How do you describe active disease?

Boomer13

Hi everyone;

I've completed my first month on triple DMARD therapy for PsA. I seem to have come out of the last flare and have been battling various side-effects from the new sulfasalazine. To help with this, and fulfill my rheum's instructions to be more active, I have let my GP experiment on me with a med for fatigue. I was trying to do short swims and walks and finding I was sleeping for two hours after any exercise. I am trying to push through the fatigue to do my exercises (as instructed). I always thought extreme fatigue meant active disease.

The med is helping; I'm able to do my walks, swims and complete a few well-paced household chores, which really helps me feel like I'm not completely useless. However, I'm now getting more and more painful again, but not like I'm in a flare, and I completely pass out when the med wears off. I don't think I'm overdoing it, as all is short, easy and paced exercise.

Normally, pre-DMARDS, I would have been in full-flare by now with exercise. I have always had sequential flares, so this state of things is new to me. Anyway, my question is can you be between flares, have flares under control and still have active disease?

Yours, somewhat confused,

Anna

Mat48

Actually Anna this is a really interesting question and one that I often wonder too. Mind you I have RA and mine is not at all sequential and hasn't learned to play by any rule books I've read yet at all :roll:

I think the answer is yes - inflammatory arthritis can be active even when not in a state of flare. Not everyone knows when they are flaring - I don't - but sometimes when I have thought myself quite okay my ESR has been up in the high 60s (I've been able to locate a sore and swollen joint retrospectively though) and at other times (probably when I get my latest blood results tomorrow) I have felt sure I was in a big flare and yet my ESR is only around 30. But as I say it might be different with PsA. Hope you get some more knowledgeable responses than mine though. :?

dreamdaisy

I know from grim experience that the bloods tell you very little: low inflammation and you feel grim, high inflammation but you feel OK. Auto-immune arthritis defies any form of definition because it is so unique, each and every one of us is different in what we feel and how we deal with it. I have been on a triple therapy for years and still flare regardless.

As you have probably gathered by now I am not that interested in what happens and why. I have learned to 'listen' to my body and to react accordingly (but now I am choosing to be very deaf considering what is ahead). You do what suits you - never mind theory, bloods and medical advice, learn to trust yourself. DD

Boomer13

Thank you Mat. Yes I forgot throw the rulebook out, it's not going to play fair. I've always been coached by my docs to respect my fatigue and rest. Now they're telling me to fight it. Confusing, but maybe they want me to provoke it a little.... :shock: to see if the sulf is working.

Thank you DD. You have so much experience dealing with this, I really appreciate your input to get me back on track. With the meds it's like chucking everything up in the air to see what settles out in the way of symptoms/side-effects. I will be more fierce in trusting myself.

dreamdaisy

Fundamentally the disease is always present whether it's under control or having a snap at us. The meds suppress but it can break through regardless.

I remember when I was unaware of what was happening to me that after walking, cycling, swimming or dancing my knees would balloon for a good 48 hours after. That was my body protecting those joints - in my experience a flare is a very different thing, that renders me bed-bound form some time. Last week I had three days in bed but that wasn't a flare, just extreme tiredness. DD

barbara12

Hello Anna
Sorry I cant help, but I am very interested in the meds for fatigue...I find I can fall asleep stood up... :roll: maybe you have overdone things because these meds allowed you to do more..it could be the case of getting used to them and pacing yourself...sorry Im not much help..I hope things improve very soon x

stickywicket

I don't know how much of a help (or hinderance :roll: ) this will be but I find the word 'flare' is used by different people in different ways. I've always regarded a flare as something that messes me up so much for so long that at the very least a/several steroid jab(s) was/were required or, more usually, a change of meds. Anything less than that I've just seen as the RA doing its stuff, possibly because I've done too much of my own stuff disregarding it

Boomer13

Thank you ladies for your input and support.

I hope one day sorting this all out will become easier. My experience is like yours DD, a flare begins and I become bedridden. This is more blunted. But trusting myself, I think it is a flare even if low-key for now.

Barbara, The med for fatigue does help wake me up but the downside is when it wears off, I must be be in range of my bed! Not sure I like it, but I guess it will prove my fatigue is physical and not due to depression. This sleepiness is horrid isn't it? Though, I guess to some of our insomniacs, it must sound wonderful.

Thanks Sticky, I find the expectations I have of the meds are unrealistic, the hope of feeling like I used to is far too seductive. In somewhat twisted fashion, I find myself envious of you who have had your RA all your life and better able to tame your expectations. Mine still go off in wild directions!

dreamdaisy

I agree with you on that, Sticky. The 'f' word is over-used and usually in the wrong context, a flare is not something which passes within a few hours or a couple of days, well it isn't for me. DD

Boomer13

Interminable comes to mind. I suspect that when I think mine has 'ended' it's really just changed character and is inflaming some other joints/tissues. I've been thinking about it the wrong way round.

Mat48

I don't think the term flare is used too lightly in the same way that people say they have flu when in fact it is just a heavy cold. I assume flare means that pain, stiffness, general unwellness and fatigue all intensify from a person's normal? For example with me flares used to be short lived episodes of icy coldness in extremities followed by rapid onset of excruciating pain in one of two joints - which would last a day or two. This was a flare for me.

Nowadays it seems to be week or month long periods where I can't bear to leave my bed and I feel flu-like and lousy with some pain in feet and ankles. Now this might seem relatively innocuous to a person whose whole body is riddled with pain constantly - but it is a flare for me nonetheless, and I'm only just learning to recognise this. So it is maybe more like the ESR or CRP in that one person's high is another's only slightly raised. We all have different pain thresholds too. I think the disease trundles along anyway doing its bit but flares are when more serious collateral damage can occur.

Mat x

lulubell69

Hi
Ihave RA and for me a flare up is when a joint, without warning becomes very stiff, very swollen, hot and extremely painful. A flare usually leaves me bedridden or immobile and almost always the intensive pain leaves me very tearful. This usually lasts a day or two. On very bad days I also describe my whole body as flaring. This always happens when I am on no meds. Although I live with pain, stiffness and mobility issues on a daily basis, I usually describe the disease as active, very active etc. as does my rhummy.
However, when reading the other views I realise peoples views and experiences are quite different, it also depends on the type of arthritis. It would be interesting to see how doctors describe a flare.
Very interesting question.
Les

Toots

Boomer13 wrote:

Normally, pre-DMARDS, I would have been in full-flare by now with exercise. I have always had sequential flares, so this state of things is new to me. Anyway, my question is can you be between flares, have flares under control and still have active disease?

Hi Anna x I hope you're listening to your body and feeling ok today x Hugs! As you well know, I can't really comment being relatively new to this, but I might suggest that this may still be the flare you know (and love! ha!) but seem different - indeed slightly diminished - now that you're on combination DMARD therapy? Just a thought, that perhaps the sulf back-up is making a difference to you. x

Boomer13

Hello Toots! Glad to hear from you. I've been wondering how you are too? You'll have to post an update sometime....Have you seen a rheum yet? Sorry, I've lost track...

Well, you seem to have very good instincts as I am in the same flare I know (and dislike intensely ) I don't know about the latest GP's experiment; I'm bearing the brunt of it's failure but at least I'm getting a little fitter. I was horrified to find out I gained 18lbs in my four months on prednisone :shock: I was a little skinny prior to this, though.

Exercise is still a trigger; I think we have proven that now, and we may be able to provide my rheum with the swollen joints he wanted last visit The pain gets better with rest, then finds a few joints in which to lurk. When sufficiently annoyed with me in my new exercise regime, it leaps about my whole frame and sends me back to bed again. I'm persevering because I've been told to exercise anyway, but it's hard to keep getting out there when I already know what's going to happen. I haven't done any back exercises since my last very bad episode; I find these the hardest, but maybe next week? Gp has prescribed a stimulant to help me with fatigue and I told her it works: I'm now able to do enough that my pain meds are not working! It's very masochistic, this experiment, but I've found some extra courage to see it through. Sadly, I've been worse than this.

I'm not finding much benefit with sulfasalazine and it takes my fatigue to a new level. I've been taking it for 5 weeks and now my GP is asking rheum if we need to up the dose :shock: . I'm about ready to throw it away due to side-effects. Only six weeks to go, so I guess I can hang in there. Psoriasis is creeping over one foot and ribcage despite methotrexate and is hideously itchy. I've added eye troubles now to my list of ailments so I should be a complete disaster for my next rheum appointment in January. I guess we will have proved I have unquestionably failed my meds by then.

I'm doing my research on biologics and I'm not overly excited by going this route, but still very glad it's an option available. It seems they are the best option for PsA/AS should you fail DMARDS. Oh, and I found out I am HLA B27 positive which suggests my spinal troubles are AS. At least I still have my cast-iron gut , although how, I do not know.

Sorry this is long Toots, hope you are not sorry you asked!!
(((((())))))xAnna

PS, cat-therapy is still working....

Boomer13

Boomer13 wrote:

I'm doing my research on biologics and I'm not overly excited by going this route, but still very glad it's an option available. It seems they are the best option for PsA/AS should you fail DMARDS.

What I meant was, these seem to be the best option but unfortunately, we have to fail DMARDS.

Mat48

I read somewhere that PsA has less rigid criteria for anti tnfs than RA because the DMARDs are generally known to be less effective for the Spondyloarthritis family than they are for RA?

I really feel for you Anna - you have so many different things to cope with re your symptoms. Those whom I know to be doing well on the tripple DMARD therapy (therapy always sounds a bit misleading to me in this context?!) have RA. Those I know with PsA seem to do much better once they get onto one of the biologics so I'm really hoping that you do qualify. It would be wonderful if you could get a break from pain as well as other neuro symptoms we both suffer from. Mat xx

Boomer13

From what I've read, Mat, I think you are correct.

Mat48

Yes - I suppose this is why it's actually pretty important that rheumatologists diagnose our conditions correctly really. Mat x

Boomer13

I think the second-line treatment protocol is still DMARD therapy but maybe this will change when more specific research is done on PsA.

Toots

Yeesh Anna, it's a terrible state of affairs that new meds are working so well that you can exercise as instructed by your new doctor, and have things so bad the pain meds don't touch the resulting pain! :shock: I'm not entirely sure if there is a highlight there at all!

I think I mentioned before, that it took me nearly 3 months to get past the sulf side affects, so hang on in there. That said, I'm not convinced it's doing anything for me at all, but I know they say 6 months to start working ..... I was hoping the sulf would control your psoriasis though it doesn't seem like it right now, I dearly hope it kicks in for you

And eye troubles? Sigh. Where's that magic wand when you need it, huh?
I guess on the bright side, your rheumy might be excited to see the state you got yourself in! From a purely scientific perspective, of course! I've heard generally good things about biologics, scary though they are, so perhaps decisions will be made in January and they can get you started on something that might help. One can only hope, right? I don't know much about AS so I have no clue whether new meds would also help that, but at least you know what you're dealing with.

Sending huge huge hugs as always. Never sorry I asked hun, you've been a rock to me. Hoping kitty therapy continues to work, it's the best kind ;-)

xxxx

ETA my rheumy appt is 10th December, I'll post for pocket duties soon! x

dreamdaisy

I am aware of those with PsA who have done well on the biologics, they were people who joined here for support then, when the meds kicked in, deserted us for brighter, fresher and greener pastures. They all had one thing in common: early diagnosis and a fast-track approach to the stronger meds.

I think the forum is rather skewed in its tone because of the following:

1. The majority of us on here are not responding that well to treatment (that's the auto-immuners). Those who are don't post.

2. The OA-ers are getting to the crunch time for new joints which means their pain is pretty fierce and long-standing. It is also difficult to explain to those who are new-ish to OA that they may have to wait for some time before they can have their operations.

3. Then we have those who are new to this malarkey; they are struggling with getting to grips with the idea that they have an on-going disease, the weird idea that they have to take meds, coping with pain and the frustrations this brings. It's tiring trying to answer unanswerable questions.

Basically there is very little which is positive on this forum which is a shame because life with arthritis is not all bad; it's different, limiting and frustrating but once one learns to live with (rather than against) it things can be better. DD

Mat48

I agree with you DD and know that I'm one who often asks unanswerable questions. There are other reasons why some people use this forum too though. I think the isolation some of us experience from knowing others with similar problems is one of my reasons for coming here. It saves us moaning on to friends and family.

Even when not in pain there's the fatigue, the skin issues and the drugs we take and the uncertainty. For example I got landed with driving another woman to a mutual friend's birthday bash tonight. She said "oh you could drive since you can't drink on your drugs can you?!". Now I'm feeling grim about the drive (gale force winds and rain) - not drinking is no fun despite only being on Hydroxy and yearning to get some wine down - and having to stay late when I just will want my bed and a hot water bottle plus my antihistamine and Amitriptyline - even feeling well as I do. I still feel like a fish out of water when I'm with properly healthy people as I will be in a few hours time. Its nice having somewhere to come to say this to with those that understand.

I remember when I had six very good months on Hydroxy and Metoject and came on here to tell people how good things could be. Shame it didn't last but its really cheering to hear good news sometimes too. Mat x

dreamdaisy

So you drive her there and then tell her when it's time to go home. If she doesn't want to leave then that's her look-out. I don't feel like a fish out of water when socialising with the healthy, actually I can no longer understand (or remember) how people live as they do - as far as I'm concerned they're the fish.

I don't talk about arthritis that much to those around me, and I don't talk about mine that much on here because it's not that interesting. I realise that the forum is a valuable resource for people who are struggling with it all, especially if they live on their own, so that is why I am here as much as I am. I do my best to help and, after a good few years sliding gently down Decrepit Hill I do have a fairly good idea of how difficult things can be. You'll get a break from me soon though, we'll be cable-less when we move for around a week. DD

Mat48

I didn't mean I wanted a break from you of course DD. Just that I knew how you would react to yet another bout of Mat denial and was trying to sneak past and avoid some home truths. You are always pretty straight and se times I childishly just want to be deluded! But I mean this is a very friendly way of course. I won't mention RA tonight at all and will be firm about going home time. I just fancied a night of alcoholic abandon but guess I can do that tomorrow night with husband and double episodes of Borgen instead!

Hope the packing isn't too horribly frazzling. Its definitely one of the things I would be reluctant to do again. Bit then we moved 8 times since living up here with three young kids in tow so I regard this a place to remain for he next decade if possible. The boxes are flat packed in the loft though so we haven't burnt our bridges yet. And the house is on the side of a steep hill too so a time may come..! X

stickywicket

Mat48 wrote:

Even when not in pain there's the fatigue, the skin issues and the drugs we take and the uncertainty. For example I got landed with driving another woman to a mutual friend's birthday bash tonight. She said "oh you could drive since you can't drink on your drugs can you?!". Now I'm feeling grim about the drive (gale force winds and rain) - not drinking is no fun despite only being on Hydroxy and yearning to get some wine down - and having to stay late when I just will want my bed and a hot water bottle plus my antihistamine and Amitriptyline - even feeling well as I do. I still feel like a fish out of water when I'm with properly healthy people as I will be in a few hours time. Its nice having somewhere to come to say this to with those that understand.

Sometimes 'no'is the hardest word, Mat. But sometimes we need to say it and explain why. Otherwise, how do people learn?

Mat48

Well it was me who couldn't leave the gathering not my friend in the end - who needs booze to be a talkaholic :oops:

I got us home before midnight - took my antihistamine and then lay fretting about the whereabouts of youngest son who had left at 6pm to wash up in a local restaurant. He was tired and reluctant when he set off and has no phone signal in there. At 12.30 I phoned the restaurant and son answered sounding very jolly. It turned out to be a wedding party and he had been included in some of the jollity as a perk (and because they all know him). I woke this morning hardly able to walk the the toilet for stiffness and ache. I feel like I've run a marathon not sat for hours telling and listening to silly stories and eating shed loads of gorgeous puddings. Oh well I had it coming! :roll: