I had a bad appointment recently with my rheumatologist. Regular 6 month checkup. It was my plan to talk to her about Humira. It’s my second biologic and also the second tnf inhibitor. I’ve been on it for five years, taking it every week, and have been taking a dmard with it most of that time.
Back to my appointment. I’ve been seeing this rheumie for five years since my first one retired. When I expressed that the Humira wasn’t working, she went in a few different directions all at once, while also reassuring me that she would make sure that I was cared for to the best of her ability. (As an aside I will no longer permit our appointments to be recorded).
I wound up crying, which is very uncharacteristic. She was talking about fibromyalgia, that these meds are risky if they’re not needed, and hypermobility (which we’ve never discussed). We picked the currently most painful joint outside of my knees, to get advanced imaging on. I had expressed that I wanted to try a new biologic to try to avoid cubital tunnel releases and the other wrist carpal tunnel release. She was questioning whether the biologic would work bc she wasn’t feeling inflammation.
Well. . . The MRI didn’t show a ton of inflammation but it does show damage related to inflammation. Two partial tears, another tendon that is thinning, and of course, the ulnar nerve damage. I just got a message from her via the portal confirming the radiology report.
I’m pretty peeved about the whole thing, but not enough to deal with getting a new rheumatologist. Sorry for the rant
What is up with Rheumys these days? I feel the same about mine. Did they get some new journal article that has them doubting all the info they had prior? I do hope she listens to you and gets you sorted.
My last Rheumie was right out of school, only saw him a couple of times but that’s how he started out (my former one left her practice). Rinvoq is a pretty big drug he said, then he started talking about fibro. Fortunately this guy was 5 hours away so when a new one opened shop here in my city I managed to get in to see him.
He started out the same way - but after the initial appointment and few issues he has certainly changed his tune. In fact, we’ve added a lower dose of methotrexate to try and keep the Rinvoq working (pretty sure it’s on it’s way out). His concern is that there are only so many drugs to try and (IMHO) the rheumatologist that left her practice switched things up too fast - 5 drugs in like 3 years.
Hypermobility was mentioned too - but I think I’m just flexible (I do yoga). Same research paper ? Fibro and PsA can co-exist and sometimes I wonder if I have that too - we’ve probably all be burned as that being our one and only diagnosis on our way to PsA…
I have a swollen foot right now and I was so happy I got to see him when it was actually swollen…sounds so silly …but when you had your MRI maybe your inflammation was behaving for the moment, though the damage says a lot. I hope you can get some better understanding from her in the future.
Well that is a bit strange! My last rheumy appointment didn’t go well either. I was visibly limping on one leg and told her that it was just another flare but she insisted on osteoarthritis, ordered xrays of both knees and an MRI of the other. (I don’t have the results) Five days after seeing her, my knee is fine, my finger and hand pain substantially reduced and my headaches almost gone. They all come on together but she said headaches were not a part of PsA and yup, suggested fibromyalgia because she wasn’t feeling inflammation though I was in a flare. I really hate it when I feel that I’m not believed when I point things out. The rheumy sees me three times a year for 20 minutes…I live with this 24/7 since 2018. Stoney, take @Poo_therapy with you for your next appointment, she would be in your corner! Look for her website coming soon: “PsA Patient Advocate Inc.” Sorry to hear of your appointment blues!
It’s way too early for me to say anything, but I have a suspicion that some of my headaches are related to neck pain and I’m hopeful that the rinvoq has a positive impact on my headaches
I understand that it’s possible that fibromyalgia and inflammatory arthritis, but I also think it’s a ridiculous time to talk about it when I’m suggesting that the meds are actually failing
It helps that in the UK we have a protocol for diagnosing and treating PsA which is published so every PsA patient can access it if they want to.That also lists all the meds presently approved for treating PsA and their dosages too. Hence the edict on no hydroxy and humira only been given every 14 days amongst other stuff. It also helps we have an ability to complain about bad or stupid rheumys too. So as patients we can heap the pressure on to have the rhuemy at least follow the correct protocol.
Sadly fibro can exist alongside PsA but not as much as the rheumys want us to believe. Inflamed PsA which ends up body wide can mimic PsA significantly given the extent of inflammation we’re suffering from. However there is some sort of physical exam which can highlight the likihood of the symptoms being fibro - I’m not sure what it is as I’ve never had the suggestion of fibro given to me as yet, but I do know other patients who properly feel they have both given the results of that physical exam.
And sadly PsA meds do fail us regularly. They either don’t work or stop working. Unlike RA patients our disease is harder to treat too. So if you have a rheumy who spends their clinic time treating RA patients who tend to react much more positively and for longer to their meds, then you can ‘kind of’ (I’m being generous here!) understand their confusion.
The remaining conclusion is of course is to keep ‘encouraging’ your rheumy to up their understanding of PsA though. It remains a far tougher disease on the patient and indeed a far tougher disease to treat optimally too.
there are of course mechanisms to complain here as well, and ultimately, if I’m super unhappy I can switch doctors. It’s not my favorite thing to do for a whole host of reasons. Generally when I’ve been unhappy with the doctor, it’s been very early on in the relationship and easy too switch to someone else.
I know years ago we had a diagram up here that showed the tender points for the fibromyalgia exam and how it overlapped onto the enthesis.
Fibromyalgia and psoriatic arthritis certainly can and do overlap. But I also hear way too many people being diagnosed with fibromyalgia with clearly inflamed joints, so there’s that too.
Yeah, I want to take Poo Therapy to my next appointment too.
I had read about the overlap of fibro tender points being over enthesis too recently. Ugh. It took me 5 rheumies to get diagnosed, partly due to moving and seeing some of them in a different province (one’s records apparently don’t get forwarded for appointments, something I hadn’t realized at first). There was one who, after travelling for 6 hours and waiting in the waiting room for almost another hour, poked me and asked a few questions and then told me I had fibro - go see your GP for meds.
Of course we actually live in our bodies and know something more is going on.
Here comes the whole advocate for yourself diatribe…Stoney, sounds like you already are but are just fed up with the whole process - that of getting answers and just having to deal with all this in the first place. I hope your next appointment is better.
So my issue is inflammation in my IT band where it connects to my knee (enthesitis). It causes the muscle to get very tight. It is enlarged and swollen. Stretching does help but I can’t stand up very long. Therefore exercising more is hard to do.
I have seen my rheumy three times about this issue. First time he ordered an MRI and I did not get it done. I felt it was a lot of extra money for something I felt was not related to spinal pinching. After the second visit a few months later he made it clear that he would not be able to help unless I got the MRI. So I did. It came back all clear, no issues. I saw him again and he claims its neurological since my Humria numbers were fine.
After that last visit I saw my Orthopedic doctor and he said all was well but I needed some physical therapy to work out the muscle. The PT does help but the IT Band stays inflamed. I feel I need to add MTX back into my regime or go off the Humira.
I see my Rheumy again at the end of the year. I am considering a second opinion. My husband is really pushing for a new doctor. He sees everything from the outside and knows I am not being handled properly. Maybe a fresh set of eyes could help. I just hate to start all over again with someone else.
What do you mean ‘your Humira numbers’ are OK? Are you talking about antibody tests? If so there is no antibody test yet around on a global basis that’s accurate as regards biologics, especially Humira and Enbrel and all their biosimilars. They all give far too many false negatives and false positives to be at all useful. Get a second opinion, it doesn’t always mean starting over with someone else, it can boot your present rheumy into better care though. Hugs.
Yes, I think so. To test if I have developed antibodies to Humira. Hmmm, I did not know that. That makes me wonder so much about my current condition. I was assuming the Humira was working and the issues I was having were my fault in some way. Something I wasn’t doing right. Honestly its been a year since my leg pain has worsened and I still haven’t found a doctor to help me.
You are right. A second opinion doesn’t mean starting over. I will. I have a recommendation from my OBGYN (she has RA) so I am going to make an appointment with her doctor. Thanks!
