I am trying to make the decision to stay or switch my Rheumy. My question to all of you is what role does your Rheumy play in your care. I see mine every 3 months but half the time he does no bloodwork to check anything and when I come to him with memory fog issues or that I have been having headaches or back problems he just pushes me off to my primary care who in turn tells me to talk to my Rheumy. This last visit two weeks ago I had three problems to talk to him about. 1) my right knee has been in so much pain and falling out from under me. 2) I feel on ice this winter at work and when they X-ray my back they were worried because they stated there was some degeneration and spinal narrowing in my back and told me to tell my Rheumy when I see him next 3) I went to my eye dr and they Dx me with chronic dry eye but was worried I had an underlying sjogren’s syndrome and wrote a letter to my Rheumy expressing their concern.
Well on issue 1) he did X-rays which should degeneration of my knee with bone spurs…he gave me a shot in my knee and said there you go that is it. I have been in contact with him regarding still being in pain and he keeps telling me to give it two more weeks. 2) he said people often look at X-rays wrong an it was nothing…I then explained to him that I had seen an Ortho way before they knew I had lupus years earlier and they had done an MRI and told me the same thing about the degeneration and narrowing. He pushes that to the side and said forget about it. 3) he said he could not test for sjogren’s syndrome because it would turn up positive because I have lupus so either way they could not tell to make that Dx.
So my question since this is the very first Rheumy I have had to ever deal with…am I expecting too much and this is the correct way Rheumys work or should I look for a second opinion?
Find a different Rheum. If you have to question your doctor and he can't give you the time of day to actually listen to what you have to say, you need to find someone else. My rheum is amazing. After I see him, he sits me down in his office and go over what the game plan is, any new prescriptions, any concerns/questions, everything. I've never had that with a doctor before and it's wonderful. I feel like my condition truly matters and I trust him with my health. If I call with a question or a side effect of a med or a new symptom, he calls me back that day. Definitely find someone else that you trust and who listens. It makes a HUGE difference.
You should expect a lot of care from ur Rheumy. That is what you see him for- CARE! Seems like he doesn’t have good "bedside " manners either… So please look for another one. Ask for recommendation from ur friends, coworkers …Good Rheumy is very critical to your well-being.
Sounds like he doesn't really understand lupus, which not all Rhuemy's do, believe it or not. Run (just kidding) walk, slowly but quickly to a new Rhuemy. See an ortho about your knee degeneration as any bone replacement or anything like that is going to require an ortho.
I think my various docs have more of my blood than every vampire around. There is no way to determine if your meds are working without bloodwork. NOT good.
Good luck on your search, but start by asking your PCP.
I went through 2 rhuemies before I found one I could click with. Come to find out that the rhuemy I had last year (2012), who replaced my old rhuemy when she retired, wasn't managing my lupus?? Hence, I've been feeling like @#!+% for the last year.
New rhuemy is a replacement, but talks like she really knows her stuff. We'll see. She was also a professor (also has a Phd) at a medical school and taught rheumatology. Time will tell, but I've not been impressed by most of my doctors like this.
Get a new one right away!
P.S. There are a couple antibody tests that are different for Sjogren's. Besides if you have symptoms of Sjogren's you have it.
If I were in your shoes I would definately get a new doctor. Your rheumy should be watching your kidneys and liver for signs of damage or distress! Not to mention like the other person stated,he needs to watchif your meds are even working!
You need to find one that will take the time to listen to all your concerns too. You may be telling them something that’s important for your care.
About the Sjogren’s, there is an antibody test for that. However, the treatment is pretty much the same except they can give you Restasis for your eyes and something for the dry mouth (can’t remember the name).
Healthgrades.com has been helpful in finding good doctors. Read all the patient reviews as this helps to get more insight. When you call for an appointment ask what their specialty is in terms of rheumatic diseases. If lupus isn’t one of them then don’t go. Also try your local lupus chapter. They can be found at lupus.org.
Get another one because my first one did the same thing, now I have one who care and takes times and let me makes some decisions before telling me to go see my PCP. There those who really care find one it will help your stress level
I made the call to my PCP to refer me to another Rheumy. Problem is I live in a rural area and already have to travel for the one I was going to bit I am willing to travel hours if it means that someone will listen and treat me right.
if you are feeling doubt in any way of the care you are receiving then you need to find care somewhere else. their job is to help take care of us and answer what we dont know. Good luck!
I had a great visit with my Rhuemy today. It's the same as the visit before and before. Plaquenil is working so my memory fog is lifting a bit. Benlysta is not an option for me as I am ANA neg so still having the other symptoms as well.
That said I asked her specifically what she would think of a Rhuemy that didn't take labs. She agreed and said there is no way at all to evaluate what is going on with your organs or even if your TX was working.
She specializes in Lupus so I trust here implicitly. If you aren't getting that same level of care or feel as if you are being passed off to someone else because it's inconvenient for them, you absolutely need to find a new one.
I went to a lupus foundation meeting this past weekend and got to hear Dr Susan Manzi speak. She was a major player in getting Benlysta approved. I got a chance to talk to her one on one and she said that she would recommend either MTX or Benlysta because of my joint involvement with my lupus. I am ANA positive but my C3 and C4 levels were norm but like I said that has been almost a year ago that my blood work was done from my Rheumy. I checked online about MTX and found I cannot take that because it works by binding folate and I have severe MTHR mutation and currently I am only absorbing 10% of the massive amount of folate I take a day. So MTX would be out of the question but when I get a new Rheumy I am going to ask about Benlysta!
I agree with all the answers. I am one that waited too long with a terrible PCP and an adequate but not great rheumy. Now I have an internist that is on top of it all. Now we are moving 200 miles away so I get to start over. I have lost years of my life by not getting help so get moving. Someone here said to go to healthgrades.com and that person is right on the money. I no longer ask for referrals from other MD because they stick together. I get my answers from healthgrades and other sites like that. Good luck!
I, too live in a rural area and I drive over 3 hours to see my Rheumy. He is worth the drive. I alternate between seeing him and my internist depending on my issues. When I had to be hospitalized because of a DVT my rheumy spoke extensively with the hospital docs and knowing that they had discussed my case helped me trust new docs. Keep looking - you'll find a good match.
Went through something similar with my first rheumy and looking back on it wasted way too much time with them!!! I have a new one who so far is great. Definitely switch!!! Don’t suffer needlessly. Start researching a new one ASAP because as you all well know getting that first appointment can take months. Small suggestion don’t let the current one know you are switching because no matter what you need one so in the interim until you find a good one at least he can write scripts and order tests. Good luck!!! I feel you frustration!!
I agree with all on this board - it is time to find another Rheumy. You are definitely not expecting too much. Good for you for wanting to take better charge of your care. I am on my second Rheumy (actually, I am in a group and have been seen by three of the Rheumy's, but see one most of the time) and I am very happy with the care I get. The first Rheumy was just awful. Keep trying to find the right doc for you. Best wishes to you, and keep us posted.
I’ve been through about five rheumatologist. I finally got one that I like and I trust. The clinic where I give my Benlysta do not have a clue how to correctly access aport safely.