I didn't know about only get three goes at the biologics. It is disgusting that they can mess around with peoples lives like that. I think I won't qualify as by imflammatory markers are not very high, despite pain that sounds pretty much identical to yours. Soooooooo frustrating. And painkillers don't cut the mustard.
Good luck with your plight xo
Yep - totally agree that we are all going to cost more than the biologics themselves on pensions if we have no success. And I currently pay more than double the cost of a biologic a year in tax! Maybe I’ll just keep taking the pred, though I can’t keep it under the ‘safe’ dose and feel normal.
I was with my daughter a few weeks ago when her rheumatologist really took the time to explain the medication process. They begin with prednazone - go to MTX and then to the biologics, when necessary. I think they try to see if the least intrusive (and least expensive) drug will find you relief from the pain and swelling. My daughter's pain and swelling is pretty severe. Her lower back is really bothersome and she is only on her initial doses of MTX. I know that it may take months for the MTX to alleviate her pain, so she will continue with some kind of pain reliever until then.
Friend!
I have been prescribed it on a tapered six week basis to bridge the gap between mtx working. It sorted my pain and swelling overnight and had no terrible side effects.
Friend…for the time being!
I had always wanted to stay away from prednisone but have had a flare up and after a good 40min session with my Dr decided that I had to do something about the intense, energy sapping pain I was experiencing. I’m on a four week cycle, starting at 15mg a day and slowly going down to 1.5mg by the last week. Yes, it has side effects (increased appetite, light headed, sleeplessness) but the pain has almost gone in just over a week.
My Rheumy is very good and explained that a short course of prednisone along with MTX injection can (and hopefully will) shorten and sometimes stop a flare up. He said that the alternative which is strong painkillers, can give some relief but doesn’t address the main issue which is the damage that PsA has on cartilage and joints.
hi all... For me the pred made me pain free, but i lost 12 pounds in 2 weeks.. I also had a weird mood, i really didnt have a care in the world..no interest in intimacy with my wife, or anything i care about. I hope my rheumy has other options....
It never worked for me! When I first started it, I felt fantastic. Full of energy, happy and productive. Then a few days later, tapering down, absolutely terrible :(
I can not take Prednisone, I have tried it twice, and get so Sick. 1st time I had to spend an hour in the Bathroom and Had projectial vommiting, again the 2nd time with even a lower dose.
Now time for me to update - I will never again take prednisone for more than 3 days unless it is life threatening (turns out I also have Crohn’s, so it may be at some point in the future).
I have seriously just gone to the pharmacy and put $1800 on the credit card to take a loading dose for Humira, (Crohn’s thing), because my only other option was steroids.
I am 37, and after 8 months of ‘low dose steroids’ for PsA, and they aren’t supposed to cause major problems, I am already on the brink of osteoporosis of the spine (yes, my spine is dissolving at 37).
Only use steroids in bursts. Ever. For me, if I had to make a choice, it would be foe. Now when I have a flare and feel lousy, I do yoga if I can and go to bed (but then I have a decent underlying biologic treatment - that would not have worked back when I was first diagnosed and my treatment was like using a water pistol on a bushfire, to paraphrase a long term member).
Have been on Prednisone most of the past year. Each time I try and wean off...when I get to 10 mg. I am unable to walk so my doctor increases again. Just recently, I became Prednisone induced hyperglycemic or steroid induced diabetic. Have gained much weight as well. Trying again to get off of it.
Kaka, I’m so sorry. I see you’ve already tried MTX, Humira and Enbrel - prednisone is truly horrible long term, but when you have no other option (than being able to not walk)…
I was lucky, the only reason I was on it so long was the Rheumy refusing to give me biologics (which subsequently worked once I got them), so I’m hoping to avoid it as much as I can now… But we’ll see, which was part of the reason I came back to the post after so long.
Steroids make me crazy. My old rheum had me on 20mg a day and gave Depomedrol infusions with Remicade. The daily prednisone was bad enough, I felt like there was something really mentally wrong with me to the point that I wanted to check myself into the hospital. Then when I would get the infusions, I got a huge burst of crazy energy. I would start many tasks and not finish them, had no appetite at all, and was so emotionally labile that I don’t know how my family tolerated me. I was also up for two nights with no sleep. When my face, chest and back broke out with acne, I stopped taking it. I couldn’t handle it any more, and that was the last straw for me. I will not take steroids any more unless they are needed to save my life.
Geez you made me laugh when you said running around like a manic squirrel.
I totally get that! Starting but not finishing tasks…good ole Prednisone.
Thanks for the burst of laughter! X
said:
I’m glad you asked this question, JenAus, because I just got my “official” PsA diagnosis on Monday, and my rheumatologist gave me a prescription for 30 mg. of prednisone for 1 week, then 20 mg. for one week, then 10 mg. for one week, then down to 5 mg. for infinity, I guess, since once I am down to 5 mg. a day, the prescription is for about another 100 10 mg tablets. I don’t understand this regimen, and her answer to my questions was pretty vague: “I want to make you happy for a while.” However, she wanted to see me again in 2 weeks, and gave me pamphlets both on prednisone and DMARDS, so I think DMARDS is where we are headed. If this regimen has an underlying theory that anyone knows, PLEASE tell me.
The pharmacy unfortunately gave me the wrong instructions on how to take the prednisone. I’m supposed to take the whole dose in the a.m., and they had me taking 10 mg. tablets at each meal. So the first day I was taking prednisone every few hours, and running around like a manic squirrel from task to task that I haven’t had the energy to undertake for a long while. I didn’t get any sleep, but my pain is at least 90% better. I’d gotten so used to hurting, I didn’t realize I could feel good. Wow! I didn’t realize how much the pain was dragging me around.
Day Two: I’m still taking prednisone at breakfast and lunch, but decided to skip dinner, as I was emotionally out of control, almost screaming at nice people like bank tellers (I’m normally a calm and polite person, or I like to think so!), screaming at my husband, weeping every few minutes, and feeling like I was losing my mind. Very confused.
Day Three: I talked to my doctor’s assistant who called back and said to stop the prednisone until she could talk the symptoms over with me next week.
Day Four: I called my doctor’s office (she of course does not work on Fridays) but talked to her assistant and told her I wanted to try it again and see if I did better. She told me to wait until I saw the doctor next week. I decided not to be a compliant patient, and thought about how much stress I was under this week, with the PsA diagnosis, uncertainty and fears about the future, nervous about taking prednisone, finding out that my best friend in town has been diagnosed with early-onset Alzheimer’s and having my beloved sister-in-law, who has stage IV breast cancer, tell us that she’s taken a new turn for the worse. I thought some of my crazy feeling might just be having more stress than I could handle. Also, I wanted the pain relief! So I took 20 mg. of prednisone this morning, and had planned ahead how I would use this new surplus of energy - working in the garden, scrubbing the floor, taking a walk with my husband - if I felt out of control. But I didn’t have the sense of craziness today, and tomorrow I am planning to take 30 mg. in the morning. I guess you’re supposed to taper down instead of up, but this is how it’s worked out.
Other than the sense of craziness, which may well have been general stress, I had some stomach pain the first day, and I have some appetite now. I haven’t had much appetite for a long time and have lost a lot of weight.
As far as I understand, prednisone not only helps relieve symptoms, but helps prevent damage - or further damage - to connective tissue. Because it took too darn long for me to get a diagnosis, I do have some damaged ligaments, and I’d like my joints to hold up for a while!
If the prednisone keeps working out for me, I think the “pain vacation” will be healthy. I can use some decent sleep and I don’t need the stress of pain.
Shel, I’m sorry drugs haven’t worked out well for you. Dibray, I think we are too much alike in preferring to work out our own medical situations! Shall I pretend to my rheumatologist next week that I stopped the prednisone or be honest with her? It’s my body, and while she has a tremendous amount of knowledge that I don’t, I have suffered through so many medical mistakes that I think I’d rather take my chances with my own judgment on kind of minor things. If it was okay to take 30 mg. of prednisone Tuesday, and I’m doing okay with it now, I think it’s probably okay to take 30 mg. tomorrow.
JenAus, I hope you feel as well as you possibly can and have no more bad headaches.
If anyone can explain why Jen and I are having prednisone as our initial treatment, and/or what to expect afterward, I’d be really grateful. Why start out with it and what is it supposed to do for us?
Take care, everyone.
I am AMAZED your rheumy gave you prednisone. I begged my internist and my rheumy for "just a little" prednisone, because I remember how good it made me feel a couple different times. They refused to give me even just a small dose. They said it's too dangerous and my rheumy said nobody is treated for PsA with prednisone! The dermatologist I'm seeing tomorrow is willing to give me some prednisone. What I'm wondering, though, is prednisone a trigger for worsening disease? IDK how similar the cortizone injections into psoriasis patches are to taking oral prednisone, but I do think that the cortizone injections, although they cleared my psoriasis up temporarily, ultimately caused my psoriasis to come back 10-fold! So, if prednisone is anything like the cortizone injections, I'm having doubts about taking it again.
<required> said:
I'm glad you asked this question, JenAus, because I just got my "official" PsA diagnosis on Monday, and my rheumatologist gave me a prescription for 30 mg. of prednisone for 1 week, then 20 mg. for one week, then 10 mg. for one week, then down to 5 mg. for infinity, I guess, since once I am down to 5 mg. a day, the prescription is for about another 100 10 mg tablets. I don't understand this regimen, and her answer to my questions was pretty vague: "I want to make you happy for a while." However, she wanted to see me again in 2 weeks, and gave me pamphlets both on prednisone and DMARDS, so I think DMARDS is where we are headed. If this regimen has an underlying theory that anyone knows, PLEASE tell me.
The pharmacy unfortunately gave me the wrong instructions on how to take the prednisone. I'm supposed to take the whole dose in the a.m., and they had me taking 10 mg. tablets at each meal. So the first day I was taking prednisone every few hours, and running around like a manic squirrel from task to task that I haven't had the energy to undertake for a long while. I didn't get any sleep, but my pain is at least 90% better. I'd gotten so used to hurting, I didn't realize I could feel good. Wow! I didn't realize how much the pain was dragging me around.
Day Two: I'm still taking prednisone at breakfast and lunch, but decided to skip dinner, as I was emotionally out of control, almost screaming at nice people like bank tellers (I'm normally a calm and polite person, or I like to think so!), screaming at my husband, weeping every few minutes, and feeling like I was losing my mind. Very confused.
Day Three: I talked to my doctor's assistant who called back and said to stop the prednisone until she could talk the symptoms over with me next week.
Day Four: I called my doctor's office (she of course does not work on Fridays) but talked to her assistant and told her I wanted to try it again and see if I did better. She told me to wait until I saw the doctor next week. I decided not to be a compliant patient, and thought about how much stress I was under this week, with the PsA diagnosis, uncertainty and fears about the future, nervous about taking prednisone, finding out that my best friend in town has been diagnosed with early-onset Alzheimer's and having my beloved sister-in-law, who has stage IV breast cancer, tell us that she's taken a new turn for the worse. I thought some of my crazy feeling might just be having more stress than I could handle. Also, I wanted the pain relief! So I took 20 mg. of prednisone this morning, and had planned ahead how I would use this new surplus of energy - working in the garden, scrubbing the floor, taking a walk with my husband - if I felt out of control. But I didn't have the sense of craziness today, and tomorrow I am planning to take 30 mg. in the morning. I guess you're supposed to taper down instead of up, but this is how it's worked out.
Other than the sense of craziness, which may well have been general stress, I had some stomach pain the first day, and I have some appetite now. I haven't had much appetite for a long time and have lost a lot of weight.
As far as I understand, prednisone not only helps relieve symptoms, but helps prevent damage - or further damage - to connective tissue. Because it took too darn long for me to get a diagnosis, I do have some damaged ligaments, and I'd like my joints to hold up for a while!
If the prednisone keeps working out for me, I think the "pain vacation" will be healthy. I can use some decent sleep and I don't need the stress of pain.
Shel, I'm sorry drugs haven't worked out well for you. Dibray, I think we are too much alike in preferring to work out our own medical situations! Shall I pretend to my rheumatologist next week that I stopped the prednisone or be honest with her? It's my body, and while she has a tremendous amount of knowledge that I don't, I have suffered through so many medical mistakes that I think I'd rather take my chances with my own judgment on kind of minor things. If it was okay to take 30 mg. of prednisone Tuesday, and I'm doing okay with it now, I think it's probably okay to take 30 mg. tomorrow.
JenAus, I hope you feel as well as you possibly can and have no more bad headaches.
If anyone can explain why Jen and I are having prednisone as our initial treatment, and/or what to expect afterward, I'd be really grateful. Why start out with it and what is it supposed to do for us?
Take care, everyone.
Grandma J, I’m sure others will pipe up as I have no personal experience of psoriasis and prednisone, but many on this forum and others talk about rebound flares of psoriasis on stopping it - much as you described - 10 fold worse.
How dangerous it is depends on your individual situation - you should certainly think twice about it if your Rheumy refuses to give it to you, but then my Rheumy did that with biologics initially and they’ve been very good to me. So make sure you talk to your derm about the risks, ask specifically about the possibility of rebound flares, and make an informed decision 
Unless you already have psoriasis in form postulate or worse, I'd avoid steroids as much as possible. Steroids can trigger more dangerous forms of psoriasis. Not mentioned you risk diabetes, yeast, and other issues. Not everyone has rebound flares, but honestly it not worth it. I'm trying to scare into not taking it, just be careful.
I should point out I’ve been pretty gentle in that last comment, but if you read some of my earlier posts you’ll see that I’ve had plenty of experience with prednisone and as a result of my experiences avoid it like the plague. I don’t personally believe it should be used to treat PsA except as a very short term (I mean 2 days) medium dose pain holiday.
Long term prednisone, and weaning off it, were truly awful.
Thanks, Jen, I appreciate your insight and I'll tell her I only want enough Prednisone for the short-term flares, if any at all....at least if I have the prescription for it I can get it filled and use it only if I'm desperate!
Jen said:
Grandma J, I'm sure others will pipe up as I have no personal experience of psoriasis and prednisone, but many on this forum and others talk about rebound flares of psoriasis on stopping it - much as you described - 10 fold worse.
How dangerous it is depends on your individual situation - you should certainly think twice about it if your Rheumy refuses to give it to you, but then my Rheumy did that with biologics initially and they've been very good to me. So make sure you talk to your derm about the risks, ask specifically about the possibility of rebound flares, and make an informed decision :)
Mataribot, I appreciate your comments. I don't have postulate or worse--and I sure don't want to trigger it to get worse! I'm taking all the feedback in from you guys so I can make an informed decision. Thank you so much!
mataribot said:
Unless you already have psoriasis in form postulate or worse, I'd avoid steroids as much as possible. Steroids can trigger more dangerous forms of psoriasis. Not mentioned you risk diabetes, yeast, and other issues. Not everyone has rebound flares, but honestly it not worth it. I'm trying to scare into not taking it, just be careful.
Oral prednisone WILL cause rebound flares of psoriasis. Creams and injections as most dermies know will eventually be ineffective.
All that being said the "latest" is using a 12 day taper of prenisone measuring "response" 3 days at 20. 3 days at 15 and so on. This is strictly for diagnostics determining where to to start in 3 step medication process. If one responds under 10 they start with NSAIDS then they add the next step until it works. They MAY use 5 mg predi as opposed to pain medication along with the step medication. The days of using prednisone as a flare medication are long gone except if someone is in a regular treatment regime. (ie regular NSAID, DMARD, or Biologics) You actually have a better chance of getting opiates (and these days that is between slim and none, and slim is moving on.) There are a very few pain management specialists using it.