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Family and friend opinions

  • By Savedbygrace

    I am very newly diagnosed with RA, as in earlier this week new. I am still trying to deal with the initial emotions of my diagnosis and what it means and treatment options. The issue im having is the opinions from my family and friends. A few of my family members do not want me to take the methotrexate prescribed by my rheumatologist. To be honest, at first I didn’t either after I researched it. However, im leaning more toward at least trying it. I have one friend who knew someone that took it and had bad side effects and another family member that also has RA and isn’t being treated for it because they can just, their words, “push through the pain and their not being treated for just arthritis”. Then I was told by someone “go ahead and take it and when your even more tired and your hair starts falling out, maybe you’ll stop then.” I was shocked. I need this to be my decision. There can be side effects with any medication and I understand that. But I also know that It’s not an option not to treat my RA. I can’t just ignore it. How do you all cope with people’s misunderstanding and judgements? I’ve only been dealing with this a few days and it’s already majorly stressing me out!

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  • By ktinflorida

    I’m sorry you are going through this. I got a little push back from my mom when I was diagnosed, but she knows I’m going to do what is best for me. I have been told everything from ‘food and herbs can treat anything’ to ‘big pharma can cure cancer but they make more money by not curing it.’ I just have to dismiss those people. I believe diet matters, but legal pharmaceuticals are an integral part of my treatment plan.
    I take methotrexate (MTX) and have for about 5 years. There are risks with this med. There are risks with aspirin. There are risks when you get in a car or cross a street. I chose to take this med because I was in a tremendous amount of pain and was barely functional. I was on Imuran but it had started to impact my liver, so I had to get off of it. I was on opiates for pain and could barely get up from a seated position by myself. It was all I could do to shower and dress myself. MTX changed that for me. I was more functional, but still on some narcotics. My doctor added Xeljanz and now I am off the narcotics. My hands do not look like I have RA or Lupus.
    RA is a progressive disease. Once damage has been done to your body, it can’t be undone. I decided that I wanted to fight it aggressively so that I can be independent for as long as possible. For me, I feel like I have made the right decision. Things can pop up later and I can always change my mind.
    The side effects of MTX for me were not that bad. I did not lose my hair. I did have horrible nausea when I started MTX. The reason being I was taking it orally at 25mg. The doctor switched me to an injectable version and I am only a little nauseous the next day. I plan for it in my schedule. I’m also very tired that day, so I do nothing. The doctor wrote a script for an anti-nausea med that I take occasionally, but I usually try to treat it with ginger. My next biggest issue was oral lesions. My doctor treats those with Folic Acid. I do 1mg every day, but have found that 5mg the day before my shot, the day of my shot and the day after my shot has all but eradicated that problem.
    I know it can be difficult to stand up to someone who feels they can tell you how to live your life. Just remember it is your life. You will have to live with the consequences of those decisions, not them. Maybe let them know you respect their opinion and how it relates to them, but ask that they extend you the same courtesy. Sometimes they will surprise you and do just that.
    If you decide to take the MTX and they won’t respect your decision, you may have to go with Plan B…. agree to disagree.
    Good luck with your decision. If you have any questions about MTX, just let me know.
    KT

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  • By Savedbygrace

    Thank you very much ktinflorida! I appreciate you taking the time to respond to my post and your positive words were just the encouragement I needed. I have to come to terms with the fact that not everyone will even try to understand RA or what we suffer through every day. I am thankful to have found this support here though and I do have a few family members and coworkers who are being extremely supportive. And you are absolutely right, there are risks with everything. This morning was a wake up call to me as to how much I do need to try the mtx. I had a very hard time getting the lid off my deodorant, I couldn’t lean over the put my shoes on without pain, I had severe pains in my hands while driving and it’s hard for me to grasp things with my hands. I’m thinking I’m having a flare up. I’m ready to try the meds!

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  • By wannabe-healthy

    Savedbygrace (so am I), just wanted to say how sorry I am that you have to even consider these strong meds. Knowing so little about RA when I was diagnosed many years ago, I have researched to the point I feel confident when I discuss RA. The doctor first thought I had Lupus, which frightened me because I knew someone with that horrible disease. RA, I’ve found, is just as horrible. I understand having to weigh your choices of meds, but I can humbly say it is a decision you must make. I started right off with Remicaid and Methotrexate. I learned quickly that the disease can be destructive fast, even though I was not that bad at the beginning. It’s so different with each person. Mine did not become really bad for about 4 years. Trust me though, it still was uncomfortable. The rheumatologist got my attention early on when he told me one day I might not be able to get out of bed, saying it could affect anyone with the disease that quickly. All I knew was I wanted whatever treatment available. I stayed on those 2 meds about a year, and then had to stop them. My liver enzymes went too high because of the methotrexate, and the remicaid infusions kept my immune system so low, I stayed sick with infections. The doctor put me on another biologic, but I can’t remember which one. I also stayed sick with infections, so I had to go off that. There was a time I was on no RA medication, and I am sorry for that time. RA did awful damage to my joints, and I cried with pain daily. I ended up having a PET scan that showed damage in every joint in my body. My doctor was having me come to his office anytime I needed a cortisone shot, which ended up being too often. When I found out that could cause osteoporosis, I decided I must get back on a biologic fast. I ended up on Orencia, and it has been the most consistent biologic I’ve taken. I still do get sick, right now I have a respiratory infection and am taking an antibiotic. Orencia has helped me a lot, but of course the damage done is irreversible.
    I didn’t mean to write so much, but I wanted to emphasise to you the dangers of not taking the meds your doctor has suggested. He or she will do bloodwork regularly, and it will alert them to any problems. When I was not on a biologic, the pain became unbearable, so my doctor put me on morphine. I have since been seeing a pain specialist who has helped me wean off that medicine.
    Listen to your doctors. I have found people, family included, have no idea what it is like to have RA, unless they have it themselves. Even though they do not mean to be hurtful, they certainly can say some things that hurt to the core of your being. Over time I’ve learned to listen to each opinion, but to do what is suggested by the expert, your rheumatologist. I don’t always agree with him, but I take him seriously. I also read reliable information from sites like this one, WEB MD, and only the best clinical sites.
    You ultimately are in charge, as scary as that is, but with careful considerations I’m certain you will make good decisions. I stopped a long time ago listening to people who know nothing about RA, but I only try to educate them on RA. I thank them for being concerned, and if necessary I avoid highly opinionated people who go a bit far.
    It has changed me in a lot of ways, many for the worse and some for the better. I have more empathy and concern for those with all kinds of diseases, and I know all I can do is listen to them. You will grow in character and knowledge, so be good to yourself. Sorry so long, but hope I’ve helped in a small way. I wish you less pain, beautiful days, and a whole lot of love.
    Donna

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  • By Savedbygrace

    Thank you wanna be healthy, I truly appreciate your kind words! I’m so thankful for this group of support that everyone provides here. It’s nice to be able to read everyone’s experiences and advice! I will continue to educate myself on RA and will continue to educate others as they allow, also.

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