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I’ve posted in the past about my ANA being elevated and my joint pain and my doctor lack of wanting to send me on. I gained a second and third opinion from other local doctors. Got a rheumatologist who said basically wait and see as other tests did not line up with a definite diagnosis. I had a guess diagnosis based on symptoms only but I am gaining more symptoms now and my rheumatologist left and now they want an another referral from my doctor, who is also playing the waiting game again. How do I just call a rheumatologist and go completely around this bullshit because I’m sick of it? Advocating for myself is just getting me looks of crazy so I’m trying to figure out another route that can just get answers. I don’t want drugs, I want answers. I went from elevated ANA and joint pain and feeling just crappy but no other elevated or lower bloodwork to now I rash across my face if in the sun. It is even on both cheeks and across my nose. My doctor will not refer again unless it happens consistently for another year. When I called the other one I gained other opinions from, they said they would probably do the same. What are my actual options? Last ANA was 1:780 nuclear homogeneous (the first one I had several years ago was speckled).

[This message edited by deena04 at 2:05 PM, Friday, July 12th]

Does your PCP have a NP?
That's highly indicative of lupus. Make sure you take photos of the rash. Document how long it takes to fade.
Maybe try a different Rheumatologist since the first was not proactive. Some are just plain awful. A good one can change your life.
I personally have inflammatory autoimmune seronegative disease which they bounce back and forth between PA & RA. Currently having skin stuff but have been bad about eating gluten which can cause issues for me.
But advocate for yourself and if your PCP or NP won't help you then get a new one that will listen.
I was half convinced I was nuts when this was going untreated. When I found a high quality rheum she changed my life.

Thank you. I don’t believe there is an NP there. I have taken pictures from different angles and uploaded it to my chart in real time because by the time they can get me in, the week has passed and well, nothing there and it’s my imagination, etc..

Please get a new primary. One that will listen that's why I ask about an NP. The difference is nurses are trained to treat the person the MD is trained to treat the condition, if it's not present when you are there then what can they do?
I know it shouldn't be that way but too often it is not.

Got a rheumatologist who said basically wait and see as other tests did not line up with a definite diagnosis.

Was your previous Rheumatologist at least treating your symptoms while they did the 'wait & see' for further development of symptoms?

I have been seeing a Rheumatologist for a few years now with various symptoms and high inflammatory markers. He gave me the diagnosis of UCTD since I am not 'full blown' with any of the autoimmunes but rather and overlap of various ones. BUT he is treating my symptoms. While I am not pain-free; they have my pain levels very manageable compared to before.

The sun is still a mega issue. I go to the beach looking anti-sun sunblock, UV protective canopy, UV protective sun shirt, hat, etc. BUT I would rather do that then not go.

Did your rheumatologist have another dr in their practice that can see you? That might get around the referral? I am frustrated that your regular dr will not do another referral for you. I understand waiting to see if you develop further into an autoimmune disease but they should be treating your current symptoms as well.

My dr explained to me that it was like a 1/3-1/3-1/3 scenario. One-third of folks go into remission, one-third stay at the same place and 1/3 go into full-blown disease.

Thank you. They offer me anti-inflammatories, but I tend to be one of those people that has all of the side effects listed on the sheet they send home with you. I have typically low blood pressure, but the second I’m taking meloxicam, it heavily increases. That’s my problem. The same has happened with a few other meds as well. Yes, they are willing to treat the symptoms, but the joint damage is increasing and I feel like it’s been covered up rather than addressed. I’m trying to go around my current doctor now. My typical blood pressure is 115/70. When on the anti-inflammatories they give me, it goes up to like 140/100. Back to normal without. I don’t know that I’m willing to take that trade off or have to take BP meds, too.

[This message edited by deena04 at 12:29 AM, Wednesday, July 17th]

It is all very frustrating.

Since you do have issues with medications; what would be your ideal results if you did get the referral? Meaning, I think some of the treatments they have done for me (Plaquanil, Methrotrexate, steriods, etc) are the same whether I am at the UCTD stage or if I was full blown Lupus.

I know there are many folks who swear by an anti-inflammatory diet; maybe something along those lines would work for you?

I am on HBP meds and it has risen (but I didn't put the connection with the UCTD meds). That is interesting now that you mentioned it.

I am not sure what the solution is though. Before my treatment for the UCTD; there was many nights of tears on the couch from the sheer pain (or not being able to walk up the steps, etc). Whereas now, I can function (that ebb and flows) and manage the flares.

Agree with EK.
I was started with a steroid trial and gelt awesome within a week. Unfortunately it's not a med you can stay on long term due to the horrific things it does to your body.
Plaquenil, also known as Hydroxychloriquine was highly effective when first got dx. It worked for 3 years. I am now on a JAk Inhibitor and sulfasalazine.
I do recommend the aip diet or doing the whole 30 to see if you can find food triggers. It can make a huge difference in how you feel.
I would also recommend some supplements that can help methylated folic acid, vitamin D, super B, all make a difference in me. And when first diagnosed was floored to find my Vit D was way low. I'm an outdoorsy girl and it was summer.
If meloxicam jumped your BP up ask about trialing different NSAIDS. Diclofenac is an old one and is tolerated much better for some. It also comes as a gel that you can use and has less full body side effects. But it has to be used more than once to see if it helps.