Active inflammation and lupus

[lunarainbows]

Hi,

I was diagnosed with “mild lupus” nearly 10 years ago, on the basis of antibodies & rashes (and some other signs, forgot what, might have been mouth ulcers).

But the doctor very quickly - within a few months - said I “don’t have active lupus”. This was on the basis of… I don’t know. No organ involvement? And because according to him, I had such bad pain, it couldn’t be lupus & had to be fibromyalgia and Me/cfs.

So basically I just had checkups every year where they kept saying I didn’t have active lupus. And so didn’t get any treatment for inflammation or for any other lupus symptoms (just hydroxychloroquine which is meant to be a general preventative).

Earlier this year, the doctor asked if I had stiffness. And as usual, I said yes. But it was a new registrar who spoke to me, so he said for completeness they might as well do an ultrasound as they’d never done one before. He said they wouldn’t find anything but anyway let’s just do it for the records.

Well, they did do one, just of my hands and fingers.

And it turned out I have active inflammation in both my wrists, and tendonitis (?) & inflammation in my tendons and also my fingers had past inflammation (like maybe from a week ago) and had swelling.

I had just done a short crochet session the day before which had caused pain.

But from the outside my fingers look “normal”, which is why I hadn’t been believed. My pain levels and general stiffness levels haven’t even changed from 10 years ago, so i would’ve thought this inflammation has been there all along since the beginning.

The doctor who did the ultrasound said he’s going to expedite the report & said he thought my meds would be tweaked, and that my appt should be brought forward.

Anyway, i dont know what this means? I have active lupus? And I’ve had it all along?
Or I have another inflammatory condition?
And this is what is causing the severe pain in whatever joints I do any work with?

I do have severe muscle pain as well. And I wonder to what extent that is then caused by an inflammatory condition, because they can cause muscle pain too? But I don’t know if they can actually cause severe muscle pain?

These are just my thoughts as I was so surprised at what had been found. Interested in thoughts of those who know more about autoimmune illness than I do / have read more than I do! And interested if anyone else has inflammatory conditions that have been successfully treated to some extent by medications.

 

[Kitty]

I don't have any first hand knowledge, but an ex-colleague described flares of lupus followed by quieter periods. I wonder if that's the sort of thing they mean by active/not active?

I do have a condition that's been successfully treated with meds (psoriatic arthritis), but it's very different to lupus. It might also be easier to treat.

Most of the irreversible damage was done before they put me on treatment. Since I've been on it, it's been much less severe and I had no side effects until recently. I've just decided to start having a reaction to the drug, so I think they're going to have to put me on methotrexate instead.

Good luck, I hope they find something that helps!

 

[lunarainbows]

I don't have any first hand knowledge, but an ex-colleague described flares of lupus followed by quieter periods. I wonder if that's the sort of thing they mean by active/not active?

I do have a condition that's been successfully treated with meds (psoriatic arthritis), but it's very different to lupus. It might also be easier to treat.

Most of the irreversible damage was done before they put me on treatment. Since I've been on it, it's been much less severe and I had no side effects until recently. I've just decided to start having a reaction to the drug, so I think they're going to have to put me on methotrexate instead.

Good luck, I hope they find something that helps!

Yes, that’s what active vs non active means - but they’ve been saying I have non active lupus since the beginning (which they told me means no inflammation, and no need for further treatment), without really any evidence for that. They’ve never done an ultrasound before, or taken notice of my ongoing symptoms of stiffness & pain. And they would have gone on saying that, even now, if the doctor hadn’t randomly decided to do an ultrasound this year for completeness (And even then, he said before the scan, that he thought nothing would be found!). Which is what I’m very annoyed about!!

I’m glad your condition has been treated successfully, but sorry the meds are starting to cause an issue! I hope you’re able to find the right meds that can help you!

 

[Jonathan Edwards]

Hi @lunarainbows,

I cannot give you advice, as you know, but I can make a few comments.

I was never a lupus specialist but I trained in a unit with one of the biggerst UK lupus clinics so saw quite a lot of lupus years back. I also got involved when I set up the use of rituximab in lupus. Colleagues talk about 'active lupus' but I am not exactly sure what they mean. (I am not sure whether they have such a clear idea other than some tests showing up.) It is common to use the ESR as a sign of 'activity' and it may be that your ESR has been lowish.

Things are a bit complicated for lupus when it comes to inflammation because there are two sorts. Lupus can involve the same sort of inflammation you get in rheumatoid arthritis with a raised ESR and C-reactive protein and lots of white cells in the joint - what is called an 'exudate'. The ESR and CRP reflect the involvement of cytokines like TNF. In this situation joints are usually visibly swollen and it is called 'arthritis'.

The second sort of inflammation in lupus is more subtle and does not involve TNF or a raised CRP. What is confusing is that it is still often associated with a raised ESR for different reasons - red cells may sediment because of high levels of antibodies rather than high levels of fibrinogen (which go with CRP). But it is not necessarily associated with even a raised ESR. The blood vessels leak a little bit of water, salts and sugars but not proteins or cells so what you find is you sample the joint is clear fluid or 'transudate'. Very often the joint is not visibly swollen and so this is often clinically reerred to as lupus 'arthralgia' - pain without swelling. Pain in joints without visible swelling is a very well recognised feature of lupus.

In the last twenty years rheumatologists have started using ultrasound to check for fluid and tissue swelling in joints when it is hard to pick up on simple inspection. How accurate the scans are I don't know but the technology has improved hugely and it is probably now pretty reliable.

I cannot say exactly what the situation is for you. But given the above this would seem to fit in with lupus. I am not sure that whether this is 'active lupus' or not means much. If it is lupus it is lupus giving trouble. That suggests thinking of treating with lupus type drugs but things then get complicated without more detail.

I must say that in the past your posts have suggested to me that you might have lupus - in tht the crises you have described would be more consistent with lupus than ME/CFS, but please do not take that as a valid clinical opinion.

The basic problem with all this is that rheumatologists as a whole don't understand that much immunology, or even much about joints. Some of them do a very good job looking after people with lupus but sometimes I think they might do a much better job if they understood what was going on. When I got involved with lupus the practical clinical work was headed by my deputy Maria Leandro and I have a lot of confidence in her opinion because she studied the immunology and is also a very well read and sensible physician.

That is about all I can usefully say I think.

 

[lunarainbows]

Thank you @Jonathan Edwards, that is really helpful and gives me a much clearer picture.