Medication changes?

MariaHMariaH Member New Member
Hello!
I'm new here and to Lupus as well. I have been very sick for many years and just haven't had the money or insurance to get the testing needed. In 2013 I was diagnosed with Gastroparesis which I thought was my answer the answer I'd been looking for but it was only part of the puzzle and I kept getting sicker and sicker yet I couldn't afford doctors and the couple of times I went to the ER they just brushed me off and told me to go to my primary...couldn't afford one and didn't have one. I went to a doctor my mother in law loved and highly recommended all the time to everyone. I went and she said she couldn't help me. I went again a few more times trying to say hey let's run tests...I even asked to see a dietitian and she wouldn't help me. Or give me the dietitian recommendation. I went in to renew my birth control she refused that too. So I finally went to a new doctor in 2017 I told him everything that had been going on with my health everything and what had happened previously and he said here's what we will do. Ran tests lots of blood tests and an MRI he sent me immediately to a Rheumatologist because it came back Lupus and the MRI sent met to a Neurologist. Each ran more tests the Rheumatologist ran lupus again and again it came back positive so he tested it more to see how bad it is and it came back with no lupus what so ever so he started me on Plaquenil and the Neurologist found a spot in my brain he said was nothing and he started me on Depakote...I went through 3-4 weeks of zombie life-more so than usual- almost certain I would not make it through and then all of the sudden; one morning my body could function and I felt like superwoman I felt great and I could move and all was well in the world I hadn't felt that great in well never....but it was good. I was so happy.
I had another appt with my Rheumatologist and I was so happy telling him that it was making a difference and that I could do things. He told me that the results again came back showing that the Lupus was there but not there but that I was responding to the treatment used for Lupus. (I'm taking that and running with it)
 I went to refill my script soon after and they told me it was the same thing just a different generic. I was cool with that. I was still doing well. Then my refill came again and they said yet again the same thing just a different generic this time too I had more than several bad days it was like living in zombie world again and it slowly got better.

My question is, do they always switch generics like that on Lupus Patients? Also every time they do, do you have to readjust? I mean the prices change every time and it feels like different side effects each time too...well one symptom more amplified than the other vice versa.

Any thoughts or ideas would be helpful...I just want to be better...well as better as a chronically ill person can be. :) 

Maria H.
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Comments

  • JMJM Member New Member
    Well, there is not one test that can let the doctor know whether you have lupus or not. What I'm thinking is that the doctor probably run a test that showed the doctor that you had a positive ANA, but having a positive ANA does not mean that you have Lupus. There's some people who have positive ANA and don't have lupus. 
    Is it doctor diagnosed with lupus could be because you have other abnormal test results and with a symptoms that's probably why the doctor diagnosed with lupus.

    Ask to the doctor changing the medication. I have not had that problem where my medication has been changed from Brand to generic. Talk to your rheumatologist and see if they can only stick to either brand or generic and maybe that will help you.
  • cascas Member New Member
    MariaH said:
    Hello!
    I'm new here and to Lupus as well. I have been very sick for many years and just haven't had the money or insurance to get the testing needed. In 2013 I was diagnosed with Gastroparesis which I thought was my answer the answer I'd been looking for but it was only part of the puzzle and I kept getting sicker and sicker yet I couldn't afford doctors and the couple of times I went to the ER they just brushed me off and told me to go to my primary...couldn't afford one and didn't have one. I went to a doctor my mother in law loved and highly recommended all the time to everyone. I went and she said she couldn't help me. I went again a few more times trying to say hey let's run tests...I even asked to see a dietitian and she wouldn't help me. Or give me the dietitian recommendation. I went in to renew my birth control she refused that too. So I finally went to a new doctor in 2017 I told him everything that had been going on with my health everything and what had happened previously and he said here's what we will do. Ran tests lots of blood tests and an MRI he sent me immediately to a Rheumatologist because it came back Lupus and the MRI sent met to a Neurologist. Each ran more tests the Rheumatologist ran lupus again and again it came back positive so he tested it more to see how bad it is and it came back with no lupus what so ever so he started me on Plaquenil and the Neurologist found a spot in my brain he said was nothing and he started me on Depakote...I went through 3-4 weeks of zombie life-more so than usual- almost certain I would not make it through and then all of the sudden; one morning my body could function and I felt like superwoman I felt great and I could move and all was well in the world I hadn't felt that great in well never....but it was good. I was so happy.
    I had another appt with my Rheumatologist and I was so happy telling him that it was making a difference and that I could do things. He told me that the results again came back showing that the Lupus was there but not there but that I was responding to the treatment used for Lupus. (I'm taking that and running with it)
     I went to refill my script soon after and they told me it was the same thing just a different generic. I was cool with that. I was still doing well. Then my refill came again and they said yet again the same thing just a different generic this time too I had more than several bad days it was like living in zombie world again and it slowly got better.

    My question is, do they always switch generics like that on Lupus Patients? Also every time they do, do you have to readjust? I mean the prices change every time and it feels like different side effects each time too...well one symptom more amplified than the other vice versa.

    Any thoughts or ideas would be helpful...I just want to be better...well as better as a chronically ill person can be. :) 

    Maria H.
    I'm wondering why the doc prescribed plaquinel of it's not lupus? For lupus-like symptom management, instead of finding the real culprit?
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