Madder than a wet hen at my rheumatologist
I first got diagnosed with RA back in 2017. Started off on methotrexate and Plaquenil and I made it 8 months before I fired the rheumatologist and cut back on the meds until I was out. Fast forward to last year and my wife wanted me to try RA meds again. I told her that I would try and if it doesn't work, it doesn't work. Got in with the new rheumatologist in May of this year. Told the rheumatologist that I'm not going to be a guinea pig to see what meds might work. I was given a prescription for leflunomide and 4 samples of actemra. Made it 6 days on the leflunomide. I started the actemra a week after. After the 2nd shot, the rheumatologist office called me to see how the new prescription is going. I asked, what new prescription? They called in prograf the previous week. It would have been nice if I was made aware about it. Made it 3 days on the prograf. After the 3rd shot of the actemra, the fatigue was too much for me, so I stopped. It's been a little over a week since and I got a text message today from a pharmacy saying the prescription for orencia was being processed. I was thinking that it was a typo with my phone number. I was wrong. I called up the pharmacy to cancel the prescription. This would be the 2nd prescription they called in without my knowledge or input. To say I'm mad would be an understatement. I made my wishes known and calling in prescriptions without my knowledge is just wrong. My next appointment is mid July. I'm just going to get blood work done and fire the rheumatologist. I know I'm ranting, but I'm mad right now
Hi,
! It's okay to rant once in awhile. I know it's hard and frustrating when you feel like medical decisions are being made without your consent or approval. You have every right to choose which treatment option works best for you and if these meds aren't for you, well, that is your right to choose to not take them (of course, just double check before going cold turkey with any medication, just to be safe).
I hope you are feeling okay as the meds work their way out of your system.
Best, Erin, Team Member.May I ask why you did not want blood work done. If by accident the Rheumy is good, he cannot determine what might have worked for you or at least been able to get a better understanding of where your body is regarding Inflammation/RF factor/and status of your kidneys. If you are having surgeries due to degenerative damage to bone/joints, you might just have RA. If it is progressing like you mention, I hope you find a doctor that will help you. May I ask where you live, so this form of great people might have a suggestion. Wish I could help with finding a good doctor for you. Till next time, I wish you well. As for why I didn't want blood work done, beside being a waste of money and most doctors send blood work to that LabCorp instead of doing it in house, I wasn't on the meds long enough to worry about any damages to my liver or kidneys. I already know that I have RA. Got diagnosed in 2017 by another rheumatologist. I fired him after about 5 months. I already know that I have degenerative issues. Had surgery done on my right wrist for degenerative cysts and to clean up the RA damage back in 2020. Didn't do any good because I have degenerative cysts back in the wrist. They showed back up last year and I won't be going through surgery again for it. If I decide to try rheumatoid meds for a 3rd time, I'll find another rheumatologist. But there's a slim to none chance that will happen, and slim left a long time ago.
Have you tried a course of low dose prednisone? That’s the only thing I am on and so far only thing I can take (many reasons). It works for me. Good luck. I had to fire my first rheumatologist but the one I have now is great.
I do have a prednisone regiment for bad flares. 2 pills a day for 5 days for it. I can't remember the dose. My general practitioner Dr put me on it last year. I've only needed it 4 times so far. The last time I was on prednisone was early this year. I have thought about asking him to put me on a low dose regiment. My concern with that is weight gain. Always gain a little weight on it and it takes a while to lose it. I also have tylenol 3s that my Dr prescribed me over summer. Threw my back out on top of a localized flare in my lower back that lasted about 6 weeks. So I have meds that I take during really bad flares. I could take them a lot more often than what I do. I rather just try and tough it out and I don't want to accidentally abuse the tylenol 3. After seeing my mom getting hooked on pain meds for lupus and fibro, just dealing with the pain is a safer option
