Lupus Remission Rates: news link

[EOLHPC]

This just pinged in on my tablet...think you'll be interested:

medpagetoday.com/Rheumatolo...

🍀🌻 coco

[Alison-Brown]

Interesting read Coco.

[EOLHPC in reply to Alison-Brown]

Isn't it. Telling it like it is, I guess. We often have questions posed on here about remission & relapse....well this is sort of a 'legit' response to these questions. Sobering, but I'd rather have this kind of news 'straight'. These statistics don't tempt me to give up hope, they just encourage me to be as conscientious as poss about managing my version of lupus etc.

[Alison-Brown in reply to EOLHPC]

I found it a helpful piece to pass on to my extended family. While my husband and children have been fantastic, the rest of my family, I fear, haven't a clue. I think this will help enlighten them.

[EOLHPC in reply to Alison-Brown]

Good idea! I'll do the same👏👏👏👏

[AnnNY]

The thing about this is they consider a remission what's going on in your blood. I consider a remission to be how I feel. Sometimes the two are not the same in this human body.

[EOLHPC in reply to AnnNY]

Yes, they can't quite get away from that focus on bloods, that's the serology, right?

I liked that the article's focus on levels of therapeutic medication required & symptomatology relative to the BILAG score both ran alongside that focus on bloods. I think I'm going to have to read this article a few more times. And when I have my next BILAG assessment, I'm going to ask about my score

And I'm interest in the article's sighting complement levels - in my case, low complements are considered significant, but inflammatory markers are generally relatively ok...my lupus clinic always volunteers that the low complements are one of my indicators, and that the intensity of my symptoms is what they consider the most important indicator - isn't that what the term 'clinical' is referring to? Ann: I think you've been dealing with this dr speak longer than I have...

[sarahalice]

Thank you for posting the link Barnclown.

For someone who is not in remission as yet (fingers crossed I get there!), the scary part is, out of 532 patients 77 died due to their lupus in one way or another!?!

I hate living with lupus, it traps you! I also hate how people think its just a skin condition, so many in my life don't understand how scared I am and how im feeling.

Hence the importance of this site!

x

[EOLHPC in reply to sarahalice]

👏👍🍀😘

[Purpletop]

Ok - so I have to make it to 9 years after diagnosis and then I can hopefully have a 3-7 year remission. The problem is the first 9 years! I seem to get worse and worse and I'm only in year 3 after diagnosis 😊

I'm seronegative so their measures wouldn't work in my case - however, the way they classify remission is the absence of medication, save for hydroxy. If I ever manage to get off all meds and keep myself on hydroxy only, for at least 3 years without needing to top it off with steroids, or even see the doctor - then that's remission for me, don't need the blood tests to tell me that.

[EOLHPC in reply to Purpletop]

👏👏👏👏👏👏👍👍👍👍👍👍😘

[Penelope-Mary]

very informative reading Barnclown,thankyou. its reassurring to know that there are professionals out there interested in this, as the Americans say 'cruel mystery'.

one day, who knows, we'll be understood. I agree with all your comments regarding wellbeing not always linked to serology readings.

🐕

[EOLHPC in reply to Penelope-Mary]

👍👍👍👍👍👍👍👏👏👏👏👏🐴

[misty14]

Hi Barnclown

Thank you for posting such an informative article. Had wondered what constituted remission. It proves what a difficult illness Lupus is to treat and cope with. I certainly have never had remission like you I guess?. Be as well as possible. X

[EOLHPC in reply to misty14]

Agreed!

Interesting question: I do wonder if I was in remissions some of the time while growing up with my infant onset lupus....yes, I experienced flares & got treatment, but much of the time my symptoms were relatively mild...I was always just quite reactive. And I wasn't on systemic prescription meds except during flares. My impression is that once I hit 30, any tendency towards remission faded away altogether, and the cumulative effects of active inflammatory process began to mount

Happy thanksgiving

XOXO🍀🌻