Recommendations on how to get off of steroids

[Ores19000]

Hello everyone, I am going to start directly with the problem. I have been using 15 of Prednisolone for the Polymyalgia Rheumatica condition for nearly one year now, however for the period of the last 3 months now I have been weaned myself down taking 2.5 mg of it per day. now what’s the thing… exactly 5 days ago I have totally stopped from using them and the problem appeared yesterday when my joint pain has started to return with a vengeance… I really do not like this thing… so far it is not as bad as it has been used to be in the past before I have started to take them, however it is currently going into that way and I can feel that it does because it gets worse and worse and I am now afraid that I am going to reach back the point when I am not able to get up from the toilet… If I would ever reach this point again I would know that I am going to be exactly where I have started with it.

 

Currently, my rheumatologist has told me that it may take a little while for my body to (finally, maybe one day) start making of its own that chemical that the steroids have been giving me and supplementing my body with. this is the only thought that keeps me away from taking them again and from making me think that it was all useless and that’s why I really hope that I am going to see an improvement anytime soon. I need to tell you that I am really determined to finally get off of them in case it is going to be possible, however I think that it may be the fact that I need to be on a very small amount for some other period of time, for a long period of time… I mean, this is just what came into my mind and nothing more. But anyway it is still based on what I have read on what I have heard…

 

I mean… I have heard of some people being on them for their entire life? is this true or only rumors? I am now trying to weight up what it is worse in my life… to continue using steroids more (and possibly for my entire life) or to live a restricted life… a life in pains. So that’s basically why I am here. I want to get a little bit of your help, a little bit of your knowledge and experience. somebody ever got off steroids? Did your body got used to it and then started to make the substance needed by its own? Or it has been required to take steroids for your entire life? is there somebody who have had some withdrawals by stopping taking this drug? generally, I would appreciate any experience regarding this drug… anything can be helpful, so please… I will be waiting for you responses. Best regards!

 

[Summy]

Hi there Ores19000, yes, I do use steroids. I have been using Prednisone (which is very similar to Prednisolone) for so many years that I have lost count now… but yeah, what you have heard is true… indeed, there are a lot of people who are on it for their entire life and this is no secret and you might expect to be on it for life as well… I do know that it saddening because this is where it seems that I am now going to as well.

 

Generally, I can tell you that this is only a love or hate relationship with this drug, everybody who is taking them can approve. This is a really miracle drug that works extremely well for a lot of conditions out there and many people were literally saved by this drug, however there is always a trade off and especially with the long term and high dose use of this. unfortunately.

 

The dosage that you have said that you are on is, actually, pretty low and this is very good, however it is clearly an enough and effective dosage for your condition which is amazing if you ask me. when I am tapering off of them, from 80 mg to 90 mg a day, I am stopping at 20 mg. this is how accustomed my system and body are to this specific medication (unfortunately). This being said, it seems to me that you are under the wrong influence that this drug cures something permanently… no, unfortunately it doesn’t cure anything permanently and in case your doctor told you this (or made you hope about it) then you should have a serious talk with him. this drug only reduced inflammation or… whatever other the symptom or the chronic disease is that you are experiencing (or why you are using the drug for).

 

The side effects are affecting everybody differently and every individual in individual ways… I mean, there’s no 2 person with the exact same things. at least something but it is different. But anyway, the only withdrawal that you should be experiencing it is the initial symptom that’s returning that you are treating, which you are currently experience, again, unfortunately. But the withdrawals are not the same as something when you are taking something addictive. This is why, this stuff is not going to make you feel the usual withdrawal symptoms which are having sleeping issues, feeling jittery, vomiting, increased or decreased appetite in the time that you are tapering (which means taking less of the drug) or suddenly stopping it altogether.

 

I can guess that the question for you to answer is, do you really have some adverse or annoying side effects in the time that you are using Prednisolone? In case you do not, then I think that most likely it is the best thing for you to continue using it and simply enjoying life, living with this medication alongside. A recommendation… you could use this time now, when you are feeling relatively good (or better), to start researching some alternative treatment methods that you would be ready to try out. there are other things that can help you out. but if you already tried all of them and nothing else worked or in case you simply do not want anything else then yeah… you are right again, you have to choose, living a painful life or living with a medication… I would choose the second option but everybody does whatever wants.

 

I wish all the best to you. I do know that it is a hard decision to start taking any drug lifetime and it is even harder realizing that it is for lifetime… hope you’ll get through it!

 

[Ores19000]

Hello Summy and thank you very much for taking your time replying, indeed it has been very helpful which I am so thankful to you! first off, indeed you are correct on the fact that my dose it is very low dose if compared to the dosage that you are taking.

 

I need to say that I have picked up Lyme Disease somewhere in the US a few years ago (not sure exact timing) but the problem is that by the time that it has been diagnosed it had already become quite an issue for me. Then later, about 2 months of using antibiotics finally seemed to cure it, however then I suddenly have developed Polymyalgia Rheymatica, I really don’t know if there is a cause and an effect between these 2 ailments I am talking about, however the symptoms are really similar between them so I think that there should be.  I also need to mention here that I am already suffering from a quite bad case of osteoarthritis as well, however there has been a very sudden (seemed out of nowhere) onslaught of an extreme back, shoulder and knee pain as well. I mean, it has been an really onslaught because it has gotten so bad that I simply was not able to get up the stairs, or to get up from a chair or whatever and there is no need to say that I could not walk more than a couple of yards (which were painful as well). since it was so bad my rheumatologist had little time to think about what to give me and so he prescribed me 15 mg of Prednisolone pretty fast and in about 3 days of so I have been nearly fully recovered!

 

Either way… here I am now here, desperate and not sure what to do… I am now nearly 2 weeks with coming down from half a 5 mg tablet, no nil.. and my shoulder, back, neck and knee pain are almost fully back, they are almost exactly as what they were at their worse and this scares me. it is obviously that I told about this a doctor and I am going to visit my GP in a few days and I really hope a lot that he is going to tell me that I need to give my body a chance… that I should do it… and that there are chances that it is going to compensate for the stop of taking those tablets. I guess you understand me so I that’s why I guess that you do know how hard I wish that I would hear this.

 

However, if this won’t be the case then I guess that I am going to have to continue or recommence either 5 mg or half, but after I have read your post I have realized that it is by far not such a huge dose that I have been thinking that it is (which is why I am very thankful to you) and you know… when you feel that you don’t take so much medications then it doesn’t seem to be so scary anymore… but even so, it is obvious that I would rather not use any more tablets at all unless I really need to take any. It is obvious that I would take them if I have to choose between taking them and living a painful life. but if there is the slightest chance that I can cure it and I can feel fine without taking any medications anymore then it is obvious that I would try it out!

 

Anyway, thank you again, I am going to return here back in a few days after I am going to visit my GP and I am going to have a result from him. I will update on what he told me. but also, I have one last question here… in your personal experience… what are the long term negatives of using steroids (especially in large doses?) I would really like to know. and by the way, I am using Vitamin D supplements as well as some other supplements either in order to try avoid any bone density problems that could occur. Best regards!

 

[Suffes]

Hello Ores19000, regarding your last question…. You should know that the long term use of corticosteroids could lean a person to a lot… and I mean a lot of health problems. to start off with some of the most serious ones then I can tell you that those health issues are Cushing’s Syndrome (google if you don’t know what’s it), blood sugar level changes, increased blood pressure, weight gain as well as fluid retention, an increased vulnerability to a big variety of bacterial as well as fungal infections because of the corticosteroid’s ability to suppress the immune system response and unfortunately, this is not the entire list as it can go on with many others…

 

No doubts, as it has been said above by someone else, they can be miracle drugs in the short term and for a lot of people with different conditions, and they can be very and very good when taken long term as well, however, usually… where the risk to benefit ratio has been closely calculated! Having this said, in the end… a person need to weigh the impact of any of the negative long term use against the benefits of living a pain free and normal life. this depends on how much the drug is working for you and on how bad it affects you. what are the effects when you got off it and so on and so forth. Calculating this ratio would give you an exact response whether is it worth to take the drug or it is not. in case you are simply not able to enjoy your daily life and this is really impacting you very much and your ability to even get up in the morning and to do stuff, to do what you really need to do (and generally to function on a normal basis) then I honestly think that a very serious conversation is in order with your GP or Rheumatologist doctor. I do know that this is not a pleased situation but you know… this happens… you also should know that there may be non steroidal anti inflammatory drugs which may very well offer a nice middle ground compromise. Besides, you could also need to discuss the intermittent steroid dosing with your physicians as well as it might be a good idea. I only tell you what IMO would be good things to discuss with your doctor.

 

And yeah… I say all of that because I would tell you that you need to exhaust all other options firstly, before doing anything…. That’s because if all is said and done then you won’t change anything, you won’t be able to change the way you need. And if it does happen then the threat of possible long term side effects must take their correct place in such an important decision – in the back seat.

 

Either way, you need to know that I am no doctor, I only want to help you with what I know, with options and recommendations. Ultimately, listen and do whatever your doctor tells to!

 

[Summy]

Hi there Ores19000 once again, I need to say that I am truly sorry that you have contracted Lyme disease and that you are suffering with Polymyalgia Rheumatic and OA… it truly seems that you are having a tough time.. and I think so because both of them cause one to feel deep tissue and joint pain as well and this is making engaging in activities of daily living very and very difficult so you must try hard going throughout life… I do know that at the best this happens only some days… but if it’s at its worst then… I send all my prayers to you!

 

I really do hope very much that your rheumatologist is going to help you, is going to accept working with you until the end, until both of you are going to find a treatment that is going to be both effective and is going to give you the smallest amount and severity of long term or short term (whatever) side effects for you. and yeah, you are definitely right that I do understand you… and I do perfectly understand you when you want to say that you are not willing to use any other medication and especially long term… especially life time and that you would do it only in case there is a real need for doing it.

 

And yeah, sadly but Suffes is right when telling that… when saying that the long term use of corticosteroids can have a lot of side effects. and yeah, I am currently on a much much higher dose than you are all “thanks” to my illness that requires this very big amount in order to keep it under control. The dosage that your body needs does not reflect that amount of pain and discomfort that you are feeling. Trust me I do know and I do understand that you pain is real and that it is disrupting your life, daily life.

 

So well, I could cite some articles…. That’s in case it is going to help to ease at least a little bit your mind, they are about the long term low dose usage of Prednisone (Prednisolone) or I think that it would be the best if you would talk about this along with your personal history, first hand with your doctors.

 

A low dosage it is what has been required to keep under control your illness. One thing here is that even though the amount of the time that you have been treating it with this medication Prednisolone, along with having OA, even though this may be what it is usual and it is recommended, you and remember that your special, amazing, unique and simply wonderful self, may simply need a longer period time of treatment in case the symptoms that you have got, that have appeared as you have tapered off from it. this might be an idea as I would say that this need to be discussed with your doctors when you would see them.

 

I need to say that I do know a person who have had Lyme and she was not diagnosed it for some years! she also have had some similar kind of pains and she has been treated for a couple of years with only some traditional medicine that were obviously not working, and it is because of the very delayed diagnosis that she got. Then later, she has finally found CAM/ complementary alternative medicine but she did not stopped the traditional medicine and using them together they did worked very well and she is well today too! that’s amazing and I think that this can be achieved by everybody!

 

I need to tell you that in fact, there are a lot of people suffering from OA, RA, Polymyalgia Rheumatica as well as other chronic inflammatory conditions that they find the NSAIDS not to be very effective for their conditions. There are some who do experience relief from using them, however by far not all of them. it obviously depends on the level of the disease and the level of pain that you are experiencing.

 

And yeah, lately, it is obvious that you, by all means, should be exercising as much as you can and take supplements as well. you should do them both as often as your body is able to take. The more the better.  doing it, it is going to reduce the inflammation quite well which what you need and generally doing this is very good for you as well. I really hope that this is going to help you a bit. now looking forwards into hearing how your appointment went for you and what the doctor said. that’s the most important part. I wish you all the best and I really hope that you would be fine!

 

[Monique]

Hello there OP, I can tell you that I honestly think that the advice that has been shared with you told by Suffes is really a spot on and you really should listen to him as it might help you tremendously! So well, right now I am a treating patient that has been for a very long term on the corticosteroids and that’s how I know quite a lot about them. well… and if you ask me if it did has helped to reduce the pain and inflammation for me as a patient then I can tell you that in the short term it definitely helped and reduced it. but you know… the thing is that currently this patient is having compression fractures at t4 and t5 and as if this is not enough… as well as the rib cage too and as I’ve said, unfortunately, that patient is me

 

But yeah.. there’s also one more nasty side effects of the wonderful corticosteroids that it is including improper absorption of the calcium as well as vitamin D and if this does happen for a while then this can lead the patient to have problems with bone loss and osteoporosis as well. I saw that this has been mentioned in the past by someone saying that he/she takes some supplements of vitamin D. but sometimes it might not be enough. Every single time when I am taking a really deep breathe it start to hurt a lot and that is why I need to take some heavy duty narcotics in order to reduce that pain from the compression fractures. Doctors give me those narcotics because they do know what kind of pains I am getting from them. the point is, I do urge you to go and to find an alternative solution if this is going to be possible. It seems to me that you want to do it already, but I just wanted to leave this hear so you could be all 100% sure that what you intend to do is the right decision and I would suggest to remain on them only if there’s absolutely no other solution and you already tried absolutely all of them. also I want to leave this here so maybe somebody else would read and would take care of it. there’s nothing that we should be playing about!

 

I wish you and everybody else best of luck and I hope you’ll all be fine!

 

[Summy]

Ores, I can tell you that what I really wish for you is to consult with your physicians as this is very important, to do it as often as you can and talk with them as much as you can because you need to base your treatment decisions on all of the facts out there, such as on your personal medical history and what does it feels the best and right personally for you and many others. Just remember that you can always can change your mind but this is why you need to be informed and not afraid that you may have the worst outcome. I wish you all the best and I really hope a lot that you’re going to be fine. I do know that this is a hard time and a hard decision and it is obvious that you wouldn’t want to be in the situation that you are now.. but since you are, try to do and make the best decisions. There’s an quote on this of Denis Diderot that I really like…. Maybe you would like it too…

 

There are three principal means of acquiring knowledge... observation of nature, reflection, and experimentation. Observation collects facts; reflection combines them; experimentation verifies the result of that combination.

 

[Ores19000]

Hello there Suffes, Summy and Monique and thank you very and very much for everything. I am really thankful that you gave me a lot of things to consider and think about, things that I weren’t even getting into my mind. I am very thankful for this, I am thankful to you because now I have more things to ask my GP about when I am going to have the visit with him tomorrow, I also know more things now and etc. etc. it’s really helpful and supportive. I need to say that I am now struggling a lot with the pain levels at this current moment and I am very tired to deal with them, this is the reason why I think now that unless the doctor is going to tell me that there is a very big chance that my body is going to compensate for the withdrawal of the steroids (isn’t it?), and after that I am going to resort and try the non steroid medications like for example the Naproxen and will be hoping that it would help. but yeah… you are right people… in case I am not going to get able to get up the stairs myself, or even go for a walk, or even more than that to sleep normally during the night because of the pains caused by this, then yeah… most likely I think that the phenomenon of “re taking” this Prednisolone steroid is going to be considered, but I will accept only a very low dose, the lowest dose as it would be possible!

 

And yeah, I am going to take my wife with me tomorrow when I am going to have the visit with my GP, that’s because this way she could give the doctor her impressions about this all either. I assume that this might help a bit when the doctor would see that there’s somebody who is daily watching me and knows what I am feeling. My wife is telling me that she thinks (comparing how I was in the past and how I am now) that I am nearly back to where I have been at my worse stage and I am having no reasons not to believe her… especially taking in consideration the fact that as the pain continues to get worse and worse, my mood and general well being state is getting worse either.

 

Anyway, guys, I really really appreciate it all very and very much! I appreciate all of your experiences that you shared with me, all your recommendations and your advices! they are very important to me. and yeah, I do know now even better that this medication is surely a double edged sword, this is why, tomorrow I am going to have some very serious considerations. Thanks again and all the best, will come back tomorrow with an update for sure as I want to see what you would think regarding what my doctors would tell me about this entire situation!

 

[Ores19000]

Hello there Summy, Suffes and Monique once again. as I have promised, I came here with an update and here’s it based on my visit with my GP today that is regarding those pain problems that I have which have returned back with a vengeance after I have discontinued to use Prednisolone.

 

So well, I am going to try to arrange them by points and the first one and most important (in my opinion) is that I have been prescribed to take continuously Prednisolone at the lowest dose that I can which means I need to use 2.5 mg a day of it.

 

The second point is that I have also been referred back to the Consultant Rheumatologist again.

 

The next and third point is that I have now been referred to a “pain clinic” as well which is something new for me and that’s why, so far I am not very sure what that exactly is, but they also may decide on some sort of injections too?!

 

And now, I guess the last point is that I have lately been referred back to the orthopedic surgeon for the possible surgery that I might have on my knee.

 

One more thing that I assume it should be said here is that my GP has told me that I have also been on a quite high level of Pain killers as well and that this is why he is not feeling comfortable to increase my dosage more taking in consideration my pretty “complicated medical history” as he told me. he also told me that he is going to try to reduce my dose of prednisolone gradually even lower as I have told them very clear that I would really wish not to take Prednisolone at all if that would be possible and he told me that he would try getting it down by 0.5 or maybe even 1 mg every couple of months, until, maybe, I would either reach not to take anything at feel fine or be on an dosage that is even lower than 2.5 mg a day. but he warned me that in case this method is going to fail, as well as the pain management and so on is not going to give me any relief at all, then he told me that there’s nearly nothing else left to do than to simply stay on the lowest dosage that is considered to be effective by giving me at least some relief which has been approximately 2.5 mg of Prednisolone per day.

 

It is obvious that I have asked them what might happen in the worst scenario when I won’t be able to get down my dosage at all and this would mean that I would need to stay on 2.5 mg a day. I’ve asked them about the long term complications that might occur as a result and they told me that there were several possible side effects that might be, like for example lowered immune system (I’ve seen someone already mentioned this above, saying that I would be easily exposed to viruses and fungal viruses as well) and bone weakness which is well known. One sure thing is that I am going to try to eat whatever has vitamin D and would raise my immune system and I am going to take supplements as well trying to avoid these 2 side effects even if I would take Prednisolone continuously.

 

So well, as a conclusion I can tell you that things are currently back in the air for this moment… at least I am now on a holding pattern of the drug and this is why I am not going to be in severe pain for a very long period now which is the good news. Regarding for the bad news it seems that I already mentioned them above.

 

So that’s pretty much everything. One last thing that I would like to ask you guys is... maybe there is somebody who is already on 2.5 mg of this medication for a very long period of time? please tell me what are the bad effects that you experience? but generally, maybe anyone here has any views regarding the long term use of such a drug on such a dose? Thanks!

 

[Suffes]

Hey there Ores once again. to be honest, analyzing what you have said up there I would say that that’s some great news out there which I can congratulate you! to be honest, I am thinking that one of the most important thing about the long term steroid use is that you need to be very careful and very vigilant in reporting back to your physician absolutely anything that in your opinion might be related to the intake of the steroid as far as we are talking about the side effects. sometimes it might seem only a paranoid thought and logic might tell you that this or that side effects can’t have anything to do with the steroid but you still should tell your physician about it because, yeah, in fact it might have something. what’s also extremely important is that you need to mention that you use this steroid to absolutely all of your treating physicians and (NOTE THIS) ALWAYS prior to absolutely any surgery that you might have and it does not matter of how minor it might seem to you! Of course I can’t be sure but I am thinking that in case you are going to educate yourself very well on the possible warning signs or the red flags that are concerning your steroid therapy and to tell absolutely all of them to your physician as soon as you have spotted them then most likely you are going to be fine!

 

I should tell that it is also important for you to keep an close eye on your blood pressure and that’s especially if you are having a high A1C or not mentioning if you are diabetic (buy yourself a blood pressure measurer but if you have either of them then I can assume that you already have one), on your weight (I guess you have weights) and also keep an eye out for your moodiness, mental changes or thoughts that you know they aren’t “yours”. Besides, what’s even more important is that you keep an extremely close eye on absolutely any cuts at all, on lesions, bruises or infections absolutely anywhere (and keep in mind that it doesn’t matter how much insignificant they might seem to you) that do not seem to be healing on the schedule or appeared absolutely out of nowhere and you know they shouldn’t be there. these are some of the warning signs and something that might happen on a long term use of Prednisolone! I wish you all the best!

 

[POCos]

hey everybody. I am currently on the Hydrocortisone for my adrenal insufficiency as my doctor said. in the beginning, my doctor tested me and she has diagnosed me with the Addison disease! If it would be true then I would need to be on the steroids for my entire life with that disease. So well, after 2 other of my doctors have looked very carefully at my scan of my glands they have told that they were, in fact, fine, and they were most likely capable to produce the cortisol that my body needs on their own without any help of additional steroids. That’s why I have been walking around for a while without a diagnose and doctors didn’t knew what I need to take. However then later they figured it out and when I have been diagnosed with this I had just finished a year and a half of the excessive epidural injections for my lower back pains. My pain management doctor gave me 7 of them and now I do know that this has been too much, it has been in excess, it did not helped me at all and it only made some money to my doctor… too bad I didn’t know this back then.

 

Anyway, I have been told later that even at 5 mg per day of this medication hydrocortisone it is going to take me approximately half a year (they told that it would be 6 months) to finally ween off from it! what I am trying to say is that you have been on Prednisone for a longer period of time, you have been on a higher dosage and generally prednisone is a stronger medication… taking all of these points in consideration I can think that you just needed to use those few mgs (2.5 mg) a little bit slower and stay on them for a little longer. Having this said, it is not wonder that you are experiencing what are you experiencing. I think that if you would ween off from it half a year as I would then IMO you are still going to have some pains as well, however I think that it is not going to be so so bad (and all at once) as it is now. but you need to slow the last few mgs down. having this said, I honestly think that you stand good chances that in case after a few months your doc would get you down to 2.0 mg, then after a few more months to 1.5 mg and then after some more months to 1.0 mg and obviously, lately, to 0.5 mg be on them for a couple more months until you stop to take it completely to have little to no pains at all. of course this is going to take some years but at least you would see some progress, and after all – it would be some years and not your entire life. still better I think. This is very frustrating I do understand, but if that’s what is required then that’s what I would do either. But anyway, this is only my personal opinion and I am in no ways a doctor. I am just sharing with you what seems to be logical to me based on what you wrote up there, on what I have read about these medications and what my doctors told me. even though I do know that this all might be  wrong… but at least I’ve tried to help. anyway… trust me that I am very sorry that you are now dealing with all of this and you need to get through this situation. It sucks… I know.

 

[Julieta]

Oh well… I really do feel for you and I am also sorry that someone has to get through such a situation. I can tell you that I have been on some high doses of steroids intermittently for approximately one year now (or maybe a little bit less than a year). I do know very well that in the time these steroids really does help with the inflammation and so on and so forth, the side effects that they are having are really terrible and I do know this because I have felt these side effects on myself. I didn’t had very much (though it seems that they are not so many, but when you have them then they seem to have zillions of them), but they were extremely bad all of them… I have been suffering from bloating, both appetite changes and mood changes either but the worst out of them all are those terrible hot flashes that I have been getting especially in my face… it couldn’t be explained it better… they are surely some double edged sword medications… in the time they get you rid of some very bad problems they give you others…

 

Anyway, I really hope very and very much that you are going to be able to find a good solution for this… maybe you would even find something else that helps. good luck!