I have been taking my new medication for nearly 2 weeks so a couple of days ago I bumped from 500mg to 1000mg which is the plan to keep me at unless I find I need to increase again. I have had no ill effects from the new medication in a few months I can start to try and back off of some other medications. The new medication I’m taking is Cellcept which is designed to help kidney transplant patients accept the new kidney easier but I guess is there is also research to show it can change the course of Lupus and MCTD. There are a lot of unknowns but I’m willing to try if it means taking care of the disease and not just fixing the symptoms which I have been doing for 13 years. It is an immune suppressant so it means that my once super human immune system is even more compromised and I can pick up every common cold or flu bug like everyone else now. For 13 years I didn’t worry about getting sick because my immune system was on overdrive. The problem with an overdrive immune system is that it doesn’t know when to quiet down again and therefore I would end up in flare. Today I’m at 278 days without a flare and if I do flare I will need to stop taking Cellcept until it is over and then I can start again. Also, I understand that if I do get sick I will need to stop taking the Cellcept until I’m better which means I will likely flare but I will cross that bridge when I get there. The hope is that I can change the course of the disease and put the flares behind me. I live in a world now of when will I flare not if. Going forward it is likely that might change to if I flare which I’m excited to see happen.
Every day I wake up I feel like I’m testing the waters for that day and trying new things. Being flare-up free and doing so much yoga and meditation it is helping me put a new life into perspective. I am looking forward to a new future.
I have been taking my new medication now for 5 days and although I’m 295 days without a flare, I actually think the new medication is making me feel even better. One of the possible side effects is insomnia but I have not experienced that and have been sleeping great. I wake up bright and early feeling refreshed and head right down stairs to take me medication. It has to be taken on an empty stomach and I cannot eat for a few hours so this way I get into my body and it absorbs while I’m working out, getting ready for the day or enjoying a quiet morning with my husband and kitties. I have not felt any dizziness, sickness or other ill side effects. My body seems to be responding well to the medication and in another week I will increase the dosage to the amount in which I’ll stay. We are easing me into in hopes that my body reacts well to it and since I’m still taking prednisone and plaquenil as of right now my body seems to be reacting very well. In a few weeks I can start to back off some of my meds and see what happens. I so look forward to the day when I try to back off of prednisone even if just a little and hopefully no flares. I usually go into flare as soon as I play with the dosage of prednisone so this will be the greatest test of all.
I have another appointment in a few weeks to see what my blood work looks like after using this medication for a couple of weeks. I’m interested in speaking with the doctor again because the last time I was there he re-categorized me as having Lupus but all the research I show doesn’t indicate I have Lupus but still have MCTD. I wonder if my blood work indicated a change or if there is a different reason he uses that term with me. I have always said I don’t care how the doctor’s categorize my disease, I care more about how we manage it but this is stumping me a bit as I have never thought of myself as having Lupus in 13 years and really don’t believe I do so I need some clarification. My family believes he uses that term because, well, there is such a similarity between the 2 diseases and Lupus is easier for insurance, doctors, and patients to comprehend than MCTD. I see them as very different. With Lupus it can affect the skin which I do not have any issues with and also internal organs which my internal organs are functioning very well. I know it is odd to be in the MCTD category for 13 years and there is usually some sort of over-lap or switch to a different more severe autoimmune disease such as Lupus but I don’t believe I’m there.
Research and open communication are key with working with autoimmune diseases and understanding the information we are receiving is so important. I don’t understand the information I have received, my research doesn’t confirm the information I have been given, therefore it is my responsibility to have an opened conversation with my new doctor and get clarification.
As some of you know I have not made any major changes in my medication for 13 years and part of that decision was that the medication I was taking was working, so why change? The other part is that typically medications only have a certain shelf life in which our bodies respond and then the medication just stops working as our bodies adapt so I was fortunate enough that they continued to work. However, all the medication I take is for my symptoms not actually changing my disease. My Rheumy of 13 years retired and I was worried about what this meant for me, my team, and the management of my disease. My team consists of me, my family, my doctor, and my trainer. Together we all have a part to play in the management of MCTD and living with it.
I met my new Rheumy this week and I was pleasantly surprised. My worry was gone the moment he came in and sat down. He was honest, authentic, and saw me with fresh eyes. He gave me a lot to think about as far as my future and what living with MCTD means. Many of us do not stay in the MCTD category and I too am shifting to Lupus with recent blood work that was done. This doesn’t change how I live my life but it changes how I manage my disease. He said to me that perhaps we should try a new drug that would make me feel like less of a patient and perhaps change the course of my disease. I was all ears and took as much information with me I could before I left his office with a new prescription in hand. It didn’t mean I had to fill that prescription, and there was a lot more research I needed to do on my own before that decision could be made.
I filled my husband in and the research began, it is complicated when figuring our sources of information and keeping distance between what I read on line and personal experiences using medications. Not everyone tolerates medications the same and there are some real horror shows with any medication. I’m purposely not going to state the medication in this blog post as I want to give it some time and do some personal research before sharing the name but I will give a frequent update of the findings. So with that said we determined I would start taking this drug. This means that I take this drug and change the course of the disease in hopes of getting off my other medication that treats my symptoms.
I dropped my prescription off and waited to pick it up. I had a consult with the pharmacist since it was my first time taking it and he gave me all the appropriate paper work. I went home and sat down to read. Have you ever noticed how frightening the side effects and warning page can be on the paper work? This was no exception but what I drew from it was this.. I am feel nausea, dizzy, drowsiness, and fatigue. I can live with all that.
Day 1 I am standing at my kitchen counter, it is 4am and I must take this on a empty stomach. I take that first pill and think to myself my life could change right here in this moment with this little pill. I am still taking my other medication while I build this new medication up in my system and after a couple of weeks I can start to play with decreasing medication. I asked the doctor if I could start with prednisone and he said yes please do. This may mean that in a few weeks I can start to back off my prednisone something I haven’t been able to do in 13 years. I had no ill side effects with my first dose and today took my second dose. Again, no ill side effects and I still went to spinning and weight training this morning. I did feel more fatigue yesterday afternoon but is that life and work or is that the new medication? I’ll write my findings as often as I can but for now I feel as though my future is bright and my Lupus/MCTD is on its way out.