How often do you/did you see your rheumatologist?

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Regular Member

Date Joined Nov 2016
Total Posts : 22
   Posted 3/2/2017 6:24 PM (GMT -6)   
Subject pretty much says it all - how often do you see your rheumatologist? Outside of when you may have a flare.

Especially, how often did you see your rheumatologist when you were first diagosed?

I was diagnosed in october and have only seen a rheumatologist twice. He put me on plaquenil, I went back sicker after 3 months, he just upped my plaquenil and told me to come back in 6 months. Was pretty astonished, but wondering if this is normal. Especially since my primary care doctor and my GI doctor all think my lupus is causing a storm of horrendous intestinal problems I'm experiencing.

I know plaquenil can take several months to kick in. However, I am only getting sicker as time goes on.

Today, thankfully, I did get a new appointment with a new rheumatologist for the 27th smile

OH! sub questions - if you are on methotrexate (sp?) how long before your doctor added that medication in?

Regular Member

Date Joined Jan 2017
Total Posts : 57
   Posted 3/2/2017 7:06 PM (GMT -6)   
I was told by my primary care doctor after she did blood tests that she thought I had lupus. She referred me to a rheumatologist. That appointment took two months before I could see him. I saw him and he ordered 13 blood tests, asked me a bunch of questions.went through my medical records. Did a physical exam. Ordered four ultra sounds. Ten days later after looking at blood tests etc Told me I have lupus. And degenerative arthritis in most of my small joints.Gave me a steroid shot and started me on plaquenil. 200 mg twice a day. I see him again in eight weeks. Hope that helps. Good luck. I was diagnosed on February 15th. Two weeks ago.

Regular Member

Date Joined Jun 2016
Total Posts : 60
   Posted 3/2/2017 9:08 PM (GMT -6)   
Hi, I was diagnosed last July. I've seen my doc about every 2 months since then and I started methotrexate about 4 months ago. When I was first diagnosed he put me on 200 mg of hydroxycloroquine which is generic placquinel (sp?) and then upped it to 400 mg at my next appt since I kept om flaring . Things were getting better but I was still pretty sick so he added the methotrexate at the following appointment and has raised that dose once since then. I haven't had a bad flare in 2 months ! Hopefully things stay that way. Because things have been good I haven't seen him since Dec . I see him this month for labs and to check in. I'm also on a daily dose of 5mg prednisone. I hope you feel better soon!!!

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 3/2/2017 9:12 PM (GMT -6)   
When my Lupus was first diagnosed and we were trying to get it under control I saw the rheumy at least every 2 months. There may have been periods where I saw him more often, but I really don't remember. As things have calmed down I went a long time seeing him every 3 months, now I'm down to every 6 months unless something unusual comes up.

So if you are still in the first steps of getting symptoms managed, you should be seen at least every 2 months. If your rheumy is less attentive than that I would suggest getting a second opinion.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
"Life is far too important to be taken seriously." - Oscar Wilde

Regular Member

Date Joined Nov 2016
Total Posts : 22
   Posted 3/3/2017 3:18 PM (GMT -6)   
Dustmine - I am so sorry to hear about your diagnosis, but like many of us I am sure you are relieved to have some answers! I wish you the best in starting your treatment. My joints are most affected (besides my GI system) and they gave me a steroid shot as well at my first visit. Helped immensely! Thank you for the response

BreRosie - I am so glad to hear methotrexate is working for you! I have been doing a lot of reading on my own, and this is what I want to try. Especially since plaquenil isn't helping the symptoms/control the disease at the moment.

Lynwood - Definitely sounds like I need a new rheumatologist! I have been on plaquenil almost 4 months now and no relief. Going by the old rheumatologist I would be this way until I see I'm again in July. Every time I'm in his office, he informs me I have "white woman lupus" and should be thankful my symptoms are "mild." I AM incredibly thankful that my kidneys, heart, lungs are ok BUT he has not returned any of my other doctors calls to seek treatment options for these horrid GI problems that are progressing. Thank goodness I have another opinion coming up this month! Than you again for the response!

Melissa D.
Regular Member

Date Joined Aug 2008
Total Posts : 451
   Posted 3/5/2017 10:03 AM (GMT -6)   
I think how often you see your rheumatologist depends on how active your disease is and your rheumatologist him/herself. I personally have never gone longer than 3 month follow ups, that said right now I'm going every month because my disease is so active. If you do not feel your doctor is giving you the care and attention you need check into other rheumatologist in your area.

Mrs. Brady
Regular Member

Date Joined Feb 2015
Total Posts : 242
   Posted 3/8/2017 2:11 PM (GMT -6)   
Same schedule as Lynnwood posted. My rheumy says he'll see me in 6 months unless something comes up.
Hoshimoto's Hypothyroidism DX Oct 1997
Pancolitis DX Nov 2013
GERD DX Nov 2013
Lupus, DX Sept 2015
Medications - Synthroid; Hydrocort Enemas (as needed); Prilosec; Iron; Plaquenil; Vit D, Humira
Past Meds: Lialda and Imuran - adverse reactions to both, discontinued

New Member

Date Joined Mar 2017
Total Posts : 5
   Posted 3/26/2017 11:15 PM (GMT -6)   
I typically see the rheumatologist about every 3-4 months. At this point I am see my rheumo more often due to flares, but before that was about the typical time frame. I have heard of people going once every six/nine months, i can not imagine going that far in between.

When first diagnosed (2010), if i remember correctly, it was approximatley every two months for the first year or so until i was well managed.
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