I’ve just started getting treatment, and have had some exposure to the miracles prednisone can work (for me at least). The list of side effects is pretty long and horrid though - can anyone relate how their Rheumy prescribes it, how well it works, and if you have seen any major side effects, particularly at low doses?
I had a week on 15mg (great - no stiffness and almost pain free), a week on 10mg, very good, but with some shocker headaches, and a week on 5mg, definitely damps pain and stiffness, but it’s still there and I seem to be slowly going backwards on the 5mg dose (ie I’m worse now than 3 days ago).
Hi JenAus
I was initially on prednisone at 25mg twice a day!! It took me along time to reduce and wean down but when you get to 10mg then you should just be weaning at 1mg every 2 weeks to prevent a rapid increase in inflammation. Dont be afraid of putting yourself up again and restarting weaning but at a slower pace. I dont ring my GP or Rheumy I just do it and then inform him at my next appt , as I feel Im the one in pain and this is how I need to do it ! But he was very supportive and I think he was relieved that I didnt ring him everytime I wanted to change my meds lol. I go on and off my prednisone if my flares are really bad , but once im on it I take 6-8 weeks to wean off it depending on how much I needed to go up to , to relieve my pain. The headache is due to reducing too fast , my biggest side effect is fluid retention and that quickly disappears once I stop it .I hope this helps :-)
When I was on prednisone (about 6 years ago) I was on it for several months, and don't remember how much I took, but looking back at the pictures, I was still avoiding putting weight on my right foot and had developed "moon face" really bad. It went away though. I do remember the pain pretty much coming back as soon as I had weaned off the prednisone (and started sulfazulazine which did nothing at all)
It didn't work for me at all, and I am grateful. It causes adrenal supression and abrupt cessation can be very dangerous. I guess all the meds for this are horrid in one or more ways or another, so it is about weighing up the pros and cons. My rheumatologist wouldn't prescribe it for me other than as a short term reliever to get me through till the other drugs starting working, which they didn't anyway. I hope you find relief soon.
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.
Personally, I hated prednisone and I have no plans to take it ever again, if possible. I was on it for several months and ultimately the side effects outweighed the benefits. I gained a lot of weight, started getting the "moon face," grew hair in places I didn't want it, and lost hair on my head. Worst of all, for me, was the mood swings. I would feel so angry for no reason at all. I was like a volcano ready to explode at any moment. Other times, I would become so emotional that I would just cry and cry. Looking back, I feel really bad for my husband who had to put up with it all. I was an emotional trainwreck! On top of it all, I wasn't in good shape with my PsA. Ultimately, I elected to wean off of it. Even though I came off slowly, I still feel as though I experienced withdrawal. Everything got a lot worse all of a sudden. I know that others have been successful with prednisone, but this was my experience. I vote foe!
Friend and foe both. 60 mg for two months. Stopped my terrible joint pain outright, which sort of saved me
But it’s an emotional roller coaster that almost outweighs the lack of pain. Highs, lows, crabbiness, crazy. I’m tapering now and it’s worse.
So - my advice - work with your doc to get on a long term med ASAP instead. Short term - Only you can decide if the pain would be worse to you than the emotional stuff caused by the pred.
Ps - I take it in 3 doses, 9am, 11:30, 3pm (far from bedtime)
Thanks for information about your experiences. I started over at 30 mg. this morning and my mood is okay and I'm not agitated. My knees still hurt!
RB - Did you mean that the emotional symptoms or the pain gets worse for you while tapering?
Thanks.
Tapering really is making my moods crazier. Never felt so angry!!
I’ve also had flares of the pain, but at most for a night (compared to a week of bad mood). I know it’ll all settle out but it’s hard to keep it in mind with the crazy brain.
Gardener said:
Thanks for information about your experiences. I started over at 30 mg. this morning and my mood is okay and I’m not agitated. My knees still hurt!
RB - Did you mean that the emotional symptoms or the pain gets worse for you while tapering?Thanks.
Hi everyone,
Thanks so much for all your comments, others experiences make a huge difference. It is particularly useful to be able to understand what’s attributable to the prednisone and what to the PsA. I definitely had a short fuse while taking 15mg, though it was pretty short with the PsA pain anyway. Headaches - withdrawal - I’d suspected that one, so thanks for the confirmation.
I’ve already started MTX, so I think the prednisone was mostly designed as a bridge to the MTX. I’ve also seen some research that suggests that early in the disease it can be quite an effective as well. Unfortunately 5mg of prednisone doesn’t do much for me, and I’m not seeing anything yet with my 3rd 10mg MTX dose, so my bridge has a pretty unpleasant hole in the middle. Added another 5mg of prednisone at 2 yesterday so I could get out of bed again (I got up early and went to a child’s party in the morning but sat like a lump on the couch the whole time and then went back to bed), and still had to have a codeine to sleep last night. Seeing Rheumy tomorrow, and no MTX side effects so far, so maybe I’ll suggest we double the MTX.
For those of you who put on weight, how long does it take before it shows up? I’ve been careful and only on low doses, so no dramas so far, but I’m a bit worried it will be one of those delayed things that sneaks up on you a couple of months after you start taking the prednisone.
My doctor wanted me to take this…he offered it both times I have gone. He said he thinks I probably don’t even realize how much pain I’m actually in…and said it would be a good way of showing me the extent the disease was at. And then I could relay that back to him and go from there. I’m not a medicine person. I haven’t been on an antibiotic in 7+ years. Have never had a flu shot…etc. I only take motrin when my head is pounding. That’s it. I do have pain but I would rather just deal with it. I am a stay at home mom. I have a 6 and almost 3 year old. So I try and rest in between cleaning, playing with kids. I have an extremely supportive hubby. So at the moment I’ve chosen no meds what so ever. But I will say…the other day. I had a headache. So I took four motrin. Completely forgot about it. I was cleaning and I felt great. I literally thought in my head-wow what’s going on-i am not really having any pain and felt relatively well. Then I remembered the meds I had taken. Sad. Lol. Wish I could take it all the time. I realize at some point this might change for me. But at the moment this was my choice. And its going ok so far. And steroids-scare me so much. There’s so many side effects. Just my opinion. Good luck! 
Karyn
Hi Gardener, please be careful and wean off slowly. I think sometimes Drs and patients can be complacent about these medications because they use them every day. This is the case for my Dr. He hasn't been ordering the routine bloods to monitor for bone marrow supression that can happen on methotrexate. I have been organising that myself and monitoring my own levels. I used to read everything I could on every drug I took. This started to depress and scare me so I have stopped but every so often I look stuff up. I did a pharmacology subject last year and I have access to MIMS through work. Maybe a blessing, maybe a curse. But please be careful with abrupt withdrawl from corticosteroids <3
Gardener 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.
RB, thank you. I think I know what you mean about the anger, and that's not something I want to direct at people who haven't done anything to deserve it. And I don't want to just feel angry about having this goofy disease and take it out on the people around me. I'll have to figure out a way to deal with the anger.
Thanks for giving me the ratio of pain/bad mood.
I'm so sorry about the crazy brain. You obviously have a clear and intelligent mind, so I'm think that crazy brain might feel especially alien and unpleasant to you. Please take very good care of yourself. Thanks again
RB said:
Tapering really is making my moods crazier. Never felt so angry!!
I've also had flares of the pain, but at most for a night (compared to a week of bad mood). I know it'll all settle out but it's hard to keep it in mind with the crazy brain.
Gardener said:Thanks for information about your experiences. I started over at 30 mg. this morning and my mood is okay and I'm not agitated. My knees still hurt!
RB - Did you mean that the emotional symptoms or the pain gets worse for you while tapering?Thanks.
Thank you for your concern, Shel. Now that I'm actually ON the medication, I can start to think about that and talk with my doctor about the weaning she seems to plan. I checked out when prednisone tablets reach peak plasma levels and what their half life is, and I think I understand why the error with the pharmacy caused me to feel so nutty. Probably better not to munch these like almonds every few hours! Taking the whole dose this morning, as my doctor intended, has allowed me to have a functional day and I feel positive about tomorrow!
I know what you mean about the perils of reading too much about the side effects. Thank you for your well-expressed concern about that. I think I'm pretty okay with that. When I took Abnormal Psych classes in grad school, my classmates would all come down with whatever mental illness we were reading about at the time. I didn't experience that, but it was interesting to see my friends convinced that they were bi-polar for two weeks and then schizophrenic for two weeks and then depressed for two weeks, when they were perfectly normal. I think if we'd covered post-partum depression, the males would have come down with that, too! It kindled an interest in placebo effects.
I guess I've always just felt it was the responsible thing to do to be aware of potential side effects, pleasant or unpleasant. I found a British web site on prednisone, and while it acknowledged the definite possibility of side effects, it also described prednisone as giving people "a sense of well-being." I liked that - a lot better than phrases like "euphoria" or "unreasonably good mood" that I've read elsewhere, that sound unhealthy. I think I'm experiencing a sense of well-being tonight. More acceptance of having PsA as a definite new reality. Thinking of ways to help my friend with early Alzheimer's and her husband instead of just getting in a funk over it.
Shel said:
Hi Gardener, please be careful and wean off slowly. I think sometimes Drs and patients can be complacent about these medications because they use them every day. This is the case for my Dr. He hasn't been ordering the routine bloods to monitor for bone marrow supression that can happen on methotrexate. I have been organising that myself and monitoring my own levels. I used to read everything I could on every drug I took. This started to depress and scare me so I have stopped but every so often I look stuff up. I did a pharmacology subject last year and I have access to MIMS through work. Maybe a blessing, maybe a curse. But please be careful with abrupt withdrawl from corticosteroids <3
Gardener 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.
Shel, I think I accidentally put my response to you in some wrong place. Sorry! I cannot blame this on prednisone, as I am just a klutz when it comes to computer stuff.
And apologies to everyone for the repetition. I need one of the ten-year-olds in the neighborhood to come over and give me some computer tutoring.
Shel, thanks for caring.
Gardener said:
Thank you for your concern, Shel. Now that I'm actually ON the medication, I can start to think about that and talk with my doctor about the weaning she seems to plan. I checked out when prednisone tablets reach peak plasma levels and what their half life is, and I think I understand why the error with the pharmacy caused me to feel so nutty. Probably better not to munch these like almonds every few hours! Taking the whole dose this morning, as my doctor intended, has allowed me to have a functional day and I feel positive about tomorrow!
I know what you mean about the perils of reading too much about the side effects. Thank you for your well-expressed concern about that. I think I'm pretty okay with that. When I took Abnormal Psych classes in grad school, my classmates would all come down with whatever mental illness we were reading about at the time. I didn't experience that, but it was interesting to see my friends convinced that they were bi-polar for two weeks and then schizophrenic for two weeks and then depressed for two weeks, when they were perfectly normal. I think if we'd covered post-partum depression, the males would have come down with that, too! It kindled an interest in placebo effects.
I guess I've always just felt it was the responsible thing to do to be aware of potential side effects, pleasant or unpleasant. I found a British web site on prednisone, and while it acknowledged the definite possibility of side effects, it also described prednisone as giving people "a sense of well-being." I liked that - a lot better than phrases like "euphoria" or "unreasonably good mood" that I've read elsewhere, that sound unhealthy. I think I'm experiencing a sense of well-being tonight. More acceptance of having PsA as a definite new reality. Thinking of ways to help my friend with early Alzheimer's and her husband instead of just getting in a funk over it.
Shel said:Hi Gardener, please be careful and wean off slowly. I think sometimes Drs and patients can be complacent about these medications because they use them every day. This is the case for my Dr. He hasn't been ordering the routine bloods to monitor for bone marrow supression that can happen on methotrexate. I have been organising that myself and monitoring my own levels. I used to read everything I could on every drug I took. This started to depress and scare me so I have stopped but every so often I look stuff up. I did a pharmacology subject last year and I have access to MIMS through work. Maybe a blessing, maybe a curse. But please be careful with abrupt withdrawl from corticosteroids <3
Gardener 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.
Thanks for asking the original question, Jen. The responses have been very helpful to me and so have the comments you just made about prednisone and MTX.
JenAus said:
Hi everyone,
Thanks so much for all your comments, others experiences make a huge difference. It is particularly useful to be able to understand what's attributable to the prednisone and what to the PsA. I definitely had a short fuse while taking 15mg, though it was pretty short with the PsA pain anyway. Headaches - withdrawal - I'd suspected that one, so thanks for the confirmation.
I've already started MTX, so I think the prednisone was mostly designed as a bridge to the MTX. I've also seen some research that suggests that early in the disease it can be quite an effective as well. Unfortunately 5mg of prednisone doesn't do much for me, and I'm not seeing anything yet with my 3rd 10mg MTX dose, so my bridge has a pretty unpleasant hole in the middle. Added another 5mg of prednisone at 2 yesterday so I could get out of bed again (I got up early and went to a child's party in the morning but sat like a lump on the couch the whole time and then went back to bed), and still had to have a codeine to sleep last night. Seeing Rheumy tomorrow, and no MTX side effects so far, so maybe I'll suggest we double the MTX.
For those of you who put on weight, how long does it take before it shows up? I've been careful and only on low doses, so no dramas so far, but I'm a bit worried it will be one of those delayed things that sneaks up on you a couple of months after you start taking the prednisone.
I have been on as much as 60 mg of prednisone daily for another autoimmune disease (now in remission from that) and I can tell you that if you are experiencing setbacks at the lower dose, you are not on enough to manage your flare. If the flare is still quietly raging, you are still in what I call self-destruct mode. The immune system is still attacking. You need to get this under control so that more damage to your joints and organs is not going on. I had an auto immune disease called Polyarteritis Nodosa (PAN) that attacted the arteries in my legs. When I had a flare going on my arteries as well as the nerves were breaking down. The longer the flare went on, the more permanent damage was done. It's really crucial for you to get with your doctor and make sure your flares are under control.
Kary, I think that what you said may be what my doctor meant when she said she "wanted to make me happy" - that she wanted me to realize how much pain I have been in, as well as relieve it for a while and give me a break.
6 and 3 are such adorable ages. Lots of work, but they are so sweet. I'm glad your husband is supportive and helps out.
Do you feel like this discussion of steroids has made you feel more or less scared about them?
karynailes1984 said:
My doctor wanted me to take this...he offered it both times I have gone. He said he thinks I probably don't even realize how much pain I'm actually in...and said it would be a good way of showing me the extent the disease was at. And then I could relay that back to him and go from there. I'm not a medicine person. I haven't been on an antibiotic in 7+ years. Have never had a flu shot...etc. I only take motrin when my head is pounding. That's it. I do have pain but I would rather just deal with it. I am a stay at home mom. I have a 6 and almost 3 year old. So I try and rest in between cleaning, playing with kids. I have an extremely supportive hubby. So at the moment I've chosen no meds what so ever. But I will say...the other day. I had a headache. So I took four motrin. Completely forgot about it. I was cleaning and I felt great. I literally thought in my head-wow what's going on-i am not really having any pain and felt relatively well. Then I remembered the meds I had taken. Sad. Lol. Wish I could take it all the time. I realize at some point this might change for me. But at the moment this was my choice. And its going ok so far. And steroids-scare me so much. There's so many side effects. Just my opinion. Good luck! :)
Karyn
Lol. Probably more scared. I guess I feel like if the question has to be asked then… its scary. Haha. I know that’s silly. The past few days…like twice I have kind of just wanted to cry/whine- “why does it have to be like this”. Because I do hurt. But I guess in my mind for me I just can’t justify it. And don’t get me wrong. If I were giving out advice to someone else. I would prob say well why not try it and see. But like I said I’m just not at that point yet.
Wow, thanks, Reid. This is really something I want to ask my doctor about.
I hope your PAN stays in remission forever.
Reid said:
I have been on as much as 60 mg of prednisone daily for another autoimmune disease (now in remission from that) and I can tell you that if you are experiencing setbacks at the lower dose, you are not on enough to manage your flare. If the flare is still quietly raging, you are still in what I call self-destruct mode. The immune system is still attacking. You need to get this under control so that more damage to your joints and organs is not going on. I had an auto immune disease called Polyarteritis Nodosa (PAN) that attacted the arteries in my legs. When I had a flare going on my arteries as well as the nerves were breaking down. The longer the flare went on, the more permanent damage was done. It's really crucial for you to get with your doctor and make sure your flares are under control.