Lupus Forum - New Rheumy

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Q: New Rheumy

asked by: mia on March 29th, 2004

Experienced User

I'm going to have to complain a little now! It took 3 months to get an appointment with a new rheumy. My old rheumy, who I loved, lost two years of my records! They had my first appointment in '94, and then no appointments until late in '97. Fortunately, I keep my old appointment books and went through them, and lo and behold had about 30 appointment for the next couple of years. And they lost them! I ended up in the hospital 3 times because of lupus and adverse reactions to meds like plaquenil, when I threw-up for 3 months.

Now I show up 30 minutes early to fillout paperwork, sit patiently, have copies of all my records, and copious notes about my symptoms for the last 5 months, and I was kept waiting 1 hour and 45 minutes not counting the 30 minutes !

Worst of all, I felt great that day! I know this sounds like a good thing, but the day before my pain and inflammation was a 9! So, as I described my symptoms of late, I looked perfectly normal. After the doctors examination he, of course, orders blood and urinanalysis, which I no longer had time for because i'm late for work, he annouces that his treatment of choice for lupus is nothing! I was struck dumb. Nothing! I will have my tests done since it would take me another 3 months for a new appointment, but I am so deflated i'm not sure what to do.

Mia

Replies(9)

lupusfibrochick

replied on March 29th, 2004

New User

New Rheumie

Wow, mia! Sounds like a heckuva struggle you are having! Why does it take 3 months to get an appointment with this guy? Either he is a very popular doctor or do you have an hmo? In any case, I totally understand your frustration. Making you wait 1:45? That's pretty rude! And what kind of rheumie thinks a good way to treat lupus is to do nothing? Makes no sense to me and scares me, too!

Plaquenil really helps to keep my lupus in control, but you said it made you throw up for months! That is terrible! I hope they can find something else to give you some relief. Prednisone maybe? I gained a few pounds on it, but it did help. Then I stopped taking it and the weight went away luckily. I hope you can get somewhere with this doctor or find another one. How long have you had lupus? How severe have your symptoms been lately?

Smile

sherri

LadyBrannon

replied on March 31st, 2004

Active User, very eHealthy

Mia:
ugh! That is something else! *hugs*

have you called to try another doctor? I know changing is such a pain (as I am going through it right now too), but i'd be very concerned about a doctor that doesn't keep in mind that lupus patients very often look *normal* even when they are not doing so well.

*warm hugs*
ladybrannon

mia

replied on March 31st, 2004

Experienced User

New Rheumy

First, the new doc needed my old records. ''''''called the old rheumy didn't have old records. Needed research. Took three months to find my records and there were 2 years missing. The two years unfortunately, I was the illest. Now I have to go to the new rheumy, with totally incomplete records. I was in the hospital three times and had adverse reactions to several medications.

Of course, i'm hoping next time I feel completely terrible! Haha!

Mia

leucara

replied on April 1st, 2004

New User

Hmmmm

Mia-

I am sorry to hear that you have problems with plaquinil. After about 6 weeks a got a really itchy rash and I get acid reflex from it but that's about it. Did you get these side effects too? Well, after I went to see my doctor he said that the other anti-malarials will cause the same problems
and that the only thing that is offered other then anti-malarials is steroids.
Have you heard of mirac? It's a supplement. It helped me a lot! Check it out on the internet. It's only for lupus and it's all natural. Read the testimonials.

Shawna

mia

replied on April 2nd, 2004

Experienced User

Hmmmmmmm

I was on plaquenil 8 years ago and threw up for 3 months even though they lowered, and lowered, and lowered the dosage. I have not heard of mirac, what is it? I have had problems with some supplements. Do you know it's biologic origins?

Thanks for the reply,

mia

leucara

replied on April 2nd, 2004

New User

Hmmm

Hi. I cant find my bottle but if you do a internet search with the work mirac it will pop right up. It did help me. A lot of people take it instead of plaquinil. Or they come off of plaquinil and take mirac. I know it is vitamin c plus some kind of extract from pineapple. It claims to block the gene that causes lupus. There is a lot of information there on the website to read. There is so little that is offered to us from doctors and I know most of the anti-malarials act the same. If you cant take one of them then it is unlikely that your body will be able to tolerate the others. Do check it out.

Shawna

clarebear

replied on April 6th, 2004

Experienced User

New Rheummy

I have been known to wait nearly 2 hours to see my doctor. My established doctor. They've created a different system now though that they only schedule one appointment per hour.

She's the only doctor in her office and she was great. I was perturbed at the 2 hour wait but you couldn't have paid me to go to someone else.

Now I have to because I don't live in that city anymore. And with this new doctor, even though it was a "consultation" (more like "tell me your lupus lie story) he was an hour late.

Funny as hell though, the new guy.

I am very lucky to have the doctors that I do. I wish I could spread this good fortune everywhere.

Clarebear

mia

replied on April 7th, 2004

Experienced User

Clarebear

Did you say lupus lie story?

That's exactly how I felt when I finally got in to see my new rheumy. My internest had prescribed about 5 weeks of prednisone, broken up here and there, over a three month period. So by the time I got to see the new doc, it was no wonder that most of my symptoms had gone away. Between the medicine and plenty of rest, I felt fabulous by the time I had my appointment. What a bummer!

Haha

mia

clarebear

replied on April 7th, 2004

Experienced User

Oy Butterfingers!

I meant lupus __life__ story.

Sorry about the confusion!!! This is what I get for not proofreading.

Embarassed

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