Tried 3 medicines with bad reactions. Scared to try yet another.
I am feeling pretty low today. I have been on three different medications for RA since June of this year. I have experienced either debilitating side effects (MTX) or a reaction that makes it so I can't take the medications any more. Cimzia caused a ramp up of nerve issues, Hydroxychloraquine cause erratic heart beats and chest tightness and crazy orthostatic hypo tension. I have a prescription for Orencia waiting for me but I am flat out exhausted and feel too anxious to try another one of these meds. I am not sure where to go from here. I'd like to get the set point device, possibly but it is not available in Utah, where I live, yet. I have often had negative reactions to medications. I tell all my doctors this, but feel like they don't believe me until they see for themselves and even then, I sometimes still get the side eye. As if I am trying to have negative side effects or reactions. I didn't even look at the side effects too much for the last two meds as I wanted to have a positive experience so badly. I am almost considering doing nothing for meds and trying to find alternative treatments. Though I know there aren't many if any, that have large studies to prove they are worth it. But I feel like my body can't take any more of what feels like poison to me. Very discouraged today. I'd love some advice or thoughts. I have been diagnosed with RA and mixed connective tissue disease. I have an underlying issue with neuropathy that might be RA related. I have some mild joint pain in my hands, sometimes feet, hips, knee and elbow. But joint pain has not been my biggest issue. That would be extreme fatigue and headaches and some pleurisy. I have PVC and one other arrhythmia heart issue that is caused by a congenital issue. I think it is hard because most people experience so much joint pain and maybe these meds feel like a relief. But this is not my experience and I wish there was something that would work to help my symptoms without making me feel so much worse. I need to function first and foremost. Thanks much.
Hi,
.
I can't offer you any advice, but I will say that YOU get to decide what treatment path you choose. Medications come with risks and going off medications comes with risks. And only you can decide which option is the right one for you. That said, it's a daunting situation you find yourself in. Trying to gear yourself up for YET another medication after experiencing many medication failures is pretty freaking hard. And, having doctors constantly doubt you and question you is exhausting. No wonder you are feeling low. That's a LOT to have been dealing with for years! I thought you might find this article on medication side effects relatable -- https://rheumatoidarthritis.net/living/infusion-side-effect-concerns. And here is one of our former health leader's take on switching meds -- https://rheumatoidarthritis.net/living/when-the-meds-work. There are natural options that may help with some RA symptoms, but they are no guarantee that they will keep the inflammation and joint damage at bay. Here's some information on natural treatments (think vitamins and minerals) that have some research data to back up their supposed helpfulness and you may find the information useful; though, of course, please check with your doctors before trying ANY new treatment, natural or otherwise -- https://rheumatoidarthritis.net/natural-remedies. I do hope you get helpful feedback from other community members, as I know you are not alone in how you are feeling.
Whatever you decide, I do hope you feel at peace with the decision.
Best, Erin, Team Member.
Erin,
Thank you for your thoughts and support. It is a lot to process. I'm taking a small break of 2 weeks to think about this and hopefully recover from the nerve issues that this last one has caused. Hoping by then I will be in a better state of body and mind to figure out how to move forward.
Will read through the articles you sent. I really appreciate it.
JenHello Jen, I'm sorry to hear about you feeling down. It is a difficult condition to deal with. I hope you are under the care of a Rheumatologist. Have you tried Humira? I've been on Biologics since 2012, with a few flare ups, but nothing serious. With insurance you can get Humira in the US for almost nothing because it is so expensive there. I hope you're feeling better. Neal
