if my diagnosis & treatment for SLE took years to arrive, is the prior progression of my condition at all reversible?

I'm following on sort of sideways from a ? Uzi41 just asked in the forum blogs section about having flares while diagnosed and on lupus meds

What about when you've had years/decades of flares but hadn't been diagnosed with SLE yet (although you DID have SLE) so you haven't been on the sort of targetted meds that could've taken the edge off your sle generally, and maybe even slow progression down a bit... but instead you were on meds that only treated flare symptoms individually..... Is the progressive SLE damage you inevitably experienced reversible?

I feel that a lot of us have spent years in this situation.....because so many of us have been told by drs that we've had lupus for many years before diagnosis. in my case, i.'m told i was in this situation cause no drs thought to look carefully at my overall medical history or my bloods autoimmune profile: i guess they just treated the bits of my bod that appeared most affected by the current flare (eg prescrip NSAIDs & pain killers for joint & muscle flares, prescrip proton pump inhibitors & antacids for upper GI flares, antibiotics for septicaemia, tendinitis and pleurisy etc etc). And usually these flares would eventually more or less gradually subside to a simmer (partly, i now think, cause I was spending so much time flippin researching how to lifestyle-manage my ridicuolously body-wide symptoms and was pretty conscientious about doing what trial & error taught me helped). I know my lupus must have been relatively mild, cause i only ended up in hospital a few times...but even then, the drs never looked at me closely for an underlying systemic or autoimmune condition....

So, some of us, seems to me anyway, are having to get through loads of flares even with out lupus meds. I guess this could mean we're lucky to manage without the side effect issues lupus meds create......but I do wonder if my SLE would've progressed less by now if I had been diagnosed and treated earlier.....I'll be 60 in oct but feel more like 80 already....and, due to my health issues, have actually always seemed 20 yrs older than most everyone around me.....although, of course, on the surface I look pretty good when not in a flare: typical!!!!!

Hope this makes sense....I'm very greatful to have finally been diagnosed 2+ years ago and immediately put on plaquenil 400mg which is helping a bit generally, but disability in my extremities (due to a typically complicated mix of issues) and fatigue don't seem to be reducing.

12 Replies

  • PS when I say: "disability in my extremities" I mean: head (brain fog etc etc) hands & feet/ankles pretty much.....

  • I will start by disclaiming that I'm not a doctor, so don't take my word for it. My view is that once the damage is commenced, it can't be reversed. As far as I understand it, lupus not only triggers repeated attacks on own cells but it also fails to remedy the damage to the full extent. So each time there is a flare, the damage to the cell is only repaired say 97%. Next flare, the 97% of the cell gets damaged again and repaired only 97% of the 97%, which leaves that cell with a 94% of recovery. And so on and so on - don't take the % as gospel, the progression may be really really small but the principle is the same. This gives this disease the progressive nature.

    But as I said above, I might be wrong, this is what I understood to be the case.

    Which is why it is a good idea to be on top of our symptoms and act swiftly to stop the flares if we can.

  • Thanks p: as usual you give me a clear concise reply with the sort of stats that jive with my basic understanding of this subject. Vvv much appreciated.

  • I think I understand what you are saying. I kind of think of it as if it has caused organ damage through having lots of flares without being treated previously then I guess the damage will be done to those parts. It may be the same for joints etc if you have waited years and not received treatment then I guess it will cause damage to body parts. For me this is the main reason why I stay on the meds (methotrexate and placquenil) as the metho actually suppresses the immune system. I think, from all the research you have done you have known how to minimise any damage to your immune system by healthy eating etc/lifestyle changes so that must have helped a lot too.

    To give an example about prior damage to my muscles that had not been treated as I have lupus/myositis. At the last rheumy nurse visit she said the damage to my legs was alreay done (weakness and starting to atrophy) before I got treated at that hospital. Therefore, any treatment now can help things from progressing further but things will probably not go back to how they were. Thanks for your question because you have reminded me why we take the meds. We all, quite rightly, question medical professionals now about what we are doing to our body and the effects that the meds will have. However, I think if we were to go back in time then there would have been more serious consequences if we were not on the meds. It's a difficult one and I question myself constantly about this too. For me the pain in my stomach, chest and all over was getting unbearable before the meds and I have quite a high pain threshold normally so it was the only answer as I was not coping.

    For me my attitude is that I want to live in the 'here and now' and for my health to be able to let me do that. I wasn't doing that before January as I was experiencing one flare up after another with intense pain. It was changing my personality as I was often just retreating quietly upstairs to my room to try and just deal with this whereas I am normally chatty and like to be around my family. So as much as I dislike being on meds it's how it has to be really.

    I guess we are all individuals and will all have our own thoughts on this - a great question Barnclown by the way x

  • Thanks mstr: you could be speaking for me!

    I guess this ? Is on my mind cause i can see there is no going back for some of the deterioration in my bod, and after ll, at 59, that's kinda easier to accept than if i were younger...i guess...and, having come to terms with that, I'm wondering whether, 2 years on from starting plaquenil 400mg daily, I'm ready to question my gp & rheumy about going up a knotch with my meds.....cause, after all, 59 isn't too old to try to slow my rate of irretrievable sle progression.

    Recently I had a steroid injection in the worst bursitis/neuroma in my worst foot, and responded (cautious: it's only a month on) well. so now we know I do react sweetly to injected steroids (for years I've been responding well to rubbing prescrip steroids on conditions in various bits of my bod) so another long-experienced and very meds savvy lupus friend is urging me to try a prednisolone taper to see how the fatigue & other extremity issues respond. My rheumy has recently sent me home from a routine 6 monthly review in clinic with boxes of prednisolone for a taper, should I ever flare enough to want to try prednisolone out, but so far I've just done the 'retreating quietly upstairs' thing you describe so well. I see my gp for a nice fat 20 min review of misc stuff soon, and am thinking about asking her whether we could do the taper trial together without involving rheumatology.....but I guess really I should at least give our specialist lupus nurse a heads up first....I guess the idea is just to see how I respond to a oral steroids?!

    I'm not scared of steroids (my hero husband was on them 20+ yrs for crohns and I know how great they are. But also, posts here on forum tend to be about trying to get off oral steroids....and i had to watch him go though the issues involved in doing that several years ago: he is fine now! But whatever, so many of us here on forum seem to prefer being on metho). I'm just feeling cautious and trying to make informed choices

    Any & all advice/thoughts will be v welcome.

  • Steroids are used to knock a flare down, rather than being used as a maintenance drug - the side effects are too serious for a long term treatment, as you know from your hubby.

    If you are looking long term, then your rheumatologist will look to immunosuppressants to help. But immunosuppressants dampen the attacks, they do not stop them. At the same time they stop your own protection against infectious diseases and against the proliferation of rogue, cancerous cells. So there is always a balancing act between wanting to prevent further deterioration but not damaging your body unnecessarily by using medication that could be toxic and deleterious.

    I don't think you're the only one thinking at this, we all are but there is limited choice and it all depends on how we feel and how our bodies cope with this horrible illness. I feel for the doctors, to be honest, all they can say is 'here, take this drug and hope for the best'...

    I hope you find your ideal treatment plan soon though.

  • Thanks again, p

    You've hit the nail on the head:

    now you remind me to think clearly:

    one of my main my longstanding SLE predilections is to infections generally and, in particular, one of many years is my upper jawbone which continues to simmer.

    Also, cancer is a significant concern for me: i have shown a predisposition to metaplasia, and I have had a Chondrosarcoma amputated on one hand, and am a DES daughter so more prone to rare vaginal cancers etc, and a close family history of colon cancer

    I think these are the main reasons that, as long as i am coping better with my version of lupus thanks to plaquenil, my drs & I have stayed away from discussing immunosuppressants.

    And probably this is why I've been encouraged to take prednisolone for flares only

    So, hey, this adds up to a good draft treatment plan! Sorry to say, so far my rheumy & co haven't used that phrase ref my situation.....but, now I'm doing to start a document up on my computer called 'treatment plan' and make sure I bring it to all rheumatology clinic appts, plus refer to it in between when I'm attending all those other depatment clinics for all my secondary stuff (like the rest of us)

    I'd feel truly lost with out you and everyone else on this wonderful forum

  • Good idea about referring the doctors' to it and write somewhere the dates on which you review the treatment (either on your own, like today, or with the doctors) and the reasons for not changing or changing. We tend to forget in the long term.

    I wonder why you continue to have the upper jaw infection, it means that it doesn't clear properly when you are treating it. The jaw is an enclosed area, you shouldn't get more infection once you get it sorted out. I suspect you have seen maxilo-facial surgeons about it? I know there are several procedures where they can replace the affected bone with some from the lower jaw, for example, in an effort to get rid of the dormant bacteria. Have they looked into the particular bacteria causing this and as infection is recurrent, have they changed the antibiotic to tailor for that specific bacteria?

    I'm probably getting into too much detail here, it is just the sort of questions I would ask myself, you probably have been there, done all that already, so apologies if you feel i'm butting in.

  • So helpful Purpletop and again something I can relate too. We are dammed if we don't take these meds and dammed if we do too - not an easy choice.

  • I question my choices on a daily basis, particularly when the symptoms are bad. It makes me want to scream sometimes!

  • Glad it's not just me then. Everyday I think I wonder if I could come off these meds, have they got the diagnosis wrong, could I now be returning to work, can I cope with work again..........so many questions! I am learning to ditch my need to plan everything type of nature to a 'just roll' with it all attitude. How illness changes us!

  • I am glad of your comments re my osteomyelitis, P, and hope it's ok if I reply in a message on forum. But if anyone reads this and wants to discuss this condition, I am very happy to

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