Need a med recommendation, please!
Well I think I'm going to need to come up with a new medication option for this disease. Here is why...
I've been taking vicodin for the pain for almost a year now, three times a day as needed. I can't take NSAID's b/c I have stomach issues post gastric bypass surgery. I can't take steroids b/c I'm diabetic and they mess up my blood sugar really badly. So I started with tramadol a few years ago, it stopped helping, then went to darvocet, stopped working and then vicodin, which works. But I understand the hesitation to keep a patient on vicodin b/c of the level of drug that it is. We tried Plaquenil last year around this time but after a few months I developed an allergic reaction to it, big hives, it was rough, spent a few trips to the ED to get shots of meds to bring down the reaction. Erythema multiforme is the name of the reaction I had. YUCK!
So then she put me on vicodin and it was fine. Well I see her routinely (her being my rheumy) and she was goign to wait to try any other meds b/c we found a thyroid issue and she felt that it may have something to do with my fatigue and issues so now I'm being treated for thyroid disease (Graves Disease). I called to reschedule my appointment for September to one week later b/c of scheduling issues I had and they didn't have any openings so they said the next available is in October. I siad ok well I'll take it thats fine. That was about 2-3 weeks ago. So last week I go to call in my prescription refill request, as I always do, through their automated line. I call about 4-5 days in advance to give them plenty of time. So I called on Tuesday, and normally they respond the next day after appointments (around 4 or 5 pm). They didn't call me back Tuesday or Wednesday, so thursday I called and left another message. No call back Thursday or Friday. So Monday I called back and left a voice mail asking if I everything was ok and if not, if they could just call me and let me know. So yesterday I called from work and nobody would even answer the phone during business hours, kept getting voicemail. So I called a few more times til I finally got someone and said I've been leaving messages since last week and I just want to make sure that all is ok or is the office closed? They said no we are open, just leave a message on the nurse line. I said ok, I did that a few times already but I will do it again. Thanks. So I did. This time my message was - I've called a few times and hadn't heard anything back, just wanted to see if there was anything wrong, if you can call me back and let me know if there is a problem, or if you need more information.
So I get a call back an hour or so later saying the doctor wants to see me first, they have an opening on Monday (21st) and they can refill enough to last me until then. I said thats fine I'm off monday and I'll be happy to come in.
So now I'm afraid...are they going to go off on me b/c I called for a week? I mean what else do you do? I am open to trying new meds if she is afraid to keep me on vicodin for a year, so thats fine but how is it my fault that I've called for a week with no response, i was afraid that I'd be left in the dust with no medication options and nobody was communicating with me. If they wanted to see me so badly, how come they didn't have an opening a few weeks ago when I called but now all of a sudden they do. And why not just say ok, we don't want to keep you on that med but we'll call in this or something else?
I just feel like I'm going to get "in trouble" for calling or they are going to think I'm drug seeking. I'm not - I don't care if they put me on something new or different, but what I want is to be told whats going on, not left for a week with no contact, kwim?
So...all of that to say - what medication options do you guys recommend?
My symptoms are - very bad joint pain, aches and stiffness. They are swollen and puffy most of the time, extreme fatigue even though my thyroid levels are now back to normal, positive ANA, bruising, insomnia but then fatigue, numbness and tingling in my fingers, but the biggest problem, the things that are the worst are the joint pain and the fatigue.
I'm scared to try Methoxtrexate but if it will help then I'll try it. I'm scared only b/c I am a nurse and I work 12 hour shifts, and I need to be able to function - I have to work b/c we need the money and the insurance so its not an option to be home sick b/c my body didn't like the meds.
I'm open to any suggestions you guys may have! I want to be able to come to my appointment and say - I'm ok if you want to change my meds and here are some we could try.
Thanks for reading all of this if you have read this far! I know most people would not understand this, but you guys will!
Mommy to a cute little three year old.
I am a Juvenile Diabetic diagnosed at age 12, Positive ANA, arthritic joint pain, extreme fatigue, cannot take prednisone and am allergic to Plaquenil. Undifferentiated connective tissue disorder, Graves disease and fibromyalgia