I am back on prednisone. There, I said it. Anyone who follows my blog knows how I feel about prednisone. It is a miracle drug and a drug from hell all mixed into one small white pill. Over the past four years or so, I have been on it more than I have been off it. However since I started seeing an integrative medicine practitioner last November, I was able to wean off prednisone at the end of January and have been off it ever since. Folks, that is the longest I have ever been off of it; FIVE whole months!
Now, I saw my rheumatologist in April which was about a month before my wedding. Because of the increase in joint pain, she wanted me back on 10mg of prednisone or Arava. It was my choice based on the side effects. I gave it a lot of thought, gave it another week, and decided to hold off. And no, I never called my doctor. I am not an advocate of going against doctor advice so please don’t leave me comments saying I give bad advice. People have sent me those types of comments and e-mails. I did what I thought was best for me. Maybe I will be right. Maybe I will be wrong. I followed up with the integrative medicine doctor, I clamped down on my diet, and my pain got better. I made it through both days of my wedding very successfully.
After the wedding, it looked to others I was doing well and I kind of was, to a point. But I was having issues. I think what was really happening was because I was feeling better, I was more active which then caused my symptoms to flare. Also mentally, I am coping MUCH better with my symptoms, especially my pain. And that makes a big difference. So whereas before I would go back on prednisone, I really tried to tough it out. I spoke with my integrative medicine practitioner again because the amino acid supplement dose she had me on was doing wacky things to my body and I had to come off it completely to make sure that was the issue. My hormones had gone bonkers and she told me that this could happen. The mood swings were enough to make me stop the amino acids temporarily at least. However she did add in an anti-inflammatory supplement called boswellia and then told me it was going to take about a month to work.
Shortly after this appointment, I realized that things were still getting worse. Now “worse” for me is all relative. Even though I was doing “worse”, I was still functioning much better than last year. However my fatigue had come back with a vengeance, I constantly had pain, tenderness, and swelling in my glands around my face, less exercise tolerance in terms of joint pain, and the issues with my bladder, which I still have to see a urologist for, intensified. My option was to call several different specialists about each issue or just go back on a course of steroids to see what improved and what did not.
Luckily, my rheumatologist is flexible about my dosing of prednisone and when I take it. She makes suggestions and also relies on me to figure out what I need depending on what is going on at the time. That is hard for me sometimes. While I appreciate the flexibility, I am stubborn about being on traditional medications because I know that most of the time, the side effects can be just as bad as the Sjogren’s symptoms. I have a lot of arguments with myself about the prednisone. I still feel very strongly that it is NOT the answer as a constant modality of treatment for Sjogren’s syndrome because it suppresses your immune system. It does not treat the cause of the illness. That being said, I think that when you are in an acute situation, there is a definite place for it. The problem for me is trying to decide when I am in an acute phase. Having a serious asthma flare or joint pain so bad I cannot walk is acute but I also think that maybe when there are several less critical autoimmune issues going on at once, my body is telling me that it desperately needs to bring the inflammation down.
I struggled with the decision to go back on prednisone because I felt like I had come so far with my alternative treatment. I also do not want to go back on the medication regularly. But then I realized that enough was enough. I needed to do something to get me through this period of time until the integrative medicine treatment plan was more effective. I was also concerned not just about my pain levels, which for the most part I was coping with, but about the possibility of what the disease and inflammation was doing to my organs. I decided to start myself on 20mg and do a one week course by starting at 20mg and tapering down every two days until I reached 5mg and then stop. Typically prednisone needs to be weaned down slowly but this is only if you are taking it for two weeks or more. I have done steroid tapers like this before for my asthma and also for severe allergy issues.
Today is Day Four and I am so grateful that I put my negative feelings about prednisone aside to try this course of treatment. I have never started at this particular dose or done the tapering exactly in this fashion. The 20mg has been enough to settle things down quite a bit but not enough to send me bouncing off the walls in a constant mood swing. I am still sleeping well and although I am a little hyper, I can sit still and rest when I need to. I am not even sure I am hyper as much as I am just feeling normal and like I have enough energy to get through the day. This has by far been my best experience with prednisone. Until I started this week course of prednisone, I did not fully appreciate how bad I was feeling. I was getting through it because my mental state was in such a good place. The gland swelling and pain is almost gone, my joints, especially my shoulders, are dramatically better, and I am not in agony when I go to the bathroom. I don’t know what will happen when I come off in a few days but I am hoping for the best. Because if the best happens, then I have a new way to use prednisone for when things get really tough and unbearable. Or for when I go on our honeymoon to Disneyworld in September.
Now if I go through this week’s treatment and things get bad again, I will have to discuss this with my integrative medicine practitioner and my rheumatologist. No matter what, I still have to follow up with the urologist. But meanwhile, I have helpful information to pass on to him about the prednisone helping that issue.
I guess what this current run with prednisone is teaching me is that my medical treatment does not have to be all black and white. It doesn’t have to be the doctor’s way or my way; the rheumatologist’s way versus the integrative medicine practitioner’s way, and it doesn’t have to by high doses of prednisone versus nothing at all. It’s about listening to my body and trusting myself. It’s about trying to combine the best of what integrative medicine and traditional western medicine has to offer while aiming for the one most important goal: to get my body to a level of functioning that is sustainable and tolerable to me as an acceptable quality of life. I know I will never not have Sjogren’s; it will never leave me. But meanwhile, I will continue to do my best to optimize my health and give myself the best life possible.
I understand completely about the love/hate relationship with prednisone. During my pregnancy I was off of the drug completely. Now that I've had my son my Sjogren's symptoms have returned, however, I am putting off taking prednisone until it is truly necessary. Luckily, my doctor is on board. After giving birth six weeks ago, I am now already below my pre-pregnancy weight! I attribute it to the lack of prednisone making me blow up like a balloon. Good luck!
Okay, I have now read this twice. The first time I really struggled – not because of anything bad – but because it hits home so perfectly that it was just "difficult" to read. Like I feel, to the smallest detail, every single thing you are going through mentally. And for me, your last paragraph sums it up. I AM an all or nothing girl. It's been my downfall since my first memories of life. It's what has made living with this disease so complicated for me in so many regards. Not just with medication, but with the whole grieving process as well. Acceptance, acceptance, acceptance – this is so very difficult. I think most of it, for me, has to do with the standards I set in my mind. In a life where chaos rules (as is what it seems with chronic illness, you never know what will happen or when it will happen) it feels GOOD to do your research, come up with a plan of action, set your goal and then do what it takes. Whether it's getting off prednisone or pain medication, starting a fitness program, beginning a meditation practice, changing your diet….It feels GOOD to have control over something – ANYthing. So when things get gray…when things become too hard or don't work or need tweaking – we…I….feel like a failure. I feel like I am simply not being successful. What we have to remind ourselves is that success is simply being on the journey. WHATEVER that course may be. Listening to our bodies and doing what's right in the moment we are in. Sjogrens, Lupus, RA, AS, MS…whatever it may be for us….thrives on stress. Not listening to what our bodies tell is is a sure invitation to stress and that means flare. Period.
I have been on the AIP for 6 weeks now. Following it to the nth degree. No cheating, eating exactly what is on the diet with added enzymes, probiotics, various vitamins and a big dose of cod liver oil. During this time I have tapered my prednisone down to 3mg, weened down to less than half of what I was taking of my tramadol, lowered my gabapentin by 900 mng and have completely gotten off of any tylenol or ibuprofen. I am no longer getting infusions nor am I taking methotrexate. I am taking 3000 mg of Celcept and my usual Hydroxychloroquine. This is a major deal for me. In four years I have never been down to this point. I have NEVER been off prednisone. Why am I telling you all of this? Because I am now at the very point of your last paragraph. My body is hurting, most likely due to too few calories (hum, wonder if that causes stress) and needing to plateau for a while. But this all or nothing girl feels like anything but what the plan calls for is somehow not being successful. I KNOW better. Intellectually I KNOW better. But in the depths of my mind I hold a completely different standard for myself. Black and white! This business of living the best possible life is an art, not a science. And it takes an immense amount of self compassion to do it right. Do we have to be perfect? Nope. Not at all.
It's good to give ourselves a break. It's good to not fight SO hard and to just listen. It's all part of the deal. It's all part of taking care of the whole person that we so beautifully are.
Thanks for sharing your struggle. It's nice to know I'm in such good company! 😉
Peace to you! Theresa
Congrats on your new baby boy, that is very exciting! And I hope that you are able to hold off as long as possible!
Thank you, I feel like I am in good company as well! I am glad you initially had some great results with the AIP plan. I did AIP and when it came to a point that it was all or nothing with that and I thought I couldn't sustain it, I switched to regular Paleo. I figured it was better than going all the back.
Here's to us listening to our bodies! Much love my friend.
I have asthma (I'm very grateful that that's all I have) but I'm going back on a so-called "short" course (which ends up being 14 days with the taper included) for the third time in a year and I feel like I failed and am feeling very little hope. Thank you all for being so honest and eloquent. The all-or-nothing thing hit home for me, as did the idea of not constantly fighting it so hard. That helped me a lot tonight.