1. < Autoimmune Diseases

Is it ok to vent a little bit?

Posted by jdnc2023 @jdnc2023, Oct 21, 2023

2 months ago, my rheumatologist prescribed 100mg hydroxychloroquine and 10 mg prednisone, tapered to 5 mg in the second month.

It turns out that he meant for me to take 300 mg hydroxychloroquine, but whoever transmitted to the pharmacy put 1/2 instead of 1 and 1/2. I found this out at my 2 month followup appointment.
My joints have gotten worse over these two months. It's the second time my prescription has been wrong, and also, I had to become a "Karen" when my first follow up appointment was canceled abruptly.
The doctor is very good, but his support staff apparently sucks.
Thanks for letting me vent!

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

adlttl123 | @adlttl123 | Oct 28, 2023
In reply to @becsbuddy "@harley22. @pkh3381 Yes, it can feel really good to vent and complain about the healthcare system...." + (show)
@becsbuddy

@harley22. @pkh3381 Yes, it can feel really good to vent and complain about the healthcare system. Just know that it’s only a fraction of healthcare. But the best thing for you is to do your venting on the discussions in Just Want to Talk discussion group. We want this group to be positive and to focus on helping each other with their autoimmune diseases. We, especially me, need to to feel uplifted every day so we have the right attitude to deal with the problem we have been handed. Does that sound OK with you?

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As a member of this group, I think it is a part of the entire person, to need to talk a bit about something going on in our lives concerning our relationship with our doctors and his staff. It’s very comforting to know that our group can support us every now and again about an issue like this. In my opinion this group is kind loving and supportive.

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buddabu | @buddabu | Nov 4, 2023
In reply to @jdnc2023 "It could be that he doesn't think my situation is that bad since my rheumatoid factor..." + (show)
@jdnc2023

It could be that he doesn't think my situation is that bad since my rheumatoid factor was negative. He had said that I'd have more joint damage if the RF was positive, since this started over 40 years ago.

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Maybe your RA is sero negative? Ask your doctor if that is possible.

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1 reply
jdnc2023 | @jdnc2023 | Nov 4, 2023
In reply to @buddabu "Maybe your RA is sero negative? Ask your doctor if that is possible." + (show)
@buddabu

Maybe your RA is sero negative? Ask your doctor if that is possible.

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Yes, the doctor said it is seronegative. I previously had doctors over 40 years who blew me off due to negative RA factor.

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2 replies
buddabu | @buddabu | Nov 4, 2023
In reply to @jdnc2023 "Yes, the doctor said it is seronegative. I previously had doctors over 40 years who blew..." + (show)
@jdnc2023

Yes, the doctor said it is seronegative. I previously had doctors over 40 years who blew me off due to negative RA factor.

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I understand. I am negative also.

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anniemani | @anniemani | Nov 5, 2023
In reply to @jdnc2023 "I replied to you earlier, but I don't think it shows up I really like this..." + (show)
@jdnc2023

I replied to you earlier, but I don't think it shows up
I really like this doctor and I think it's his support staff who messed up and typed in the wrong prescription in the system. He wasn't very happy with these screw ups, so I hope he addresses it with his staff.

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Yeah. I get it. I had to leave a practice because no matter how good the doctor was, the system in the practice fell apart all the time.

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busyyaya | @busyyaya | Nov 5, 2023
In reply to @jdnc2023 "Yes, the doctor said it is seronegative. I previously had doctors over 40 years who blew..." + (show)
@jdnc2023

Yes, the doctor said it is seronegative. I previously had doctors over 40 years who blew me off due to negative RA factor.

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What does zero negative mean? How did they ultimately diagnose your RA then? I see another Rheumatologist Thursday since my pulmonologist feels1st Dr was wrong. She said the pattern in my lungs suggest RA.

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1 reply
jdnc2023 | @jdnc2023 | Nov 5, 2023
In reply to @busyyaya "What does zero negative mean? How did they ultimately diagnose your RA then? I see another..." + (show)
@busyyaya

What does zero negative mean? How did they ultimately diagnose your RA then? I see another Rheumatologist Thursday since my pulmonologist feels1st Dr was wrong. She said the pattern in my lungs suggest RA.

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I'm trying to paste a link to an article that explains it, but it won't paste.
Google seronegative RA and you'll see lots of articles.
I like your username! My granddaughter calls me YaYa 😊

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farmgrrl57 | @farmgrrl57 | Nov 5, 2023
In reply to @jdnc2023 "Hi, I haven't considered biologics. This is just the beginning of my treatment. I was only..." + (show)
@jdnc2023

Hi, I haven't considered biologics. This is just the beginning of my treatment. I was only diagnosed officially in September, after being blown off by doctors for over 40 years. It's kind of confusing, because the bulk of the hand joint damage and pain is now in the DIP joints and is erosive osteoarthritis. The PIP joints are collapsing, and the doc said that's rheumatoid. Not much can be done for the erosive arthritis. My feet have rheumatoid and my spine has osteoarthritis.
I'm allergic to NSAIDs and I have been trying Boron. I'm used to the pain, but I'm not looking forward to being unable to use my hands when all the fingers are twisted and pointing upward.
Maybe the doc will mention biologics if the hydroxychloroquine doesn't work.

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Please, make it a point to ask your Dr. about a biologic. It can't hurt to ask! Good Drs. won't mind, and if you wait for him to mention it, you might be waiting a while for no good reason. If there's a reason he didn't start you on one, he can explain. No harm, no foul.

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2 replies
jdnc2023 | @jdnc2023 | Nov 6, 2023
In reply to @farmgrrl57 "Please, make it a point to ask your Dr. about a biologic. It can't hurt to..." + (show)
@farmgrrl57

Please, make it a point to ask your Dr. about a biologic. It can't hurt to ask! Good Drs. won't mind, and if you wait for him to mention it, you might be waiting a while for no good reason. If there's a reason he didn't start you on one, he can explain. No harm, no foul.

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I will ask when I go back in January. It's still a bit early to see if the hydroxychloroquine will do anything, especially since I was given 1/3 the prescribed dose for 2 months 🙄

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richardab | @richardab | Nov 6, 2023

Yes, vent away. You are ill with something which there is no cure for, just remedial actions to reduce negative effects. The medical systems are overloaded since Covid. It takes what seems like forever to get appointments. Some doctors are entirely too paternalistic. Some support staffs are not well trained. All I can say is don't be afraid to communicate with your doctor and find another if needs and questions are not being answered.

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