When NOT in a flare, do you still have residual symptoms - UPDATE

[Purpletop]

You may recall that a few days ago I asked about residual symptoms and whether you still have them while you are on medication. Many of you have responded that yes, there is no symptom free time, other than perhaps few hours here and there or maximum a day at a time.

In my post I also mentioned that I will be seeing my rheumatologist this evening and that I was intending to ask him about the expectation we should have regarding residual symptoms. Some of you wanted to know his views , which why I'm posting this now.

My rheumatologist said that the aim is definitely to get a patient to a symptom free state. He has both patients that are on combinations if drugs and still struggling with residual symptoms on a daily basis but also patients that have reached a symptom free state both with the help of medication but also through natural remission.

So here you have it - there is hope but it will depend on whether our bodies respond to treatment, if they don't, then the treatment needs to be tweaked to the extent possible until we get to a symptom free state. Sadly not everyone can reach that but as I said, this definitely gives me hope.

Meanwhile my dosage has been increased slightly to hopefully tackle my residual symptoms. If the bloods stay ok and symptoms improve, then I'm ecstatic.

Thank you everyone for helping me formulate the right question for my consultation today.

[joannebond360]

Hey purpletop.

Thank you so much for posting this. Does give us great hope! That's fantastic, hope upping the dose helps you. At least now at my next appointment I can tell my consultant the same, about my residual symptoms. Because I was better than before the methotrexate I just told him I was feeling ok when really having daily symptoms still just not as bad.

Jo x

[Purpletop in reply to joannebond360]

Obviously each consultant has his/her views about this issue. Just because mine believes this it doesn't mean that every other rheumatologist will agree. I happen to support my rheumatologist view and I'm thankful to him for fighting this together with me.

[mstr]

So pleased the appointment went well and that the aim is to be symptom free. Your question has helped me to understand this so well as like Jo above I know my methotrexate is helping but I knew I had daily symptoms of which I keep a diary. My rheumy said that the aim was to get me flare free but it isn't just about that it's about the daily symptoms too. Last time I was just pleased that the methotrexate didn't go up further from 20mg weekly and 400 mg placquenil daily and option of steroid injection too when things are bad. Funny enough today when I was talking to my mum I said I was just sooo fed up of taking the methorexate as I do feel 'rough' Thur evening/Fri morning after I have just taken it and she said to listen to what the rheumy is saying until at least the next appointment. I guess we have to place our trust with the rheumy and I do think mine is good too. I guess it's also the fear that if we come off the med we are on then it's just another med to get used to and will it be any better.

I will re-read your post though before my next appointment in February as it will help me to explain what I couldn't before. Probably because in the time allotted we are trying to cover the dates we flared, what the symptoms were and how we are adjusting to the med we are on, then we have a physical exam (brief) to check joints/movement etc. So it's so hard to fit everything into the appointment. I wonder if the aim is to reduce the flares then the residual daily symptoms? I have seen on here that that rituximab is helpful so that's another question to ask.

Anyway...pleased that your appointment went well for you and that it has given us so much to think about too.

[Purpletop in reply to mstr]

The aim is remission but no one can get there in one leap. The doctors will first look to stop the acute phase (the flares), so drug combinations in high doses are usually used at the beginning. In principle, once those have been stabilised, the doctor should then look to improve the day to day manifestation of the disease (the residual symptoms) by tweaking the treatment plan. From what I read on this forum, many doctors seem to be content with achieving step 1, I.e stopping the acute phase, but few continue to work with their patients to address the rest.

Which is why we have to question all the time, in case.

[misty14 in reply to Purpletop]

Very interesting answer from your Rheumy. Hope the dose tweaking works for you. Take care x

[sezzie]

Thank you so much for that post as I have been wondering about that too. Fingers crossed we all find that happy cocktail of meds & have even an hour symptom free!

[EOLHPC]

For what it's worth, i think your 2 posts have provided some of THE best overview of lupus treatment i've ever found!

Thanks again, Purpletop. And thanks to everyone who took part in these 2 question posts of yours. I have a feeling loads of forum visitors will have benefitted from your thoughts.

For my part, I also feel the urge to thank lupus uk & health unlocked for providing is this forum so that this great stuff can happen: HOORAY! Coping with Lupus & the medical system is so tough....you all make a HUGE difference!

[Purpletop in reply to EOLHPC]

I agree, health unlocked and lupus uk are doing a great job facilitating this exchange for us, especially because there is no consistent approach across the medical profession in respect of diagnosing and treating this disease. What else do we have left but each other's experience?

[EOLHPC]

SO true!