I moved my 3-month check-up with the Rheumatologist to Tuesday, as I feel my medication isn’t doing anything. I was officially diagnosed with PsA last November (after years of knee problems and sudden wrist swelling last fall). I started Plaquenil in December, and my wrist swelling/pain went away, along with some swelling in my bad knee.
However, both knees are now swelling, and I have a confirmed Grade 4 cartilage lesion on the outside of my femur (confirmed last week). Even if I change PsA meds, I’m not sure anything can slow degenerative changes. I think the hole will just get bigger, as it’s already through to the bone (?)…I have a history of severe cartilage loss in an extremely short amount of time (from no articular defects in the right knee to 2 huge ones, down to bone, in less than 2 yrs), so I’m curious what the Rheumatologist will tell me. I then see the Ortho again Wednesday to get more information on what to do next…
I’ve been through this )nightmare on the right knee back in 2015/16. It will need replaced in 5-7 yrs, but for now, the cartilage implant of my own cells is doing wonderfully. (I had ACI surgery in 2015/16). This time around with the left knee, we were just checking to see if it had ANY signs of cartilage loss, because of the scary history with the right knee. The left one hadn’t bothered me in 15 yrs, except for recent swelling since July, but the Orthopedist and I both wanted to know (just in case)-----and sure enough that knee is being eaten away too.
I think a medication change is in order (my Orthopedic Dr agrees), but is there anything else? I suspect this will all end in a medication switch and a decision to let the Orthopedist decide what’s next. I often feel the Rheumy isn’t being aggressive enough. It doesn’t help that sometimes I only get to see the PA. I’m a tried and true knee expert by now after 9 surgeries in 19 yrs—LOL—, but I feel totally inept with the Rheumatologist and what might be possible to slow anything down. All ideas/suggestions are appreciated. I forgot to mention my elbow has bothered me the last 6 months, no injury occurred though, and it was confirmed to be tennis elbow last week (another possible sign the Plaquenilisn’t working???)…
PsA can cause all sorts of things to happen inside joints, especially swollen joints. Osteoarthritis is just one of those things. The joint is ‘bathed’ in inflammation so it’s no wonder cartilage deteriorates, which is what OA amounts to.
In my experience, once OA type damage is a done deal, it is all too often seen as ‘natural’ wear and tear, especially if joints are no longer swollen and are functioning well as a result of effective treatment for PsA or simply because a flare up has run its course. However when joints are persistently swollen I reckon it’s harder for doctors to ignore a likely link between degenerative changes and PsA.
I too lost a lot of cartilage in my knees in a very short time around the time I was diagnosed with PsA. I’d had x-rays when it was thought that all that was wrong was OA, then again when PsA was diagnosed with just 2 & a half months in between. There was no damage to the knee joints at the first x-ray, significant damage by the time of the second one. I suspect the damage was compounded by the fact that I couldn’t walk for a while and got muscle wasting. But all in all, nobody denied that PsA was the culprit (apart from one ‘interesting’ rheumy, but I won’t talk about him.)
Again, I’ve always assumed that persistent swelling tends to suggest the need for aggressive treatment. Obviously you can’t relate every single relevant or possibly relevant detail in one post, but from what you say I think many of us would be yelling, begging, demanding, wheedling for biologics if we were in your position. Or at the very least having a damn good, assertive dialogue with the rheumy. And I think you’d do well to specifically ask to see the rheumatologist rather than the PA this time, given all that has happened.
Sybil’s was a great reply. Biologics really do have evidence for preventing and /or lessening Joint Damage in PsA. And if yelling, begging, demanding, and wheedling doesn’t work, then in the context of the above, a new Rheumy is worth considering.
I can’t add much to what Jen and Sybil have said, but I think I’d be really direct about your fears about progression. Make a list of past and present damage if you need to. And do mention the elbow issue: I’m guessing that’s PsA as well.
Ask what the most aggressive treatment is that he is prepared to prescribe given your ongoing history of damage and problems like swelling.
Doctors aren’t convinced that DMARDs like Plaquenil and MTX do much to stop disease progression, but there’s no doubt that Biologics do.
Go armed with your list, your questions and your request in writing.
Consider taking two copies: one for you, one for doc. That will give you some control over the consult, and hopefully drive the process in the right direction.
Sybil, Jen, and Seenie—
You guys have pretty much confirmed what I was thinking—that I need to demand more aggressive treatment. I’ve been scared of taking Biologics since my diagnosis, but I’m more scared of what other joints are going to fall apart. I wasn’t certain if I should go that route, but my gut was telling me to go for it. I think I just needed to hear it from you guys! I truly appreciate the input and support.
Oh–and my list of questions just gets longer by the day (ha). I will be demanding to see the Dr for certain.
Thanks too for giving me some hope that the progression can be stopped/slowed. I hadn’t had much luck finding that it any research yet. If Biologics are what I need for that to happen, then yeah–I want a Biologic!
I agree with the statement that changing med’s will not stop damage. When I was on Remicade after trying numerous other meds, that damage in my lower spine did not stop, only slowed down. I lost a total of 3 inches of height over a 5 year period, my tail bone has numerous fracures that cannot be fixed. But because of the Remicade I was able to at least enjoy a little of my life with only 30% pain. So don’t give up, but try to find something that will give you somewhat of a life. In mean time we will add you to our prayers.
I think the biologics may stop damage. And that they will very likely slow it down. I suspect that I would be disabled by now if I hadn’t started DMARDs and then biologics when I did. There were a lot of dark mutterings about my knees which were hugely swollen for ages, yet now they hardly merit a second look from rheumys and the degeneration or whatever the heck was going on in there would seem to have slowed to virtually nothing as opposed to galloping onwards. Each of us is different and therefore we’re likely to have somewhat different outcomes from aggressive treatment.
This is the correct attitude to take, as far as I am concerned. I know the patient literature for bio’s is terrifying. But if we wrote a copycat document on the possible known adverse effects of PsA, that would scare the pants off you as well.
Whether Bio’s slow damage or stop damage is a bit of an academic question: very slow is as good as stopped, as far as I am concerned. In four weeks I am going to the PsA Research Clinic in Toronto for my yearly check up. It’s been two years since my last set of x-rays (every joint in the body), so they will most likely do that again. It will be interesting to see what progression there has been. I’ve been on Humira for those two years, and Enbrel for a year before that. Previous to Enbrel (but on DMARDs), my hips went from “a bit of damage” to “totalled” in only 12 months. Yes, this next set of x-rays is going to be very interesting. And I will come out glowing with radioactivity. (Not!)
I’m not sure whether my next statement is supported by research, but it’s my impression that the people who respond best to the biologics are the ones who start before the disease gains momentum. Early and aggressive, as the researchers say. I may be off target there, but if I am, I’m sure that @tntlamb will set me straight. @Baklu, how long had you had PsA when you were finally put on Remicade?
Actually, In responders, biologics really can effectively “stop” damage by bringing it to a near standstill.
If you like reading journal articles to get the details, you could start with this one;
It was for Humira. Interestingly the study shows those on Humira with a slight reduction in radiographic damage. I’m not actually sure this particular aspect of the study is considered statistically significant (tntlamb is the guru on that).
There was also a really interesting study done on Remicade that showed that even for many of those who were symptomatic non-responders, radiographic damage was inhibited.
My appointment Tuesday wasn’t a bust, but wasn’t exactly good either. I could only see the PA and the thought is I still “might” have PsA…but I might not. The jury is still out.
The plan is 1) biopsy the lesion on my hip to see if it is/isn’t psoriasis. I’ve never had textbook psoriasis, but I get these scaly spots on my hips or arms every few months. Now that I have an active one again, my dermatologist is fitting me in tomorrow for a biopsy…2) another ultrasound of my hand/wrist on Friday to check for any swelling. Her exam showed I did have some tender points on 3 fingers, as it hurt more than when she usually palpates them, plus they were bothering me over the weekend which ups the chances she’ll see something…3) a complete recheck of anything and everything regarding blood work…4) stopping my Celebrex for 3 days before the ultrasound in case it’s making me look less swollen than I’d be without it…5) while waiting for all of this, she called in a 2-week round of steroids to see if we can get my knees under control and break the pain/swelling cycle. I can begin Friday after the ultrasound.
She was in agreement the Tennis Elbow could easily be PsA aggravating the tendon, and she agrees PsA could be the problem with my knees. However, without something more definitive, we can’t change the medication yet. It seems a medication change will require a lot more evidence of PsA. I’ve barely got enough to even justify the Plaquenil. If the biopsy comes back as psoriasis though—THEN we can get the medication change easily, and the diagnosis would finally be nailed down.
Last but not least, and please feel free to jump in if anyone can relate, but the subject of my hypermobile joints came up again. She thinks it’s still highly possible most of my joint issues (especially my knees!!!) are from being hypermobile, and I agree that 's some of it is. I’ve needed physical therapy off/on over the years for my back due to loose ligaments in my SI area (compounded by an auto accident 24 years ago when I was in college). My back/lumbar region is always happiest when I have MORE motion, which is one of the reasons I’ve worked on my flexibility so much over the years. The more motion in the joints I have, the better I feel…BUT—it wears the joints out faster. I’ve been told about my hypermobile knees from 4-5 therapists over the years too, plus heard the same about my shoulders a million times. So basically the PA (and my orthopedist today!) both said the speedy knee degeneration may simply be the hypermobility problem…and maybe PsA (if that’s what I have) isn’t really the cause of ALL of my knee problems.
Personally, it seems like there’s too many separate things going on with my body that might be to blame, and I may not get a good answer without more years of swelling/degeneration in joints other than my knees… or if I get that psoriasis biopsy to be positive. Again, time will tell.
Oh, gosh… back in the maybe/maybe not category… how frustrating for you!!! I do hope the ultrasound and biopsy help to nail it down for you… although PsA is definitely a problem to treat, at least there are treatment options for it, which is more than can be said for OA where pain meds and surgery seem to be about the only real options.
Just a thought… do you have ANY (even minor) pitting/ridging on your finger/toe nails… if so, do bring this to the attention of your dermatologist/rheumy/gp, as these can be from psoriasis and may help with diagnosis too.
Please do keep us informed of results as they come in!!!
Thanks for the reminder, janson. Unfortunately, I don’t have any pitting/ridging on my fingernails. The only thing odd about my toenails is they’ve always been soft, but no pitting or ridging. It’s not that I WANT something to be wrong, but yes, I’m tired of the “might/might not…”
I agree with you on the OA diagnosis and resulting surgeries. I’ve had 9 knee surgeries in 19 yrs (with an ankle bone spur surgery mixed in!!!) and know the replacement of the right is 5-7 yrs out----IF I’m lucky. I’m just fed up with surgeries and the toll they take on my family. I’m extremely independent, which doesn’t help. Plus, my son is only 11 and easily remembers the last 5 surgeries, as one was the first year of his preschool, another was when he was graduating kindergarten, then the last 3 involved his entire 3rd grade year. He’s a trooper about it, but the kid just wants us to be able to take a walk around the park or subdivision on occasion (ha)!! We are back to that NOW, and he wants to keep it that way. He even knows my physical therapist well after how many times he’s gone with me the last 20 months. All in all though, yes, time will tell.
Will be keeping fingers crossed for you!!! Any answers have to be a good thing at this stage… yes, I know what you mean about not WANTING anything to be wrong, but when we are suffering we hope “they” will get to the bottom of it, so 1) it has a name and 2) treatment can be started with a vengence… All in the hope of getting some improvement as soon as possible… there seems to be so much to put up with before we find some relief
And yes, it is difficult for kids to watch a parent (mum especially) suffer!!
Hi lisarockgirl4. I have hyper mobility, it has been commented on more and more often of late, the OT who’s working on my hands noticed it, a podiatrist noticed it and so did my last rheumy. The podiatrist had a student with her so I got the running commentary, she described me as a ‘very loose lady’ which I thought was an interesting way of putting it. She said that feet as damaged as mine would normally be stiff but mine aren’t because of the hypermobility. She also reckoned my joints might need to be very inflamed to show classic PsA stiffness, although in the past some joints, especially my knees, have been very stiff indeed.
I think you’re right that hyper mobility is detrimental to joints in various ways as time goes on. But as far as I know PsA does tend to affect joints that already have a bit of damage, even if it’s damage that we’ve never particularly noticed. I remember a few years back hyper mobility got a mention here and quite a few people here reported having fairly loose joints. I’m wondering whether it and PsA are often bedfellows.
@lisarockgirl4 and @Sybil The hypermobility thing and it’s possible connection to PsA is interesting to me. I was diagnosed with ligamentous laxity (hypermobile joints) when I was 17, peripheral and spinal. Hmmm… perhaps this is why I have very little “stiffness” in my painful joints… I do get a little stiff in both hips and ankles, but mostly maintain full range of motion in all others, despite pain and a slightly stiff sensation. I haven’t yet discussed the ligament thing with my rheumy… will try to bring that up with him at the next visit if I remember and time allows.
Thank you for bringing that to the fore at this time
I truly appreciate the input and support.