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Starting infusions

My doc wants to start me on infusions, but my bloodwork is almost totally normal. Granted I feel like crap, horrible fatigue and I do have inflammation in hands and feet, but I am scared quite frankly, having tried so many pills over the years, methotrexate, Rinvoq, prednisone always made me feel better, now I have stomach troubles that started last time I did prednisone and the rinvoq. Honestly I don't trust doctors anymore they treat me like I'm a head case and I'm paranoid that they might be pushing the infusions as a way to shut me up. I'm ready to stop complaining at all, if I could take Tylenol, I would just take it, it would help. I'm afraid if I say I don't feel comfortable doing infusions ( I already agreed to it, and it got approved), that they will feel I'm uncooperative. I even want to stop testing bloodwork, and take a break from doctors for a couple of years, 20+ years now, SSDI. I feel trapped

  1. Hi . Your reluctance and your fear are both understandable and justified. No one has any way of knowing whether infusions will help you. Everyone reacts differently to these medications so it is a game of trial and error. Ultimately, only you can decide whether this is something you want to go ahead with. One the one hand, it might slow your progress and alleviate some of your current symptoms, giving you a better quality of life now and in the future. On the other hand, it might not. You might see no improvement, and then suffer serious side effects from the medication. Know that if you decide to go ahead with the infusions, you can stop any time. It's not a long-term commitment. I would not try to compare your experiences with methotrexate and prednisone with anything else though. Methotrexate is the first drug doctors prescribe because it is inexpensive and most insurance companies require that you try it first, but it can come with some awful side effects. Prednisone is not intended as a long-term solution and can cause serious problems if it is used long-term. It should be used only to bring symptoms under control. Your experience with Rinvoq would be more comparable, though you should keep in mind that your reaction to each biologic will usually be different. I understand wanting a break from doctors, but keep in mind that a break could cost you your SSDI. If you decided to stop seeing your doctor, you might want to research the impact on your future with SSDI first. You can always tell your doctor that you want to come off medications, but that you want to remain a patient for the sake of yearly evaluations and in case you need alternative/complimentary treatments, such as physical therapy, down the line. I hope this helps and that you are able to reach a decision that leaves you satisfied. Treatment fatigue is super common among people with chronic illnesses. You are not alone. We are here whenever you need us. Best wishes. - Lori (Team Member)

    1. I am crying right now from gratefulness from your thorough and very compassionate answer. I've never had someone sound like they actually heard me and gave such straight forward advice. Especially the "patient fatigue" I've never thought of it that way makes total sense. I had actually called the drs and set up my first infusion yesterday, after thinking for a few days. I'm still scared, but you are right, if it doesn't work, I'm not in chains. And if I get side effects, well, im not exactly living right now anyway. Thankyou SO much. Here I go again.....😀

      1. I am so glad that helped, , and I hope you know that there are lots and lots of people here in this community who are super supportive and willing to help whenever you need support. Please keep me posted if you feel comfortable doing so and reach out whenever you feel overwhelmed. Gentle hugs! - Lori (Team Member)

    2. Hi . On top of the excellent information from , I want to share with you that often infusions do not have the same level of gastrointestinal side effects as oral medications and your doctor may have been considering this in recommending moving to the infusion. I also want to share with this article from our contributor Mariah on her experience with infusions, from the first time concerns to becoming comfortable with it: Of course, as Lori mentioned, everyone's experience may be different. Please know that there are people here who understand and feel free, if you like, to keep us posted on how you are doing. Best, Richard ( Team)

      1. Thankyou very much Richard, I am going to watch it. I really appreciate it. And yes, I think you are right on about my stomach issues being a deciding factor in choosing to go the infusion route. Thanks again. The support over the past few days has been much appreciated 😊

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