LUPUS UK
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Should I ask for second opinion?

I am looking for some advice please....

I was diagnosed with rheumatoid arthritis 4 years ago and have recently been diagnosed with autoimmune hepatitis and primary biliary cholangitis all of which being autoimmune diseases

I have a symmetrical circular rash on both sides of my neck, my chest and the back of my hands which after biopsy came back negative even though they are considerably worse in sunlight I also have hard circular itchy lumps/lesions on the palms of my hands with discolouration which I always assumed was ra but last time I saw my rheumatologist he said he didn’t think so but didn’t really have time to discuss them!

My latest bloods showed positive asma negative ana but very positive anti-ro I have a lot of symptoms listed as lupus however I appreciate these are also often related to the symptoms of the other already diagnosed diseases too

The question is do you think it’s worth seeking a second opinion re lupus as with everything else I have going on atm I don’t want to risk anything else going undiagnosed?

Very confused

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Hi Melow

Sorry to read your having a tough time with symptoms and lots of AI Diseases!. As your getting pre- dominantly skin problems and have interesting antibody results . It might be worth seeking another opinion from a dermatologist who can diagnose lupus too and treat it. It's a known fact that once we have one auto- immune illness it's easy to collect others like you have and I have too!. Hope that's helpful and best of luckx

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Thanks I just feel like I’m getting more questions with each answer atm x

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You must do Melow as you have so much going on with the more rarer AI diseaes!. I'm glad though you've been started on treatment which can be the same for many of these illnesses because in essence it's the immune system that needs calming down!. Another thought is that your liver and biliary illnesses as a sideline might cause skin problems!. I've also got colitis which can cause eye and skin inflammation which you wouldn't think could also occur with a bowel illness!. You must feel very confused and a bit overwhelmed with it all and I've probably added to it. Do you have a good , supportive Gp that you could go and talk to ?. This might help you decide what's best to do.

If you do decide to go for a Dermy referral then a good idea is to take some photos of your rashes. Also to be able to show your GP too and see what he says!. Best of luck with whatever you do. Keep us postedX

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I’ve taken photos at various stages because of our extreme weather lately it is very confusing and I certainly don’t want to add another ai illness to the mix if I don’t have to but I want to know for certain so I can draw a line and move on

I don’t know when I’m going to get to see rheumy but I have asked for a dermy referral so fingers crossed that comes through soon 🤞🏻

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Hi melcw

I do understand how you feel melcw as I too may be adding another AID which I don't want to do but if it's the only way to be better we have to come to terms with it don't we?. Despite everything you sound very positive!.

Good luck with the Dermy , hope you don't wait too long and great you have photos. Let us know how you get on. X

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Hello Melcw,

That sounds a difficult set of symptoms, results and diagnoses for you to navigate. Possibly it goes with the Autoimmune Diseases territory, as Misty14 says, where once you have one, you begin to collect more... I also agree with Misty14 about trying to see a Dermatologist. They really do understand auto-immunity. With your anti-Ro+ (I am also anti-Ro+), a dermatologist would have insight into this.

Anti-Ro can be present in Sjogrens, Lupus and on its own, where, in particular, it can cause issues with UV rays of all kinds. I became extremely sun sensitive suddenly last summer with rashes happening sometimes due to sun, sometimes not. There is a lot of mystery around much of this and it might be why your Rheumatologist was not so forthcoming in that area. S/he possibly doesn't know why. But pertinently, the autoimmunity targeting your liver is firmly in your Rheumy's hands, I presume?

Can I just ask if you are prescribed any immunosuppressants for the diagnoses that you do have? If so, it's possible that it doesn't really matter if you have Lupus as the treatment could be much the same. I can't say about the liver issues, however, I would suspect that means they will be closely monitoring your organs, which is the tearaway aspect of Lupus that doctors are most concerned about. Many of our other symptoms are not necessarily life-threatening. i.e. skin issues, Raynaud's, joint pain. So if you have a life-threatening part to your diagnosis, and it's early on in your consultations, I'm speculating that your Rheumy will focus mostly there to begin. And get to the other things if they are persistent. It's also the hope with the immunosuppressants that some of the other symptoms will settle. In my case some of them definitely have.

Wishing you all the best.

Panda x

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I’ve been started on Aza pred Adcal d3 and urso about a fortnight ago by hepatologist but still waiting for rheumy to decide what to do for ra as took me off all meds when started to investigate liver

The thing with the rash is it’s always there but gets worse in sun and when not on any immunosuppressants?? Confused.com

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You sound like you have a hefty combination of Auto-immunity going on. Since they had to get you off immunosuppressants to investigate things, seems like you might be in the waiting game time right now. It's not a fun time, while you continue to collect symptoms and some get worse.

The anti-Ro+ is a pretty clear marker for sun issues. So it seems to fit what you're going through. Hopefully your next Rheum appt is not too far into the future, where you can bring this up. Otherwise, you might have to wait it out and keep yourself out of the sun as much as possible. This will get dealt with again in time. But if you're Rheumy appt is many months away, do ask for a Dermatology referral. Also, don't expect your GP to know anything about this. They really don't. They will just treat rashes with creams and suggestions. The systemic part of rashes and sun sensitivity needs to be in the hands of a consultant so they can best treat you correctly.

All best, Panda x

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Thanks panda I appreciate the advice x

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The best thing to do is talk to your doctor about his understanding if the positive anti Ro. He may say that is not uncommon in RA or that you have RA with some lupus features. i do not hear it as being underdiagnosed at all. Rheumatologists know these illnesses change. That was maybe why he repeated the lupus panel.

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