Hi all. I'm currently looking for a new rheumy having lost confidence in the current one. On my last visit, nearly 2 months ago, he got really quite angry with me & ranted at me for 20 minutes or more. The next day his secretary phoned to say he felt that the consultation hadn't gone too well(!) and asked if I'd like to see him again for an 'informal chat'. Off I trekked 2 weeks later, hoping for possibly a little bit of an apology & a fresh start, only for him to tell me that I'd taken up 45 minutes of his time & to go on about how I didn't understand my disease.
What sparked his anger at the consultation seemed to be me mentioning that I don't want any more joint damage. At the time of diagnosis in June last year my knees had been swollen for six months & x-rays showed significant damage which then got worse over the next 6 months or so. My rheumy used to refer to the damage as 'secondary osteoarthritis' and blamed it on quad failure. As it happens a physio I saw reckoned that my quads were fine but, anyway, what mattered more to me than the cause of the damage was that up until that last consultation my inflammatory arthritis (most likely PsA - rheumy says it doesn't matter) took centre stage. Now it seems my rheumy wants to raise the profile of osteoarthritis, he's dropped the 'secondary' bit & seems to claim that it's always been a big part of my joint problems despite the fact that it's never been mentioned in follow up letters or in any other context other than my knees before.
If my joints are affected by osteoarthritis as well as inflammatory arthritis then so be it but I have to say I'm a little suspicious and wonder whether anyone else has had a similar experience? My thumbs and big toes also show 'degenerative changes' but, just as in my knees, it's the left thumb that has been swollen with inflammatory arthritis for nearly a year that is most damaged and most painful. Seems to me that there's a link between the two conditions and that 'secondary osteoarthritis' always was a better description of the damage.
I'm doing really well right now, but at the last but one consultation things weren't so good & at that time my rheumy gave me the impression that things were moving in the direction of anti-tnfs. My impression is that by bandying the word 'osteoarthritis' around (and that's as good as it gets - his rant at me was wildly unstructured and unhelpful) he's downplaying my inflammatory disease. He shows no sign whatsoever of referring me to anyone else about the oa or of caring about how the damage affects me.
I probably haven't adequately conveyed the situation ..... I feel very uncomfortable being so critical of my rheumy and this is quite long enough but both the consultation and the informal chat were quite bizarre. Any thoughts on what I have managed to convey will be very welcome. I should add that I'm in the UK.
I may not be the best qualified to answer this but here is my best guess: I have seen articles saying OA leads to PsA and others that OA follows Psa. My own take on this is where I know I had OA is now PsA. This makes sense to me due to something called the Koeppner Syndrome (have I spelled that right?) which says P can appear where ever the skin is injured and PsA wherever a joint is injured. Makes sense to me. Anyone else?
My opinion is....whether he is right or wrong I would not stay with a dr that rants at me or tells me I wasted 45 minutes of his time.
I know that the PsA first started in the knee that I already had osteoarthritis in and then progressed on to other joints. From my understanding what usually makes it the secondary diagnosis is that it is not the one to be most concerned about. The inflammation of PsA causes most of the joint damage. osteoarthritis is caused by wear and tear over time.
Personally I'd look for another Dr who can explain what is going on without getting angry at you.
Yes I think that might have happened to me. I was in a car accident last year and my inflammation is MUCH WORSE now. I wish I had more to say but, that's all I know.
michael in vermont said:
I may not be the best qualified to answer this but here is my best guess: I have seen articles saying OA leads to PsA and others that OA follows Psa. My own take on this is where I know I had OA is now PsA. This makes sense to me due to something called the Koeppner Syndrome (have I spelled that right?) which says P can appear where ever the skin is injured and PsA wherever a joint is injured. Makes sense to me. Anyone else?
Now that we have a correct spelling thanks to Amiga it should be easier.
I am dim on my best days! But I would fire his ass. This disease is tough enough without that. There are better Rheumys in your future. I just know it <3.
I'm curious does he pay for them??? I'm dead serious, in the USA we have some HMO's where that simply is the case (more or less) the contracted specialist is responsible for treatment. These operations own their own formularies. Kaisar is one. Its getting worse.
In any event why something happens (quads or not) is less important than the what. OA can and does overtake PsA. Its pretty easy to tell the difference. The treatment for the two is different (much different) BUT if they coexist it doesn't mean they don't both need treated. If he doesn't get it or can't explain it. Primary or secondary who cares It hurts and you are falling apart. Fire him. sybil said:
....... I think what happened might just have something to do with money, it usually does. With a firm PsA diagnosis I'd probably qualify for Biologics & increasingly that's the most obvious diagnosis. If he'd bothered to ask I'd have told him that I'd rather not go for Biologics as Methotrexate and Sulfasalazine seem to be doing the trick just now.
How lovely that he called you back in to yell at you some more.
One rheumatologist I saw, after all the labs came back normal, decided that my only problem was osteo in the PIP (middle) joints of my hands, even though those were the only joints that didn't hurt, weren't swollen, and my x-rays showed narrowing of the joint spaces all through my hands, not present the previous year. Pain, swelling, and limited range of motion in several other joints just didn't exist. I was in my mid-fifties with no family history of osteo.
You can't win with someone like this. Is there another one you can go to?
Good for you, they deserve shredding. Please get a copy of The Facts: Psoriatic Arthritis by Dafna Gladma and Vinod Chandran. It is the BEST for truly understanding PsA and a lot of us on here have it. I predict very quickly you will know more than your "expert". You are all ready well on your way. "So who doesn't understand the disease now sir?" HAH!
I got mine on Amazon and keep ot close.
One thought to put in your ear. DMARDs have not been shown to slow progression of disease, only biologics do that. Lots of us take both. I am on Remicade and inject myself with mtx. I use it to help prevent my body from creating antibodies to the Remicade ( which is the fourth biologic I have used- they have all stopped working after about a year each due to my overly enthusiastic immune system!) and to help my hands, feet and elbows and knees. The biologics seem to help my spine and hips feel better the mtx does the rest. Just saying a word to the wise.
How can one tell if they have PsA with OA, RA, or both??
tntlamb said:
I'm curious does he pay for them??? I'm dead serious, in the USA we have some HMO's where that simply is the case (more or less) the contracted specialist is responsible for treatment. These operations own their own formularies. Kaisar is one. Its getting worse.
In any event why something happens (quads or not) is less important than the what. OA can and does overtake PsA. Its pretty easy to tell the difference. The treatment for the two is different (much different) BUT if they coexist it doesn't mean they don't both need treated. If he doesn't get it or can't explain it. Primary or secondary who cares It hurts and you are falling apart. Fire him. sybil said:
....... I think what happened might just have something to do with money, it usually does. With a firm PsA diagnosis I'd probably qualify for Biologics & increasingly that's the most obvious diagnosis. If he'd bothered to ask I'd have told him that I'd rather not go for Biologics as Methotrexate and Sulfasalazine seem to be doing the trick just now.
Sibyl, I am so sorry that any of this happened to you. If I had been there, I would have stuck out my tongue at him. Maybe that would have shocked him out of his childish behavior.
I have had a rheumy flip out too. Unfortunately, it’s not all that unusual, but I wish it was. Some doctors belong in the lab, not out in the world making it more miserable, one patient at a time.
On the bright side, you are a smart patient and acted in your best interest by getting the process started in order to get a new rheumatologist and to have your records corrected. I always say, “You are your best advocate”, and you are certainly doing that. So, set a limit on how long you get to be angry at Dr. Not-a-Grownup, and move on by planning your new patient appointment with the next specialist. There ARE good doctors out there, and I’m confident you will find one.
I want to echo Michael’s response. Dmards have not been show to slow the progression of PsA. So far, only the biologic drugs have been proven to do that. If you are really worried about disease progression, that is where you want the doctor to go. The latest evidence shows that early, aggressive treatment with biologic drugs is the best course of treatment.
Thank you so much! I think I just have PsA right now.. Mine might be RA but, if my left knee hurts my right doesn't hurt. I have inflammation in both knees, both wrists, both ankles, but they are never at the same time. Only my right shoulder hurts. I would say my right wrist hurts way more than my left wrist. I have had xrays, MRIs, and a full body catscan. So far my cartilidge is still there but, that was all done before my car accident. The full body cat scan was done after my car accident. I definitely need them to check for OA just in case since it's been over a year and I could have the Koebner Phenomenon going on from the car accident.