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Prednisone and Rheumatoid Arthritis – The pros and cons

We discuss in this podcast:

  • How Cecile developed inflammatory arthritis
  • The challenges she went through while dealing with different drugs
  • Using a mix of prednisone and Methotrexate
  • The benefits of prednisone compared to other drugs
  • The side effects of prednisone
  • Stopping prednisone and its consequences
  • Symptom reduction and long term strategies
  • Adding Enbrel to the mix

Clint Welcome back. Thanks for joining us today on the podcast and today I’ve got a guest called Cecile. She’s lovely, bubbly, vibrant and irrepressible. She’s been part of Paddison Program support now called rheumatoid support for a long period of time, where she inspires others with overcoming not just challenges with her inflammatory arthritis, but all sorts of external pressures that we all face in life from different social work and all sorts of areas. So she is an incredible human being. And I’ve invited her on several episodes so that we can compartmentalize several topics that are really important that she has got some great insights about. And so prior to recording, we’ve listed some really important topics that we’re going to cover over the next several episodes of the podcast. And today, we’re going to meet Cecile. She’s in the Netherlands. She’s going to talk about how, first of all, she developed this disease and worked through some of the challenges with the disease and talk in with focus around prednisone. It’s such a both a great drug for giving you instant pain relief and a lot of pain relief. But it’s also can have a lot of serious side effects when it’s used long term. So prednisone and Cecile story is what we’re going to focus on in this episode. So, Cecile, thanks so much, all the way from the Netherlands. How are you today?

Cecile Hi, Good afternoon. Thank you very much for having me. It’s really a pleasure to be here and and to be the one on the podcast. Thanks s a lot. I’m doing very good. I already had my Bikram yoga session this morning and already biked around 20 km or so. All good.

Clint Oh, that’s excellent. Gosh, you’ve certainly got your exercise duties up for the day. Well done.

Cecile Thank you.

Clint And now let’s hear about your experience. How did all this play out for you and how did you end up on this love-hate drug called prednisone? So walk us through and get us to that point and then let’s talk about in detail on this episode how you got off that drug, because so many folks are stuck on it. They don’t know what to do because every time they lower it, just a tiny amount more inflammation returns.

Clint Their doctors seem comfortable to keep them on it because maybe nothing, no other drug seems to work. I really want us to get into that. So lead us through your story into the prednisone period of all of your life.

Cecile Sure. So for me, it started in 2017. I was going through a lot of personal stress. I was going through a divorce and it started with one knee. One morning was so big I just could not even walk when it was so painful. I assume my GP sent me to get an injection in the knee.

Cecile They did some X-ray, couldn’t see what was going on, got to the injection and I could walk the next day. Of course, they knew after plenty of injection in the joint. Then next March, the other knee and the months after that, the foot.And then one night, maybe two weeks after the foot. So every time injection, so I could just go on. But we had no clue what was going on. We took an X-ray. I got MRI, nothing was showing up except a big, big inflammation in the joint.

Cecile And one night I heard a scream. So I wanted to get up to go and see whose kid was having a nightmare. And actually, I could not get up because I was the one screaming in my seat of pain on my shoulder. So I first came, went to my GP right after that, telling her I was expecting it was Rheumatoid Arthritis because I have two persons in my family who have it and I research a bit and it looked very like what they had. But she was sure it was not rheumatoid arthritis because it was not symmetrical.

Cecile But a week after I came back to her with both my hands red in double volume and I was like, okay, now symmetrical enough for you. So she sent me to the rheumatologist and right away we did the all the tests and we knew very fast it was rheumatoid arthritis.

Cecile At the time, of course, they just went where my GP sent me and I didn’t think too much about choosing a rheumatologist. So I was, let’s say, faced with the usual behavior in those cases. So I’ve been told when we had the results. OK, you have this disease. This can only get worse. Maybe we can contain the progression for quite some time. But you need chemotherapy and prednisone.

Cecile For how long? Well, for the rest of your life. So I was really in shock. First to be confirmed to have this disease, but also the attitude of the rheumatologist who was basically telling me there is nothing you can do for yourself. You’re going to take drugs that are going to save your joints. But have also effects which can be lethal and just accept it and just go with that. Every question I had was dismissed to every question about the methotrexate.

Cecile But do you want to walk? Yes. Sure. So it was really difficult at first to navigate because every time I came with questions or I was very clearly annoying the rheumatologist, one even told me, you know. “I’m so tired with patients like you, why can’t you just take the meds and that’s it. Just accept it.”.

Cecile So that was a pretty hard time. And the usual approach medication wise in the Netherlands at least is to start people on a lower dose of Methotrexate, a very high dose of prednisone, only around 30 milligrams a day. And slowly over usually eight to 12 weeks increase in Methotrexate to the maximum, which is here 25 milligrams a week and decrease the prednisone somewhere between five and 10, depending on patients, and the doctors don’t see any reason to lower it if everything’s OK.

Clint Mm-hmm. Yes. So I once described that as a prednisone bridge where you’re bridging the, you know, Methotrexate until it begins to work. But that bridge can lead to a road and that road can lead you to the highway to hell. The problem is that you don’t know how much of your improvements when you’re on those pairs of drugs are coming from the Methotrexate as it goes up in dosage versus prednisone. And when you know that the prednisone works and it’s addictive and it develops the you develop this emotional dependence on it, you know, what’s eight, eight weeks or whatever that you’re meant to be on, it can sometimes turn into eight months or years. Can’t it?

Cecile It turned into two years for me. That’s exactly right.

Clint Right.

Cecile So first I tried to go to the maximum Methotrexate at first. And I just couldn’t go with that at first, because when I reached 25 milligrams, I had this brain fog, which was it was impossible for me to function. I already had huge fatigue. I didn’t know if it was, of course, the disease or the Methotrexate or both because that could happen. But then suddenly this brain fog and I just could not understand my job. I would forget everything.

Cecile I really felt in another dimension. And I told my rheumatologist I just cannot live with that. That’s not an option. So we lowered the Methotrexate back to 20. And this is when, of course, the rheumatologist said Oh, OK. But if you do that, you don’t touch the prednisone. Then you stay at 10. So that was the first reason not to touch the prednisone and to keep it pretty high even for the (inaudible) Basically, I stayed with that for one year and a half, it was not definitely not perfect, especially because it took me a very long time before I realized that I could maybe try something else on parallel to all these, another approach. So I said, basically those 2 medications until December 2018. And then I had a lot of stress again and I was moving again, buying a house. And the day after my final move, I was in so much pain, really, as exactly have you before being diagnosed. For a few weeks. And then my rheumatologist told me unfortunately, it seems that the methotrexate is not working anymore, the methotrexate alone. So he waived the prednisone. So this is when I started on Enbrel together with methotrexate, a lower dose of Methotrexate at first and (inaudible) within two or three weeks. So I was pretty lucky on that side.

Clint And this whole time you’re on prednisone.

Cecile Yes. And in the beginning, I did not even know the reason to quit prednisone because my doctor told me it was safe. here. Less side effect than Methotrexate. So for them, it’s a medication which you can easily go on without any problem. Plus, I didn’t go through the usual side effect of the prednisone because when I started a few months after I started the prednisone, I changed all my nutrition. And I lost 30 kilos, so of course, I don’t have any of the weight issues that many people go through, so my doctor was pretty happy to keep me on prednisone for as long as needed.

Clint Yes. He didn’t get the moon face issues and the crazy can’t stop eating issues. What about the sleepless nights? Did you have big heart sleepless nights?

Cecile Terrible. I could sleep until 4:00 in the morning and every night at 4 or 3 o’clock I would wake up and impossible to sleep again. So it’s really exhausting in the long run.

Clint Well, I think it’s worth just jumping in at this point. And there might be some people watching or listening to this thinking. But what’s the big deal like you trying to focus on prednisone in this episode? But like, I’m taking that drug and my doctor tells me the same thing. Why are we trying to accelerate the efforts on that drug and not the Methotrexate or the Enbrel? Why we focussed on prednisone.

Cecile Yeah. In my experience, I can see before and after. Because I spent two years on prednisone. When I was on prednisone and I was doing everything else by the book. So what I mean is I was really putting a lot of effort into my nutrition, on my sports and on my stress management. I was also working at the time a lot of my mental health because I had the depression, but lots of reason, of course, for depression. And I tell you also this tiredness issue caused by the sleepness night. And that I could never feel in my body any healing, I could feel improvement, of course, you know, when you go to Bikram and you can see you do more and you measure your pain and you measure your stiffness. But there was never a point where I would feel, hey, wow, I can take much more of that than before or so.

Cecile I could never see an improvement in the situation of what my body could take actually about even if it was more stress or no nothing, nothing was better. But of course, the management of the symptoms. When I finally managed to stop the prednisone because I had to try three times together. I would say after three weeks, the change was absolutely amazing. First, my mood. When I could see when I was really capturing the prednisone for the first time, when I was finally successful, the first weeks without prednisone, was very hard for my mental health. I had very dark thoughts. Happily, I knew it was about the prednisone so I could manage it and just hanging there, knowing that it was just a phase and the next day would be better. But that was really important. And then when I was finally after I would say three weeks, I realized that I could sleep again. And that was huge. Finally, I need to use an alarm, that was the image so I could sleep. I didn’t have these bad thoughts. I felt it’s very strange, but I felt like a weight was taken out of my mind like something was really constantly weighing me down. And it was gone.

Cecile And after a few more weeks, how I felt in my body was absolutely incredible. Not only I had this crazy energy because people talk a lot about that, you know, when you move from a regular diet to plant-based more food plant-based or when people start the diet part of the Paddison Program. Everybody talks about energy, a boost in energy. And I was always like I don’t know what she’s talking about because I don’t have that. And suddenly it was there. But to the point where I was biking nine kilometers to my Bikram yoga, doing one hour and a half session, biking back another 9 km and still finding myself OK. I cannot see it. I need to bike some more. So I’m going to go in the woods in like two hours and then I will maybe be OK. My kids were tired. They were like: Mom, please give us a break. No, we don’t go there. No, stop. So that was really a huge, huge difference. And then slowly, you know, during the summer, I was traveling a lot. So anywhere moments where I could not be exactly perfect in my diet. I was very strict with my exercise and my stress and my sleep. But I was doing Bikram yoga everywhere I could by myself because there was no studio around.

Cecile And I was just doing that daily when I was on holiday. But then, you know, I visited a friend in the south of France, he was growing his tomatoes. For two years I didn’t eat tomatoes and I can’t stomach it. But you know what? It’s okay. I’m sorry. I need those tomatoes. So I had a big plate of garden, own grown tomatoes, and it was absolutely delicious. And I had absolutely zero symptoms, which was amazing to me. I didn’t try that again because I thought, okay, maybe that was also the special ones because they’re from the garden. No pesticides, nothing but it was amazing to feel that. And then I started to see that I could have nuts once in a while, maybe not every day for sure. But I think we have something like that once in a while. So it’s always really feeling so, so good. And I really had this feeling that there was some progress going on, that there was some healing happening. I never, ever felt that at any point when I was under prednisone.

Cecile Somedays well, yet when you need to stop hurting because you are in so much pain, there’s nothing working and you just need a break just from the inflammation to go down and to take over control again and each time so another drug can help you. I mean prednisone is magic. It’s perfect. It’s lifesaving. But this cannot be a long term drug. That’s the problem with most doctors. They don’t. They see how fast it works and are so happy with it that they don’t see any problem staying on with that.

Clint Yeah. If your only focus is on symptom reduction at no other with no other consideration, then obviously it’s a 10 out of 10. But where the delicacy lies is with the long term strategy. If we’re trying to heal our gut and be healthier and to have less symptoms long term, then the strategy that I work with people when I look at their current situation and we’ve got the drugs, the diet, the stress, the supplements, the exercise. We look at these things and we say, how are we doing in each category? If I see someone’s on prednisone, then that becomes the focus. Our focus is to have to get off that drug. And again, the emphasis is on that because of exactly what you’ve described. The prednisone prevents the healing, it prevents all of the other efforts that we’re putting into having the amount of grip or leverage that we need over the disease. So it causes more leaky gut. It has the ability to make the results of our food testing unpredictable. So instead of having consistent days one day, for some reason, you know, a food that was previously eaten successfully seems to aggravate the body again for people who are on the steady dose of prednisone. And these two things alone are enough to make it a real obstacle to healing. So we’ve got leaky gut and we’ve got unpredictable days and we want the opposite. We want to heal our gut and we want consistent, steady, repeatable days like Groundhog Day so that we can then test other things other than the foods even. And so it really becomes for me, the number one first major milestone when working with someone is to get off that drug, but not at the cost of more pain coming back. Just as your rheumatologist with the right intentions right at the beginning, it should only be removed if the inflammation suppression that it provides can be substituted with something less harmful.

Clint And that could be exercise, that could be the dietary changes, and even if you’re on a good diet can be improved further. That could be with stress reduction, it could be with some seriously strong natural pain reduction supplements. Or it could be in in many cases, all of those things and a disease modifying drug like Methotrexate or a biologic like Enbrel. People think people use the phrase I’m only on 5 mg of prednisone. That’s all I’m taking. Well, my response is, well, you’re in a lot of trouble because if you’re on that as your major, if that is the strategy that you have for your disease, you will have this disease at the same or more level in the future. In 12 months from now, it’ll be the same or worse. And then it will get worse and worse and worse because the prednisone makes your gut worse and provides you with an inability to heal. It’s a shock for a lot of people who think their inadvertent comas only on prednisone that 5 mg a day of prednisone is probably the pain reduction equivalent of about 20 mg a week of Methotrexate. That’s probably. I mean, if you think of it in terms of pain suppression, it’s probably something like that. So they’ve basically already on a very strong anti inflammatory medication and one that is going to cause them to slide. And so we need to be looking at all of those other options that I just mentioned a moment ago. And you know, when you introduced the Enbrel on top of the Methotrexate and that’s where you’re up to in your story at this point, we all want to hear next that was enough for you to flip it, which it was. You’re able to get off it.

Clint And we’re going to talk about how you did it now, because even that even it’s such a difficult drug to get off that even the Methotrexate and the Enbrel doesn’t mean that you can just stop taking it and feel great.

Cecile Exactly.

Clint Let’s talk about that.

Cecile Definitely. So the good thing was the Enbrel kicked in pretty fast. So I was given the confidence that it was working because, of course, when you start a new medication, you’re always worried that maybe it’s not going to do anything for you. So this one was working. And I did learn in the past how difficult it was to get off prednisone because I tried that twice before that. One is a very stupid way, you know, like, oh, I’m going to start to Paddison Program let’s stop the prednisone 2 days before.

Clint . You stopped it right before? It’s like one of my first things in the book is like, do not stop medications before you start, you know? That’s alright.

Cecile Yeah, you’re right. You’re right. So then so I discuss with my rheumatologist because he knew I was really adamant about stopping it. And in the meantime, I found a rheumatologist who knows one thing or two about lifestyle medicine and he’s really supporting my actions. And he’s always so happy to see me try anything you would suggest, which is not medication, even if I fully trust him on medication.

Cecile And I often what I would say, I always follow his advice on medication because I know he has the same point of view as me. So all drugs that can help us are absolutely amazing because they give us room to heal. And that’s his approach too when people are OK to follow it. So basically the idea then was to taper very slowly. So I would taper it. The challenge is for Netherlands, we only have five mg for prednisone so you cannot taper one milligram at a time. That’s just not an option. So we decided to go 2.5 mg at a time. I honestly tried even to source abroad one milligram pills, but then it would be out of Europe and it was so difficult to get it is that I didn’t go for that. So we decided to go by 2.5 milligrams. So the idea was to take seven weeks to taper 2.5 milligrams. So the first week, six days, maybe the high dose one day with the low dose, second week, five days with the high dose, two days with the low dose and so on. And a week when there is nothing is where we only have to low doses repeated twice. And then we start again. We have 2.5 milligrams less as a low dose. So he took I was at 7.5 grams when we started. So it took quite some time.

Cecile And I could feel very slowly when I was reducing a little bit of pain. But nothing that would really worry me much. So I was just trying to go more to Bikram yoga, be more cautious with my sleep, with my stress management, be more strict with my diet. Maybe cut back a thing or two that I was not sure about. So I was pretty confident I would do it without any problem and looked really good. When I finally arrived the week when I didn’t take any more prednisone. This is when I understood my pain because I think it’s the worst thing I ever had to do. My pain went so high, so fast. And I was still using of course, Enbrel and Methotrexate, nothing changed there. But my my pain really increased a lot it was absolutely crazy. I was really scared. And at the same time, my mental health really start to worry me. I was experimenting a lot of sleep issue and I was experimenting also a lot of very, very dark thoughts. Again, I knew that would be likely to happen. So it was easier to just acknowledge and let it be there and not just not act on it, but it was it was definitely scary.

Clint Times like that is when you really need to have the right support around you. I mean, you still fresh? I mean, I think when it comes to something like a divorce, fresh is still like two or three years. I mean, it’s just such a massive intervention and it’s severance in your life that I mean, there’s still residual pain from that and disruption from that. But I remember when you’re going through this and Ellen, one of our much-loved members within rheumatoid support, she made it clear, she said this is the devil’s drug. When you try and get off it, it will mess with your mind in ways that you can’t imagine. So you need to know that this will pass and know that you’ll adjust and all those dark thoughts and stuff. It’s real. You know, it’s real and it’s dangerous. And so, you know, you got to dig deep to get through that, don’t you?

Cecile Yeah. And it really helped me to be on the forum because I knew I have the support and experience of other people telling me you’re right, that’s the prednisone. Don’t let it in. Just (inaudible)there, but just move on because that’s the prednisone is going to stop. So that’s really very important to realize and hear it and realize, OK. So I’m not going crazy. If I am, which sounds very nice. And then I thought, what is the most extreme thing I can do? Because this is so tough. It is so hard. It’s really the worst ever I’ve been when I was in Methotrexate. So what are the most extreme measures I could take? And I could think of two. One was, OK, let’s get to become five days a week.

Cecile So even if I have to go there crawling, let’s go. And the second one was intermittent fasting with only raw vegan.

Cecile So really not even the baseline because there is so basically the baseline. But without any good fruits. And we (inaudible) fruits and was I lucky to stomach. So I can always eat like banana, blueberries, and strawberries. Those three ones are my lifesavers and I can always eat that. So it was this and a lot of salads. And that’s when I would eat and I would eat once a day, a lot of course. Just once a day and with crazy become casual and of course, biking there. When I bike some days I just could not and I had to take the time. But most of the time when I bike and it was honestly the three hours week of my life. And after reading about this to truly accept it, the pain was really fading away. It almost at once compared to the pain relief, I could experiment in the past with, you know, his meds, et cetera. It really melted in a few days. So the pain may melt away this energy burst, which always goes so much as it even scared me a bit because it was really huge.

Cecile People around me were scared because they saw me, you know, by the states. Definitely. They knew I was, as they say, pain with my meds, even if I was not self-medicating. But they were worried for me, concerned for me because for most people, no that’s not a solution to kill yourself at sports. And then eat almost nothing. And just once a day that cannot be the solution. And then now you’re a bit crazy and you are always jumping all over the place was good.

Clint There’s no doubt about it that when we take it to the extreme, we get some funny looks, some funny comments, and concerns. There’s no doubt about it. As soon as you go raw vegan and do what you described, that’s when it happens the most. That’s when the comments start coming and the concern looks. And I went through that, as you know, I did eight months of raw because of the baseline foods as we know them from the start of the Paddison Program, I couldn’t eat anything without extreme pain. And in hindsight, I was probably under medicated. Right? So I should have probably been on more meds because if you can’t eat the basic quinoa, buckwheat, and salads without being in a lot of pain, you’re not enough for the right medications. That’s just not good.

Clint So I was instead of bumping up the Medicare, I went raw as well. And for me, that enabled me to stay on the same medications. I did Bikram yoga every day, just as you describe. So you and I found the same solution to a serious problem which, is high inflammation. Not wanting to go and do further medications and so forth and it’s a temporary thing. Someone asked me, why don’t you make the start of the program completely raw? Because I don’t want to worry about people who are doing it. I want it to be nutritionally sound and calorically complete for a person in their daily needs. I don’t because raw is just too extreme to be a program. But can we do it if we’re up for the challenge on an individual basis just because we’re trying to get through a difficult time? In the same way, intermittent fasting is not a long term sustainable program. Is it effective? Most definitely. And so doing raw vegan, lots of juicing and stuff, it’s like a fasting intervention. It’s extreme. It gets tremendous short term results, but it’s not a long term thing. But can it be effective? Just like it’s effective to take prednisone pill from time to time, that’s effective too. And as we’re discovering and sharing in this episode, it shouldn’t be a sustainable long term approach. Well done. You got through this tough period and the mental challenges and everything and came out the other side to the last battle.

Clint It’s almost like the climax or the finale of a movie where you’re up against the Devil Dragon and it doesn’t want to go down without that last fight. It wants to hang in there and swing. And the hero or the heroine has to pull out everything she knows. And she’s got to go to the really to her extreme levels to be able to defeat the evil prednisone devil.

Cecile Yeah, (inaudible) the funny thing was I have still some pills of prednisone left and I was really debating a friend, should I throw them away or not then one that’s. Come on that’s stupid. Because if you are dying or in your living room, you still did something just to go against me. So I’ll just be going to keep just a few in the closet then. But when I was going through these, I knew they were there. There was like maybe just a solution to maybe just one. There’s no you know, it’s not. But you really have, your brain playing tricks on you. Because. Yeah, that’s my addiction like many others. And maybe just one, maybe it’s not so bad if I just take 2.5 and just for one day more and it’s that. Well, I know exactly how it would have been if I would just take one. That would just be back on it right away and there was no. And that was not an option anymore. And also I was lucky because my old mother, who supported me, and I expected when I was about to do it. You thought it was a good thing to do is the one actually were introduced me to intermittent fasting.

Clint Your rheumatologist introduced you.

Cecile That kind of doctor? Yes.

Clint So I want to emphasize this point because we’re going to have some of our audience say maybe you were negligent by stopping the prednisone. Clearly, you needed to stay on that because as soon as you stopped it, you’re in all this pain. But I think the point that we’re trying to make here, or the experience that you’re sharing, which is consistent with what I’ve seen with other people, is that there is a whip in the tail that you experience when you come off the prednisone. But when you’re rheumatologist is on board and you’ve got these other very strong drugs in your plan already with the Enbrel and the Methotrexate, that if you can get past that sting in the tail, that whiplash at the end when you come off it, that the grass is greener afterward and that it can be done, and that once you achieve that and overcome that hurdle, that is, therefore, becomes easier with everything after that. Is that fair to say?

Cecile Yeah. Because I could really see after that. For example, you know, if I had some stress again that I did not manage so good. Of course, I could feel it, but not with the same extent as before, when I was with prednisone and sent back and always upon an issue, you know, of some issues with your diet or if you have some issues with stress, et cetera, or she was going sport. But the length of the setback, the duration is way shorter now that I’m not on prednisone. I recovered much faster. It’s really impressive. It’s a huge difference. That’s for me that’s true also showing me how important it was to get off. I was really closely monitored by my rheumatologist because he knew it was a tough time. And he’s very available for me. He would react within 24 hours to e-mail I’m very lucky. And he gave me so when I told him about my plan. He said, good. I give you one month to see if it’s working. If you see you don’t have an improvement in one month we need to discuss again another plan about medication. You need to see an improvement in one month. I know you will want to stay with the broad again and very strong intermittent fasting for a while. But please let’s say three, four months maximum just to really settle and be confident that everything is ok. But then you need to go back to more normal food and become more (inaudible) again because this is not the long term. It was right in the way that you know once it’s working and it feels so good. You don’t want to take any risk on you. I didn’t want to try any food because I think I don’t need it. I feel so good. I don’t want to you know, I don’t want to risk anything. So it was another step to get out of the stage where I was really saying, no, I don’t want to try anything. I’m good there. I’ll just stay there and I’m not changing. So after three, four months, I could reintroduce already quinoa and at that point, without any issue.

Cecile But it was more a mindset for me to say. Ok, I am fully sure now that I’m really on the healing path. Now I can move on and I can start again to build it up slowly. But building up also it was and also winter because I don’t think I could have done it again. (inaudible) over again (inaudible) that’s difficult.

Clint And also it’s also good for audience to understand that you and I talked about recording this topic and your situation some months ago, and we both agreed that it was suitable to wait until you were back on to more of a conventional platform of foods and just more stable because it’s hard to relate if someone’s listening to this who is eating more broadly and exercising less extreme and wanting to get off the prednisone. It would be easy to dismiss this as too radical. And so we wanted to wait until you’re back on to regular or at least regular in our community, Paddison Program community, regular foods, a more diverse, cooked and raw plant-based diet that meets your nutritional and calorie needs. And so whilst it still may seem a little bit a little extreme, if you’re eating a Western diet, it’s by no means extreme for people who are familiar with eating a plant-based diet.

Clint The message is that you use suitably got the support of more conventional rheumatoid arthritis medications to enable you to get off the giant destructive painkiller that should not be taken long term. It had a huge kickback effect as you finally stopped taking that steroid. But you hung in there and you did some short term hardcore interventions with your exercise and your diet to really clear out that the impact of that. And as a result, you’re on the other side of that hill. And now you’re able to eat in a way that will enable you to heal without the negative effect of the prednisone, the steroid, and life now can and has already improved tremendously. And you’re now on a path. And I know this sounds like a little dramatic, but really now you can actually just begin your healing journey because all those two years that you’re on, that steroid you’re spinning your wheels, you’re pedaling that there’s no chain on that bike, you just going nowhere. And so finally now you don’t have someone holding hands behind your back as your being punched. You can now swing and make some progress.

Cecile Definitely. And to the point that actually that, we discussed with my hematologist and next month’s we’re going to start stoping the Methotrexate.

Clint Wow, congratulations that’s exciting. So your blood mark, is it good? Everything’s going good?

Cecile Everything’s going good there. I don’t have any episodes without knowing what it was. Exactly, knowing the reason. So, now we feel confident we can slowly start. I was actually quite sick in November and December. We got a lung infection and this and that and my mother just was like, oh, look, you’re already stopping actually because you can’t even take it.

Clint You’re referring to the Enbrel because the Enbrel can often be responsible for an increased risk of infection.

Cecile But I have also had an (inaudible) fever. So I had to stop my Methotrexate. I think Methotrexate I just keep already it in three or two months and just keep Methotrexate three or four times and just keep Enbrel five or six times.

Clint Wow. A weekly of Enbrel as well.

Cecile Yes. So my rheumatologist said that very good you are already recoverying and you know, so that should give you more confidence that you can do it. Okay.

Clint Your rheumatologist sounds like quite a character. Interesting.

Cecile Yes. Really he’s a researcher and he’ll be supporting research on lifetime medicine.

Cecile And he’s really advanced on that in there.

Clint Yes. Another topic. Okay, great. Well, what we might do is we might leave it there. We’ve really I feel adequately covered. This concept of prednisone and why it’s not then I don’t refer to it as a rheumatoid arthritis drug. I don’t see it as a rheumatoid arthritis drug. I see rheumatoid arthritis drugs are the ones that when that were discussed only at the rheumatologist, which are the disease-modifying drugs of sulfasalazine and and and, you know, Methotrexate sees a plaque when there’s these sort of things. I mean, these are immune-modulating drugs. Okay. And then we’ve got our biologic drugs and a range of those, of course, that we all know. So those ones I consider to be suitable if they’re prescribed by the rheumatologist suitable in terms of our parallel challenge of healing the gut. And I just see prednisone as this as well for all the reasons we’ve talked about this interfering mechanism in our attempts to heal. So if you’re stuck on it, I hope you’ve enjoyed this podcast with Cecile. I hope you’ve taken some notes and maybe watch it back a few times to try to motivate yourself to talk to your doctor and see whether or not you really should be upping one of the other medications which are more suitable. Or are you doing the Paddison Program?

Clint Are you working on your diet? Are you exercising tremendously? Are you eliminating all your junk supplements that you don’t need, like fish oils and these things that really are wasting your money and get on to some things that may actually be able to help you to suppress them? Inflammation in parallel to the big-ticket items which your diet and exercise and see whether or not you can make some progress in not being dependent on a steroid because you will see the benefits tremendously when you’re over that steroid heal. And on the other side, just like Cecile has done, and that is when healing can begin until you’re off, that steroid you’re spinning your wheels. You’re going nowhere. You’re doing all this hard work. But the steroid is holding you back. So that is the sort of the message, I guess, in this in this podcast.

Clint And as we’ve also kept up as a theme throughout this podcast. We’re not anti-medication, we’re pro progress. And if a medication, just like your rheumatologist said, is best to minimize and come off as many do.

Clint I’ve had rheumatology I know of rheumatologists that say they don’t prescribe prednisone at all because of its effects that we’ve talked about. We haven’t even mentioned the osteoporosis that it creates. It stops vitamin D absorption. And I didn’t sit down and create the big list in front of me before. I used to have like something like a dozen list in my head of the thread design challenges.

Cecile We were talking about the 3-centimeter hole in my bone (inaudible). But definitely I think that was and these are related.

Clint You developed a hole in one of your bones.

Cecile It’s very likely related.

Clint All right. Well, might we might get into that as we cover another couple of topics with you over the next couple podcast episodes, we’re going to get into some very interesting stuff. Our next one is going to be why diet alone just isn’t going to cut it. So we can talk about that in our future episode for now. Thanks to Cecile. You’ve been so great and gracious in sharing your story and giving us those helpful information about how you got off prednisone.

Cecile Thank you very much.

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Click Here to Leave a Comment Below
Prue - February 7, 2020 Reply

Hi Clint
Another great interview w Cecile Would love to get off steroids but very difficult
Thanks for the inspiration
Best, Prue

Mari - February 7, 2020 Reply

This was very helpful to me. I really didn’t quite realize the prednisone, that I’ve been on for 2 years has been truly setting me back. I have vilified all these other drugs more than the prednisone and have feared getting off it. I eat plant based foods, take a lot of supplements and my arthritis is still progressing – making me feel like somewhat of a failure. So glad I listened to this tonight. I’ll be talking with my rheumatologist tomorrow. Thank you for all you do to make this disease less isolating.

Brad Smith - February 7, 2020 Reply

Amazingly informative and motivating.

Cristine Davis - February 7, 2020 Reply

Thanks for sharing this, it gives me hope. We (rheumatoid sufferers) really need to compare notes this way. Thank you

Marie - February 7, 2020 Reply

Hi there, this podcast got me so motivated. I am taking 5mg Lodotra every night 22.00, so the prednisone gets free over night and I can get up. That’s common here in Germany. Since 2013 we never reduced it. Reduced Metex or Orencia, but never Lodotra. In bad days I have to take a Dosis during the day.
My diet is a problem too, don’t wonna do it so strikt like Cecile, but have to work on that – motivated. Same on sports in pain, I did not find a way. Thanks for motivated me again. Tschüss Marie

Paul Vear - February 7, 2020 Reply

Hi Clint,
Wow! I can’t believe the turn around in your approach to methotrexate and Biological drugs.
Many years ago maybe 10 or more. You spoke of them as the devil. Now it seems to be the steroid has won this title.
Prednisone has become the evil drug, and now you talk of methotrexate and biological drugs as an helpful Disease modifier.

With a break of approx 1 year as a test one year into my treatment I have been on prednisone for for 12 of the 13 years since my diagnosis.

Mostly 7mg but a lot of the time between 15mg to 20 mg after flares. Where I have been given shock doses of up to 80 mg.

My rheumatologist seem to be happy with this.

Two events over the past two years did however put doubt in my head.

Once seeing a different consultant. A Spanish Dr, who was appalled to here how long I had used regular steroids.

Then on holiday in Greece I saw a Dr for a (never had before) throat infection. He too was amazed and also appalled by this steroid use. He also mentioned what I have never been told that whilst taking steroids you shouldn’t add salt to your food.

I’m currently on 2mg, tapering slowly by 1mg. ( which you can obtain easily in the uk) and have face an increase in joint stiffness and pain. Without blood work showing an increase in activity???

I listen to this podcast. Whilst waiting to go to a hospital appointment to discuss this and maybe get some joint injections for relief.

Like yourself and Cecil I found yoga ( by mistake) and before a leg injury ( tore hamstring in biking accident)last year was making some progress.

Typing this on my phone has caused my fingers to stiffen. I don’t know whether it’s due to reduction in prednisone or time of year. Britain especially Bristol where I live is damp in the winter as it situated between black mountains and Mendip hills.

I’m not vegan. But always eat fresh. And have cut down on meat intake

I found this podcast very interesting and look forwards to what my rheumatologist say today.

I do smile these days when after all medical professionals dismissed your program when I mentioned it to them 13 years ago. Only to find everyone promoting the plant based diet.

Thank you for all your hard work.

Kindest regards

Paul Vear

Laurie - February 7, 2020 Reply

Thanks for sharing on this topic. I’ve been trying to get off Prednisone and found the information very helpful. I could definitely relate to some of the challenges, like eating a WFPB diet and not seeing more energy.

Penny Wright - February 9, 2020 Reply

Absolutely awesome discussion, I have been working my way down off Prednisone, currently on 3mg & just into my fourth year on it. Great to be forewarned about the “whiplash” period. Will hit that in another 6 months or so. Just had 6 monthly blood tests & all inflammatory factors back to normal 🙂 but still not symptom free.
Thanks very much for sharing, Penny

Max Elnathan M - February 12, 2020 Reply

Amazing story. Thank you Clint, thank you Cecille

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