I have been wondering how closely the inflammatory markers follow our disease flares. Since I have started on methotrexate I have had fortnighly blood tests. This week I have had a reduction in inflammatory scores (eg CRP down from 44 to 6) which my GP is pleased about. But I have had a grim time of it - my pain levels are up; hands, back, neck, knees. I had such a rough night last night and could barely walk today.
I am a bit worried that blood tests will convince everybody I am doing fine when that is not what I experience.
Well, for some people inflammation numbers mean dot!
Nearly 50 % of us donāt have raised ones to begin with. I can understand your worry, just make it very clear that lowered numbers are NOT leading to better capability or quality of life, if thatās the ongoing situation. Even though lowered inflammation usually (but not always) may minimise some of the long term impacts, the aim of treatment is also to try to restore you somewhat to a reasonable capability and quality of life, so a good Rheumy or GP should listen.
One thing to remember is that long term chronic pain as youāve had does tend to re-wire your pain pathways, so take the time to do all the pacing, gentle exercise, getting as much sleep as is possible, meditation, and eating well, both to give your pain pathways the best chance to wire back, and to make sure that you have given it the best chance to work, and that then makes it easier to convince them to move on to other meds if you need it.
And be as gentle as you can on yourself. In the early days when people on here told me to exercise, I thought they meant a 5km brisk walk, which of course I did and ended up crying and in pain for three days. Not a good example of pacing! I did a great pain course recently that suggested we do 90% of our capacity. There were days when that would have been walking to the letterbox, and that is just fine.
4 Likes
Thanks for such a great reply. You have helped change my perspective on this a bit. In truth, the rheumy didnāt seem to place as much value on the inflammatory markers as the GP. So that makes more sense now.
I am finding that the combination of mtx and steroids have kept the swelling at bay but not the pain although I am still building the dose. The side effects are too much to put up with if there is not a clear improvement in quality of life. Like you I have a tendency to overdo the exercise at times but it is hard not to strive for some part of our old life.
1 Like
I think it depends on the person, as it can be a case of the pain not getting much better for a time, but vastly improved numbers can make you think āwell, the drugs are doing SOMETHING good.ā
When I first got PsA, my ESR was somewhere around 20. It then went up to 30. I asked my GP if we should be worried about that. She said: āoh no. If it gets up to 100 or so then we start looking for other causes - like cancer.ā The next time I had it checked, it was 120 and for the next few months I panicked like mad until it started going down (not by much, but enough). In August, after eight months on a biologic, my ESR was just 3 - and other bloods that had nearly always been out had corrected themselves too - anemia, liver tests etc.
In short, I donāt think they are an accurate way of telling how much pain you are in - but they are a way (in some people) of assessing how much good certain drugs are doing you, whether you FEEL the effects or not. And, if youāre like me, where those ESR levels have spiralled from time to time, getting a result of 3 is something of a morale boost.
1 Like
It must have been a scare when you hit 120. My highest ESR was 57 when I was on sulfasalazine but I suspect going into 3 figure numbers would get the heart pumping a bit. Iām glad you have got it under control now and hopefully it will stay that way.
The hospital didnāt seem too bothered, but I was pretty nervous - especially as Iād been having night sweats and lymph nodes popping up in the weeks beforehand. I think i was on about 80 when I started the biologics, and within three months it was nearer 10.
That is the important bit. Itās horrible when we know things are not so good but our rheumys prefer to rely on data or signs that suggest we are doing just fine.
My esr was in the high 60s and crp was 45 when I was diagnosed. The numbers helped to get my situation taken seriously. Since starting treatment both have been close to zero most of the time, i.e. for the last 6 years. I do accept that, for me, this represents a sea change but esr and crp are far from being the whole story in people with PsA. And if your rheumy knows that, youāre in good hands.
Yes, in a way it took those high markers to get me looked at again. About 15 years ago I was diagnosed by a rheumy with AS. When the range of NSAIDS he tried didnāt help he suddenly decided it was fibromyalgia and discharged me.
As the blood markers started to creep up many years later my GP sent me for a āsecond opinionā to another rheumy. He reaffirmed that diagnosis after 20 minutes without doing any blood tests or any other tests .
By now I thought they were all a waste of time and space.
When my GP retired the new GP was concerned at the blood levels and the swelling I was reporting. He persuaded me to try yet again with third rheumy so I got there in the end.
The moral of the storyā¦I donāt know. Is there one?
1 Like
Everything everyone here says! Iād hazard a guess that for all of us who were hard to diagnose, the inflammatory markers were the things that most often sent the process off the rails. The fact that your rheumatologist didnāt seem to pay much attention to them is the very good news, as Sybil says. In fact, the diagnostic criteria for PsA say nothing about inflammatory markers: the diagnosis is done by signs and symptoms only.
That said, once you are diagnosed, your inflammatory markers can give the doc an indication of whether your treatment is having any effect. Even that, though, can mislead. I was in the 50% or so that always had markers in the normal range. After fifteen years of symptoms, I was finally diagnosed by a rheumatologist. She, being a no-drama type, put me on conservative treatment for what she considered to be mild disease.
I felt awful (such a drama queen, me, with my mild disease) but she was the rheum, and what did I know anyway? Feeling that I was being regarded as a bit of an exaggerator and a hypochondriac, I didnāt complain or talk about my symptoms much. After all, I had mild disease. I guess she saw my inflammatory markers ā which had always been the normal range ā come down on the mtx and she figured that sheād fixed that.
After a year of conservative treatment, but continuing to feel absolutely awful, I consulted a PsA research clinic which did second opinion consults. (The decision to go there was on the strong encouragement of the good people here, mostly tntlamb.) It was an interesting appointment: they were concerned with history and symptoms only. Their verdict? Severe disease, a lot of damage. I was put on a biologic immediately (so quickly that they sought approval from my insurance within the hour). The biologic turned my disease ā and my life ā around.
So two things, Jim: be glad that your rheum doesnāt seem to put much store in your inflammatory markers for assessing your disease. Ignore what your GP has to say about them. And you be very clear and honest about reporting your symptoms to your rheumatologist. How you feel is what is important with this disease.
OK. Thatās three things. LOL
I just find it very difficult because I have also been diagnosed with moderate disease & I do believe that. Methotrexate has dealt with the swelling & my arthritis is now judged to be much better. Again I believe that it is but I still feel that Iām struggling with pain & fatigue. Then maybe there are bits of this condition that you need to learn to live with. Iām new to this & I donāt actually fully understand it all. I donāt knows what is a symptom and what isnāt. Also I donāt like Methotrexate (no one does I know) but itās kinda working so Iām sticking with it. In truth though Iām just not sure that my quality of life on it is significantly better than before. I do have an incredibly understanding Rheumatologist who I can talk to but I donāt. I donāt know why
1 Like
I still struggle with this, I really do. When to simply count my blessings? When to sit down and untangle the mesh of symptoms in order to report them clearly? Itās especially difficult when some things may sound quite mild to anyone who doesnāt have to battle them again & again.
We know ourselves. If you know you could talk to your rheumy but tend not to ā¦ well, then you also know what you need to do differently!
3 Likes
Yes but here are another 3 things to consider;
the pain levels,
the inflammatory levels and
the swelling
IF the treatment helps the last 2 but not the first then it can look like a success to any but the sufferer.
Getting to the biologic in the UK can b a slow process but i accept your points as good advice. It also gives me a lot of hope that the biologic might make a difference however far down the line it is
2 Likes
Yes but I think when you have been told more than once that you have moderate desease then you kinda think in your head oh I wonāt mention that, itās going to seem so minor & its probably not important. You think your over reacting about everything Your completely right about small things but having to cope with them again & again. The things I mention to my Rheumatologist he tries to address & help with. If iv mentioned it & he canāt address it then I tend not to mention it again. I hate bringing up the same things all the time & I feel like I am being so negative so I brush over it. When I first went & he asked me were the pain was I said my knees and hands & feet. That was all true but In reality it was bloody everywhere but I didnāt say that. Iv actually never even thought about that before and it sounds like madness now. It took me 10 mins to actually turn over in bed last year because of the pain I was in & I never mentioned that. Again I donāt know why
5 Likes
Your completely right about small things but having to cope with them again and again
Blockquote
I think this is a common problem. In my early days when people asked about my condition I used to tell them. Eventually the penny dropped that they didnāt really want to know - they were just being polite. And I was spoiling their day by being over elaborate.
In the end you donāt feel good about telling anyone - even your doctor - in case he might yawn, look away or change the conversation.
Human beings can often be quite stoic about pain - as long as itās being felt by someone else. The effect of relentless ongoing distress is real only to the sufferer. So I think we learn to give an upbeat summarised version of our problems to those who ask.
3 Likes
Yes but I think there is also that thing that you have learned to live with some things. You have put up with them for so long that they no longer seem like a big deal to you. They are just a fact of life so to speak. Therefore you just kind of forget about them. They become so everyday to you that you donāt mention them. Like I struggle to use an umbrella now. I live In Scotland & it rains loads. Iām well on the way to just learning to live with this. Also if I use my hands a lot one day then I will struggle the next day. These kind of things are things that I find to trivial to bring up so I donāt. To be honest though I feel like part of this is my struggle to come to terms with my new limitations. If I donāt talk about them or admit them then they will not be a thing. I talk about stuff that doesnāt as much matter in the appointments rather than address these issues. I think my Dr would welcome my being slightly more focused if Iām completely honest. I go in with about 12 million things that I want to say & end up getting totally sidetracked by something that doesnāt matter so much. Iām sure on some level thatās psychological
2 Likes
I would be able to talk to your rheumy ā¦ about you! Just donāt expect me to be quite as clear, forthright and assertive if, for some reason, he were to ask me how I was!
Iām looking at your profile ā¦ age range: 40 - 50. In medical terms that is quite young and your expectations of treatment should be high, I feel. And āmoderateā disease ā¦you know what, I wouldnāt wish moderate PsA on my worst enemy.
If you look back through what youāve written here, there are quite a few points, succinctly made, that need to be relayed to your rheumy. The reason you need to bring up the same old things time and again is because this disease causes the same old things time and again. Youāve already got a category there: āpersistent symptoms that seem resistant to treatmentā.
Categories, lists, careful pruning of said list ā¦ I bet youād do that superbly on someone elseās behalf. Time to apply all that to yourself.
2 Likes
I struggle with this too, the notion that that is, that is what we must do. Itās not what you must do starting out though. Itās better to start out detailing everything to your rheumy. I went to appointments with various lists, the best ones were detailing my worst day (yes that meant keeping a diary so I could see what my worst days looked liked and felt liked). I also went with a body map so I could show precisely where pain sprang up and indeed jumped about all over the place. I also presented a succint history of how it developed. I was lucky in that regard as PsA hit me very quickly over about two months so it was easy to detail. And I also went with just loads of questions. And I wouldnāt leave the consultation without checking off everything I needed to ask.
When I got my first letter, (from my second rheumy) I corrected bits of it that were incorrect and sent it back and asked for a corrected copy and for the same to be sent to my GP.
After all that, I know now we can communicate effectively. And thereās trust between us and we both enjoy meeting each other around 3 times a year.
It was only then that I accepted there were some bits of this condition I had to live with. But I still feel like I should āpushā how horrid they can be sometimes. But Iām a confronter of things like that. Iām also just really curious to try and understand how this disease operates so I do my own research on what other doctors and scientists think and why and often ask at appointments for thoughts on what appears to be latest research too. Simply because it interests me.
Note though @Su26 I was initially diagnosed with āmildā disease. Sadly it rapidly got bad enough over a couple of years to be deserving of being prescribed biologics by the NHS, with bits in between where it nearly disappeared too. But in between that I dealt with a fractured pelvis when I didnāt fall, so eveyone thought it was osteoporosis including me, but it wasnāt, so we simply donāt know why that happened.
Iāve only been on biologics since July and as yet Iāve still to see that āthey are going to turn my life aroundā like so many others say they do. So much so that only last Friday I phoned my nurse help line and told them that given Iām off on holiday to the Lake District shortly, Iām going to need something to pep things up as otherwise I wonāt manage it. And that isnāt so I can go fell walking, itās merely so I can toddle around bits of a lake now and then with the dog.
Moderate disease doesnāt mean youāre then stuck with just mxt as your only med. It could be that adding in another DMARD might make things feel a whole better. Itās such a frustrating trial and error thing but so worth it too. My view is if I donāt ask to be treated so I can be the very best I can be, then whatās the point?
And incidentally I get blood tests done regularly as we all do. I canāt remember when anyone discussed my results or thought they told us anything we needed to know. Certainly neither my rheumy nor my GP feels a need to discuss them. I assume though if something was wrong Iād be told. But their results never seem to feature in any discussion. What does feature every single time I see my rheumy is a full head to toe physical examination and she finds things then, I didnāt even know were causing me a problem.
We can only be our own best advocates. Sometimes youāve just got to learn how to do that, appointment by appointment. When you feel you are doing a good job in that regard, the bits you must learn to live with are sort of just easier to accept really. Or at least thatās my experience to date.
We donāt really discuss my blood results either and I also go under the, if there was anything wrong then he would surly mention it. It would seem that Rheumatologists do rely on you to verbalise your pain but I do hate that pain scale thing. I donāt really get theā¦pick a number between one and ten for pain/fatigue etc. What do you mean today? Now? Yesterday or tomorrow, I mean specify a time frame here. What exactly does this thing indicate? Itās very variable and not that straightforward at all. Yes, there are questions that I do need to ask but then he asked me last time if I had any and I said noā¦. What!!! yes you did Susan, you had loads. Moderate disease is all very well and good but itās the impact it has on your life that isnāt so moderate. Itās the limitations that its putting on you. The fact is that there are things I now find difficult that I didnāt even give a second thought to before. That doesnāt feel that moderate to me and the pain scale annoys me
1 Like
Sure, Susan, pick a number! LOL that pain scale is SO annoying. But you know what? Apparently that simple tool is one of the best descriptors of pain severity known to modern medicine. Go figure! Nope, I donāt get it either.
But speaking of tools, when I go to my regular rheumatologist (a med school prof) I complete a questionnaire of about 20 questions on my pain and functioning. Yes, on a scale of 1 to 10 ā¦ LOL and then walking, lifting, grasping etc questions. But when I go to the PsA research clinic, I do a questionnaire of about 10 pages, with VERY detailed questions on absolutely everything. (Like Can you grasp a brush and brush your hair without pain?) That questionnaire is then scored, and also used in the conversation with the doctor. I never complete that questionnaire without being reminded of something I need to talk about.
For a long time I kept a ālaundry listā of aches, pains and problems that Iād bring with me to every appointment. Since being āinstalledā with my current docs, though, thereās no need, because of the questionnaires.
Does anybody elseās rheums use questionnaires? Do you keep a list of issues? I think itās important that you donāt make a judgement about what you can live with/cope with. Who knows but that something you figure you can cope with, for the doc is a clue to something important going on.
Nothing about this disease is simple.
2 Likes
Iām sure they have a good reason for using it of course they do. But itās massively vague it doesnāt explain anything really and mostly you just end up guessing because if you think about it for longer than ten seconds then you thought about it for too long apparently. Ok then 5 or 6. Thatāll do lol
1 Like