Behcet's Syndrome Society
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What constitutes a visit to the rheumy for a flare?

My rheumatologist wants me to come in when I'm feeling bad and if I have any rashes or new symptoms. I'm undiagnosed still, so he wants to see what is going on to try to get to the bottom of this.

The thing is, I always feel awful!! So how bad do I need to be before I go in for a same day visit?? I've been trying to wait until I have another mouthful of ulcers, and other "textbook" behcet's symptoms. But so far I've only had a couple ulcers that have gone away over the weekend. I always have skin sores, but since I was on a steroid they have gone down considerably.

But, right now, after getting off the steroid, I feel horrible. I am so stiff I can hardly move, my muscles hurt, my joints hurt, I'm sooooo exhausted I can hardly stay awake. But when I go in like this, there's nothing really for him to "see" if you know what I mean.

How do I know when I should go in? Sometimes I feel like I don't even know which dr to go to, my PCP, the rheumy, the neuro... I wish I could have them all in one!

10 Replies

Perennial question m'dear! What he wants to see is one of the 'medically approved' signs of BD - ulcers preferably. But having said that, if you're feeling rough and need to see him than I would make an appointment and do so. He needs to know how poorly you feel - if you don't tell him, he won't know exactly what you're going through will he.

And, no, I never, ever take my own advice x


I agree with Di, my Rhemy saw me in May when I had a really bad flare -up and couldnt even open a door! He could see just by the way I was walking into his room that I was in a bad way. I had a booster steroid injection and an up in some meds and within a week was getting much better.

Go and see someone while you feel this bad.




Agreed. Dump's last line that is.

Where are you based Wendy? Sounds like a trip to a Centre of Excellence would suit you as you would see more than one Specialist and they probably wouldn't have to 'see' symptoms, although that would make it easier - they can usually diagnose on history if well documented.

However, as D says, if you are feeling that poorly you should see him, you need something to ease your symptoms, confirmed diagnosis or not, and there are generic auto immune disease treatments.


Also agree with Angela but was composing my post at the same time so hadn't read that one!


Hi everyone

This is probably going to sound a bit dumb but how do you tell the difference between acute vasculitis (which I think I might have at the moment) and a flare needing a rheumatologist?

I'm hobbling around at the moment - much the same as Angela can hardly open a door, but not sure if is my joints or blood vessels - everything hurts!



Hello all,

I think if your life is really grim because of pain which is not being controlled, then that is the time to see someone. Have you ever thought of asking the rheumy for a referral to a pain cliinic?

It may be that you need more than over the counter pain drugs. You could ask your GP if it might be possible for you to have trans-dermal pain control (Fentanyl) if you have to wait a long time for the hospital appointment.

Hope things get sorted for you soon.

Suzanne x


Thank you for all the advice. I will probably end up calling today. I have two mouth ulcers and was up all night with chest pain, probably another bout of costochondritis. I'm in the US so no centre of excellence here, unfortunately.

The vasculitis question is a good one. I noticed that my raynauds in my feet was so much better when I was on the steroids. Now it's back to being bad again. Makes me wonder if it has anything to do with vascular inflammation.


Hi i was exactlu like u at the beginning of the week and all last week it hurt to even lift a spoon to my mouth. I went and saw the prof one weds and they gave me a steroid inj as a booster. It didnt kik in till yest afternoon but its taken the edge off pain wise and i have some movement back. Iv been resting as much as poss tho so iv not really pushed myself but i still hv constant pain in joints limbs/bones with swelling but its defo easier to cope with.

Get yourself to ur rhuemy! They wont leave u that sore over christmas, get the booster injection. Xx


Ok, they weren't open today. So I'll be calling on Monday. Taking pictures of the weekend if need be!!!

Strange thing happened today. Chest was hurting, and my neck hurt, my face got all hot and my nose was hurting. I got a bit dizzy and just felt downright awful. Rested a bit, checked my blood pressure (which was ok), and within 2 hours, I can tell I have new ulcers forming in my mouth. Very odd. But I guess if it is the vasculitis connection, then maybe I was just having a lot of inflammation with the ulcer formation??? Either way, I have a lot of symptoms to bring to the rheumy on Monday!

Now, if I can just make it through hubby's family christmas party on Sunday.....

Thank you all for being here for me to bounce this off of. :)


Bounce away, darling, bounce away :-)


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