with lupus. Since people with lupus tend to already have low levels of vitamin - which become lower as we deal with our photosensitivity - and our medications - the sooner a newbie can get a test of their baseline vitamin D levels and start to learn how they are impacted by medications and flares - the higher the overall quality of their life will be.
Good luck dealing with lupus and lupus medications.
You know....i often just suffered through flares without asking for any additional pills. Pred pills to me are to be only used in most severe cases due to negative side effects.
Now i did take daily pills that helped even in flares and to keep them at bay but mainly i found i need to rest more and so did that as much as could...while working.
Sorry....i just figured that this is part of disease and it was my body saying to rest. I do hope you feel better soon...but i often go months with constant flare, fevers etc...i rest and start to get better than go to work..and boom right back down again. it did get frustrating...i also think younger you are easier it is to handle it...got much worse as i have got older to handle them even not working...housework is almost impossible for me to do anymore. so i sympathize completely.
Hello, I have been on them for 2 soon 3years and take them daily. Try not to over due yourself everyday! And if there things that just got to be done that day pace your day and time with mini breaks. It really help to stop and rest for 30mins., take a time out moment and get a fresh breath of air(clear your mind )-this helps me !! And hope that it will help YOU also…good luck…Beverly L.
Ann~ Sorry, I didn't describe that very well. Both my rheumy and pcp have me taking Vitamin D supplements. I meant it was low several times before I started the Vitamin D. That dang lupus fog makes me write and say things I don't really mean. hahaha
Ann A. said:
Dear Artchick,
Why doesn't your doc have you taking enough vitamin D per day to keep it from being low? My old rheumy was so afraid of vitamin D that he kept all his patients on a dosage that would not stop them from being low. But my internist does not want my levels anywhere near low. So I take it daily also at a rate that keeps me closer to the high end of the expected range.
artchick said:
Ann~ I had no idea that low dose prednisone can cause so much trouble! I've been on 5mg a day for about a year. I take vitamin D everyday because it always seems to be low. I think I may drop the prednisone since I just started methotrexate with my plaquenil. We'll see what happens.
Ann A. said:
Prednisone, even at this dosage, will interfere with how your body metabolizes vitamin D and calcium. This will put you on the road to joint loss, chronic back pain, and other issues that complicate the lives of people with lupus. Since people with lupus tend to already have low levels of vitamin - which become lower as we deal with our photosensitivity - and our medications - the sooner a newbie can get a test of their baseline vitamin D levels and start to learn how they are impacted by medications and flares - the higher the overall quality of their life will be.
Good luck dealing with lupus and lupus medications.
Medrol is what I take when needed. Dosepacks are all wrong for a lot of people though. You have to taper off slowly - very slowly - or you just flare again. Any Dr worth their salt should know that.
Unfortunately .... prednisone does work. I hate the drug, becuase after the first couple days you begin to really feel anxious, or mood swings, and hungry as ever, I feel "bulky" like a big line backer. Like my muscles are holding protein or something. But it really does help get oyou out of the flare...and get you r body moving again like yuo would like.
2 weeks is not bad. At elast you are not staying on it for a long time.
My sister took this drug for years on years nd she has osteo ...and 2 hip surgerys. It can break own your calcium or bone. Not sure which one it was.
I rely on this now)prednisone) i have 2 mall kids and I work.... i have to make it through my days.. so it does help me. I only kick n scream when hey tell me I need more then 10 mg.
But beware, even if the side effects don’t bother you outright, they do take a long term toll (type 2 diabetes, for one example, neurotoxicity for another), and it’s really hard to come off of them!