Yes I've got to a point at which I'm asking seemingly daft questions with impunity! I posted about how I'd lost confidence in my rheumy & I'm now in the process of getting another one but realistically it'll be a while before I see him or her. Meanwhile this is a confusing disease at the best of times but when the all-important expert has done your head in, confusion multiplies I find. And I need to get an angle on things before seeing a new consultant.
At last appointment the verdict was 'mild inflammatory arthritis'. 3 months prior to that: 'severe'. Over the last 15 months I've shimmied back and forth between different verdicts. The only things that have really changed is that my massive knee swellings have gone down a fair bit & so has my ESR. Big knees and high ESR have been my passport to being taken seriously - without those in-your-face signs I fear that everything will get blamed on OA and my PsA will be called mild even if it isn't.
I need to check with GP what latest bloods show but I feel like my ESR is rising again. It's never stayed down long before. My hands are now pretty bad - swollen wrists, little strength, fairly constant pain in various hand / finger joints that I can live with but everyday tasks escalate pain unless I'm very careful. Soles of feet often tender. My knees are damaged & rheumy insisted the intermittent stiffness & pain is now down to OA. But there are some days when I'm very limber, can walk & almost dance with ease & feeling of lightness. Other days I'm dragging my legs around & walking's a major effort - the variation is mind-boggling & doesn't seem linked to how active I've been.
I don't get morning stiffness - if I wake feeling stiff that's it for the day but usually eases up by evening. I don't get sudden swellings or anything I'd think of as a flare. Just frequent days when fatigue, slowness and stiffness hit me hard. I swim & walk often, push myself physically, eat well etc.
I'm not working now, well I do some work at home but there's no way I could go out to work anymore, I'd collapse after a couple of demanding weeks & some days I'd be useless anyway. I suppose that's the main thing that makes me think there's nothing 'mild' about the state I'm in.
I'm sorry for the length of this. Maybe what ails me isn't 'mild' but is it mainly PsA? I don't expect anyone to be able to answer that question categorically but I'd like to find out if others experience similar symptoms, a similar pattern or lack of one.
I have to say, I have been lucky. I was diagnosed quickly, even with normal blood work and not a ton of swelling. At first it was just a few joints in my hands and one knee. It has progressed though, in terms of more joints and damage, all with normal bloods. The better rheumy’s will examine you, and listen to you, and not rely solely on labs and imaging. Ideally, there won’t be damage on films.
I wouldn’t worry too much about mild vs severe, as the doctor version never seems to match up to pain and fatigue levels. More importantly, you need to be appropriately treated, and not worry about terms. It certainly sounds as though switching docs is a good plan.
Since I’ve been treated, I only occasionally have morning stiffness that lasts more than a little while. I still have pain, inflammation and fatigue. It’s all relative. When I’m having to nap every day by noon or just fall apart, clearly it’s worse. But it may not change treatment decisions. When I added in major tendon involvement a while ago, my meds were changed. Keeping goog track of symptoms will be helpful.
I am going to say that your symptoms may feel severe, but the way to really tell how aggressive your disease is, is by comparative xray. Most docs will take an initial set of films and then use those to compare later images with. This is a pretty good way to tell how quickly your disease is progressing.
But it does seem that you don’t have very good disease control because of your symptoms. Better treatment with a combination of of different drugs and PT, might help your symptoms quite a bit.
Do you take folic acid? It sounds like you have severe fatigue. I think it helps some over time. I take 2mg a day. You also could try some pain meds for a while. I look the doc in the eye and am firm because it is very difficult to describe. If they are good, they can read a lot from your face. Wish you luck with new rheumy.
I think being daft is a blessing these days. I walk with a cane now and that gives me some impunity too!
I think PsA revs up on me sometimes. I have had this disease at least since I was a child but not diagnosed until 2008 at 51. When I have been under extreme stress I notice what I now know to be a flare but can also see where I lost function. I think the disease can be mild at times and at other times severe. So even if you know it to be mild today it could be severe tomorrow. I think that is why it is so important we take our meds and eat well and exercise. Because we do not always know when this bad boy is reving up and damage can occur quickly when it does.
Sybil maybe we should form a new group; The Dim Ladies of PsA? I am going to suggest it!
What a good idea, Michael, making being daft a blessing! But on to Sybil’s “mild or severe?” question.
Certainly the symptoms of PsA wax and wane. But in terms of estimating how severe (destructive/aggressive) your PsA is, even a rheumatologist can get it very very wrong. I was with a rheumatologist for a year – a lovely lady, who took the view that my disease was mild. She treated me accordingly. I was scared to death that it was severe, and that while she fiddled, my joints were being destroyed. But I talked myself into trusting her. She was, after all, the rheumatologist. But still, my gut feeling said things were bad. (All the while my ESR was normal and my CRP only slightly elevated some of the time.)
Well, during the year that she treated me with a bit of this and a bit of that, my hips were destroyed and my feet sustained additional damage (they already had some erosions). During that year, when I expressed anxiety to my GP, her answer was “You’ve got OA. You can have OA and PsA together, you know.” She told me to stop worrying so much. (Ya, right!)
Then I did what I should have done as soon as I started worrying about the severity of my disease: I got a second opinion. I was lucky to be able to go to a specialty PsA research clinic. They did a very complete assessment, and their opinion was that my disease is severe, and the damage is considerable. I am now being treated aggressively.
A word about x-rays. Grumpy is right: comparative x-rays will show disease progression in joints. (Inflammation of the tendons and entheses won’t show on any picture, while causing misery.) Unfortunately, who reads those x-rays is critical. My hip x-rays came back as “severe OA”, same as the x-rays on my (now replaced) knees did. But those hip x-rays were read by general radiologists who might not see the subtle differences in the damage done by OA or PsA. When I went to the orthopaedic surgeon about replacing my hip, I asked what kind of damage the x-ray showed. He squinted and peered at the film, paused and said “That’s inflammatory. PsA.” His hunch was confirmed during surgery.
Another issue is using pain as a measure of severity. At the PsA clinic, they discovered that I have an extremely high pain threshold. I don’t feel much pain until there is permanent damage. Not a good thing. Now that I have extensive erosions in both feet, I have plenty of pain. But at the inflammation stage, all I did was comment that I my feet were sore. (To which the “solution” was new orthotics and lose a bit of weight.)
So, I guess what I’m saying is that even rheumatologists and radiologists can get it wrong. Don’t be paranoid, but get a second opinion if you are having doubts. And if there’s any question in your mind about what course of treatment to pursue, choose aggressive.
What a wonderful question! I guess I was "blessed" to get a severe diagnosis right off the bat. My rheumy totally held back a WTF when reading my second set of x-rays, taken 3 months after the first, along with the radiology reports for both. The progression of my disease was that severe. Now, if he went by how I reported my symptoms "fatigue, morning stiffness, pain in my lower back, swelling and pain in my ankles, I probably would have been classified as moderate. I had lived with pain for so long, that I basically ignored it unless it was severe. My rheumy had no idea how I'd walked into the office my ankles were so bad. So, yeah, damage progression (or lack thereof) seen via x-ray / MRI is the best indicator.
Nym, I should have mentioned MRI. An MRI will show things like bone marrow oedema (swelling inside the bone – oowwee!). And apparently there is a type of ultrasound which will detect the vascularization which happens with extreme and prolonged inflammation.
Louise and Sybil – take a look at the interval between the first and second x-rays. 'Nuff said?
Seenie and Louise <3, it was you I was thinking of when forming the Daft & Dim Ladies of PsA <3
There you have it from some of my favorite though very different PsA patients. There really is no way to know if PsA is mild or severe until the damage is done. I think most people with chronic inflammatory arthritis (which ever the type) have incredible pain thresholds. If they didn't have it before PsA they sure as hell do after! I think it is an unmitigated miracle most of us our vertical and going through our days. Yeah to us! Sybil if you have any doubts or even questions get a second opinion if you can. There are not too many options in Vermont beside the University of Vermont but I have gotten other view points by seeing other Rheumatologists in their office when my Rheumatologist is unavailabe (like when mine was teaching in Australia for a year!) Remember to trust your heart for it is true!
Sometimes I think I scare myself just reading the threads.
I like the Dim Ladies idea -- sounds rather soothing :)
Seenie said:
Nym, I should have mentioned MRI. An MRI will show things like bone marrow oedema (swelling inside the bone -- oowwee!). And apparently there is a type of ultrasound which will detect the vascularization which happens with extreme and prolonged inflammation. Louise and Sybil -- take a look at the interval between the first and second x-rays. 'Nuff said?
Nuf said Seenie :) but to be honest, never had any x-rays except hands and feet until fairly recently!! Then MRIs quite soon after. But have learnt not to put a brave face on it with the docs....I just tell it how it is :)
Seenie said:
Nym, I should have mentioned MRI. An MRI will show things like bone marrow oedema (swelling inside the bone -- oowwee!). And apparently there is a type of ultrasound which will detect the vascularization which happens with extreme and prolonged inflammation. Louise and Sybil -- take a look at the interval between the first and second x-rays. 'Nuff said?
There are also odd people like me...my disease has severe symptoms, but not so much joint damage
I've always had the full body, symmetrical kind of PsA. I get systemic symptoms like flu, bone aches, fevers, agonizing pain, eye involvement. Then when everything is under control I don't have nearly the amount of damage is seems like should have had. My damage is in spurts... had a bunch as a kid, then a bunch after having my first child, and not much in between or since, despite all the indications to the contrary.
Some people have damage with no symptoms.
Isn't this disease FUN??!! It's like throwing a dart at a carnival game, not knowing if you will get one of the crap prizes from under the counter, or a nice big plush unicorn.
Oh yes, Marietta, this disease is great fun. Every day a new adventure!
Katie Lady, didn’t mean to scare you with the vascularization thing, and I definitely don’t want you thinking that I am very very smart. (I am a charter member of the Daft, Dim and Deformed.) LOL If you go to the Main page of this site, on the left part way down are two youtube links. Both are good. The male doc’s is a long, detailed lecture. That’s where I found out about the vascularization thing. Found it interesting because that happened to my hip.
I think the only thing that is fun about this disease is the awesome people I’ve met along the way (that would be here!).
Sometimes I wonder how useful those test for PsA really are. My CRP is typically high, but my ESR has always been normal. I have extremely high level of CRP (sent to hospital), but little diseases activity and ESR.
Honestly believe doctors should not rate your disease, and treat you based on all evidence.
This discussion has really helped me, thank you all so much. It’s tough when you disagree or fall out with a consultant - I was beginning to wonder whether I was just neurotic or contrary but I’m back on track now & even more determined to be clearer and surer about what is going on with my joints.
I think 3 months or less seems like very rapid deterioration, possibly rather too rapid for OA ......
Seenie said:
Nym, I should have mentioned MRI. An MRI will show things like bone marrow oedema (swelling inside the bone -- oowwee!). And apparently there is a type of ultrasound which will detect the vascularization which happens with extreme and prolonged inflammation. Louise and Sybil -- take a look at the interval between the first and second x-rays. 'Nuff said?
So... Do MRI's show inflammation? I have MRI's of my entire spine before I was diagnosed with PsA. Would the word inflammation have been used in the report if they had found it? Or just the damage done by inflammation?
Pain said:
Yay!
sybil said:
This discussion has really helped me, thank you all so much. It's tough when you disagree or fall out with a consultant - I was beginning to wonder whether I was just neurotic or contrary but I'm back on track now & even more determined to be clearer and surer about what is going on with my joints.
