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RA Has Rocked My World

  • By PamelaB10

    Officially received my RA diagnosis in October 2017. Started on Plaquenil and Prednisone. By January my condition had worsened and I will be adding Methotrexate to the mix (I should have already started but was afraid to because the flu is everywhere and I understand it will lower my immune system).

    RA has rocked my world and not in a good way. I have so many questions and concerns.

    All of the medication…It is a lot. It seems the medication can be almost as bad as the disease.
    Methotrexate concerns me the most. Should I expect major side effects from taking it? I’ve heard horror stories and it scares me. Will it make you so sick that you can’t work? Or are we talking, a little nausea?

    I am a single parent and work 40+ hours a week and then there is my full time job at home. How do you get through the day at work when you do good to get out of bed. And the fatigue…I’ve never experienced anything like it.

    My doctor suggested completing FMLA paperwork (I only receive 3 sick days per year and 2 personal) Does anyone know how this works? Could the days be taken when needed? Not all at one time. I been employed in some form or fashions since I was 15…I’m almost 53. I just think I need to learn from the experience of others.

    Would welcome your stories, knowledge, and opinions. Thanks!

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  • By ChelcyD

    Unfortunately, it changes your life. Well, it did mine anyways. I do not know anything about FMLA but I can add my insights into methotrexate. It did not agree with me. But, we are all different. The first time I took it I had my family doctor inject me. It gave me horrible nausea and for the first time in my life I experienced migraines. That was the 3 days then I would be great for 4 until we repeated the process. Needless to say I did switch medications but ended going back on it where I took an anti nausea pill prior to my husband giving me the medication. It was better the second time around but I then develop anxiety over needles which isn’t good when you have to get a shot every week and blood tests every month. I am going to be trying a different medication for the next bit. It does seem like a trial and error process to determine which is best for you and even that changes as the disease progresses. I wish you all the best on your endeavour and I hope you find the right medication for you.

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  • By Erin Rush Moderator

    Hi PamelaB10! First off, apologies for the delayed response to your post!

    I am sorry you are dealing with a diagnosis of RA. It definitely can be a challenge to manage a full life while living with a chronic condition like RA, and being a single parent does make it more challenging, to be sure. I did want to address your questions about FMLA. One of our contributors wrote about it here — https://rheumatoidarthritis.net/living/understanding-the-family-and-medical-leave-act-fmla/. This article should answer your questions fairly well. One big piece of advice that many members have, whether its applying for FMLA or SSDI, is to apply early! It’s better to have all of your ducks in a row before you need them.

    As far as the medications, well, you summed it up pretty well. It’s a lot to take in. While most medications for RA have some pretty serious potential side effects, finding the right one for you can bring a lot of relief from flares and joint damage. Like any treatment, what works for one person may not work as well for you. Some members experience a lot of side effects, while others experience very few. It’s honestly hard to say how you will respond to any particular treatment. And, yes, methotrexate in particular has some pretty scary potential side effects. I know some of our members have had good luck with this medication, while others have not. Here are some thoughts on the pros and cons of methotrexate from one of our contributors — https://rheumatoidarthritis.net/blog/whats-worth-pros-cons-methotrexate/.

    Fatigue is a common complaint in our community. And as anyone with RA knows, we aren’t talking about feeling a little tired or worn out. No. This is a bone weary, mind numbing level of fatigue. And it can be a very tricky symptom to manage. Fatigue can be a side effect of medications used to treat RA (including methotrexate) or just a symptom of RA itself. You can read more about fatigue and potential ways to combat it here — https://rheumatoidarthritis.net/symptoms/fatigue-and-weakness/. Some of our members have been prescribed the drug Provigil to help with fatigue, but many insurance companies will not cover the cost of this medication, as using it to manage fatigue is considered “off label” use. It is mainly prescribed for people dealing with sleep apnea or narcolepsy, hence the “off label” issue when it is prescribed for RA.

    You may want to check out this information on a community for moms with chronic illness — https://rheumatoidarthritis.net/living/mamas-facing-forward-a-community-to-help-mamas-facing-chronic-illnesses-move-forward/. The community there might have some good tips and support for managing being a mom, the breadwinner, and a person with a chronic condition. I also thought you might be able to relate to this article by one of our contributors that happens to be a single mom — https://rheumatoidarthritis.net/living/parenting-amidst-the-pain/.

    Being newly diagnosed can be such an overwhelming time. At the risk of inundating you with information, I wanted to offer one last article that may offer you some hope and practical insight — https://rheumatoidarthritis.net/living/back-to-the-future/.

    It’s ok to feel confused, anxious, overwhelmed, and scared. I dare say it’s pretty normal! I hope this information helps a bit. Don’t hesitate to reach out again if you have further questions or concerns. We are happy to help in any way we can and we are “open” 24/7!

    Best, Erin, RheumatoidArthritis.net Team Member.

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