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Thread: Need a med recommendation, please!

  1. #1
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    Default 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!
    Amy
    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

  2. #2
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    I don't know, what kind of meds you could try. You need to talk to your doc and don't be intimidated,remember the doc works for you. I have lupus, RA and fibro, I am on plaquenil, and NSAIDS, for of my almost constant joint pain, the NSAIDS help somewhat. But I know, you said that you can't take those, because of stomach issues. I have heard of some new NSAIDS, that are gentler to your stomach, you need to ask your doc. I do also take vicodin, but only maybe once a month, because I am very scared of becoming dependent on them.
    You need to go and talk to him and tell him in how much pain you are.
    I wish you all the best and hope you get some help.

    Debbie

  3. #3
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    Hi Amy..

    Vicodin doesn't treat the disease, masks the our symptoms as you know, eh....and never ridding our body of the inflammation or suppressing the immune system from going into overdrive.

    If anything Vicodin magnifies the fatigue...a sedating drug in the end. Since you been on the drug for so long, you might have to be weaned off of it so you don't have withdrawals...headaches, nausea and etc.

    If you can rid the body of the inflammation, then the fatigue starts to subside...

    I would opt for MTX. I recently started it after an allergic reaction to Imuran...

    They could start you on a gradual dose. I am starting with 7.5mg with 1G of Folic acid..

    How is your sleep...little, restless or none...it is a big factor in how our joints feel. Sleeplessness magnifies the pain and fatigue too...

    You didn't mention any others drugs...they could be increasing the fatigue.

    While in the DR's office you should question their service and not worry about the drug issue. Ask, I would like to know why it took five calls for anyone to return my calls. Maybe the doctor isn't aware of how his nurse handles his patients.

    And if he brings up the Vicodin being an issue, interject and say yes, I have been wanting to speak with you regarding this..I would like to find a different drug regime to control my systems as this is only masking my symptoms. I would like to treat the disease with MTX and folic acid ( or whatever you decide)....and leave it at that. I would also ask about stopping the Vicodin completely, how you should go about it...cold turkey or weaning to a lesser drug...or until the new drugs like MTX kicks in...

    Let us know how it goes...hugs.
    love,
    Oluwa
    I have Lupus. So *^#@! what.

  4. #4
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    Thank you so much for the responses! That is greatly appreciated! I will discuss Mtx with her. I'm scared b/c of the fear of feeling horrid but maybe if we start low and plan it out, i.e. ask my employer to allow me to be off those two days (M day and day after since I've heard those are the worst side effect days).

    I will also ask her about weaning, I have gone days without taking the vicodin, at some points even 2 weeks, so I'm don't know if I would experience any withdrawls or not but will ask her about it when we talk. I want her to be clear that I'm ok with changing meds, I'm fine with starting something new and yes as you noted, I'd really like to treat the problem, (i.e. inflammation and such).

    Wish me luck! I'm so scared that they will intimidate me and make me cry! Ugh. I was in tears my first appointment with them, b/c I got there and had no referral, my doc office had said they sent one and the rheumy office said no its not here you have to reschedule, their appointments are months in advance and I had taken off that day, gotten daycare and traveled (its about 45 mins away) and they let me wait and come back after I called my doctor as soon as possible and asked them to resubmit the referral.

    anywho, I really like the doctor I just don't like that it took me so long to reach them and then I feel like I'm the bad guy for pestering them.
    Amy
    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

  5. #5
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    Morning Amy...hugs

    How do you handle other bad service you've received out there in the community? Maybe use that approach..Be direct, honest and sincere.

    I wouldn't feel bad that I called him 5 times or more...me, I would be upset at the fact that I had too. Any doctor should understand that...

    I think you are worrying and presuming about things that you shouldn't be. We can like the doctor but not how they run a 'business' because that is all it really is, a business. I think you should make him aware of that.

    Regardless of the drug, I am sure it would have happened if you called in for a prescription for Protonix. I don't think it was the type of drug, that is why they didn't call...I think the nurse was incompetent and after reviewing your record...by coincidence you need to be evaluate, reexamine because you are on Vicodin...

    I was just telling another member when I go to the doctors and they seem unresponsive I don't feel like they are thinking I am a hypochondriac, not believing me or receiving proper treatment or diagnoses. I think of them as incompetent when I get the stare, questions unanswered or left hanging, alone. With that maybe instead of feeling bad, feel you received wrong service..sometimes when we are not well our perception, reception.. because we feel vulnerable can be off a bit...

    Regarding the MTX....After the first dose..I got a headache, a bit of nausea and orange pee...nothing that was incapacitating. I had been on the Imuran for 6 weeks before changing...though I was having serious side effects, when I stopped I did notice a difference in my pain and fatigue. But for me it was a miserable drug. I am happy to be on the MTX..I am elated, so happy to know help is on its way...

    With the MTX, I am eating small amounts through out the day to prevent stomach issues as I have GERD. I opted for the pills, as I simply wasn't in the mood to do an injection. I am not afraid of them..to me it felt too dismal.

    To ease through the nausea...I eat 6 ounces of yogurt or drink a protein drink...later a half banana....later...a half bagel with a few sips of milk...stuff like that...

    A few other members are on the pill form and have no side dishes..effects...

    I find we cry at our appointments because we feel so vulnerable because we are ill. For me, Lortab aka Vicodin magnifies my sensitivity. And if you do cry...just say having this pain, the unknown makes me sensitive on the inside. I just want to be well. Just take deep breaths, hold and breathe out slowly through your nose while waiting in the room and say I can do this, I can be strong...stand up for yourself like you would for your three year old...

    Sometimes if we can bring a friend, family member it helps to boost our confidence...

    Be strong, be firm..be sincere...and you'll do fine..

    Head hugs..
    Love,
    Oluwa
    I have Lupus. So *^#@! what.

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