I can't shake off the cross and gloomy feelings that started after I saw the rheumy nurse yesterday morning, so I thought I'd come and let off some steam here...
I showed the nurse the rash that's spreading across my lower back, driving me crazy. "Oh, that's the Hydroxychloroquine", she said, "It often makes psoriasis worse. Just stop taking it". So why didn't they take me off it when I was diagnosed with PsA 6 weeks ago?!
I told her I'm worried about my feet, which still hurt a lot, although the swelling and pain in most of the rest of my body is much better since starting MTX. "There's probably already damage. Only surgery will help", she said. Oh great. Bl@&dy GREAT. (And yes, that IS sarcasm).
The last time I saw the rheumatologist himself, and he finally diagnosed PsA, he said "I haven't been happy since you told me you'd had a hip replacement so young. But now we know it's psoriatic arthritis, that explains everything!" I wasn't as happy about it as he was, funnily enough.
I have spent 4-5 years knowing there was something wrong with me, and trying to get doctors to take me seriously. I have suspected PsA since earthwitch and postle suggested it here last year... I have had to fight every step of the way, it feels like, and use all my assertion skills to push for tests that eventually 'proved' I was right. From not listening, to being off-hand about symptoms and the damage that's been done to me, they seem pretty dismissive. I realise they see 'people like us' every day and the novelty must've worn off, but I would like some acknowledgement that for me, and for each one of us who's diagnosed, this is a BIG DEAL and often quite difficult and shocking.
I'd just like one of them, one day, to say something like "This is a big change for you" or even "I'm sorry you weren't diagnosed sooner". I guess that's too much to hope for...
Written by
flow4
To view profiles and participate in discussions please or .
It just rankles doesn't it? Little words can do it, such as 'JUST stop taking it ..' And somehow a blase attitude doesn't inspire confidence. My rheumy doesn't take much notice of pain these days because Humira's working and my damaged joints don't yet require surgery, if they ever will. He says 'inflammation' and moves on. I know he's right, if it isn't too bad then there's nothing more they can do right now. If I said the pain WAS bad I think it would be a different matter. I don't get molly-coddled but there's always thought & action if needs be and I do get the impression that they take PsA seriously.
I think people who have sustained serious damage due to undiagnosed disease deserve and need special treatment. At the very least some recognition of how difficult it is to process that what has happened might possibly have been avoided. And, presumably, extra-vigilant care to ensure that maximum disease control is achieved ASAP. A sense of urgency, sensitivity. You might have to keep fighting to some extent. I wish you didn't have to 'cos frankly you've been through enough.
Yes, it does rankle, postle! 4 months ago, this same rheumy was telling me I 'just' had osteo and fibromyalgia... Then last month he casually suggests my hip replacement 2 years ago was probably due to long-term damage from uncontrolled PsA! I'm torn between feeling thankful I'm finally diagnosed and feeling furious that it has taken so long! It really messes with your head sometimes, doesn't it.
I have been referred for a second opinion - and better care, I hope - at a specialist centre; but there's apparently a 12 week waiting list, and I'm 5 weeks down it.
Oh I've just seen phillylou's priceless suggestion .... thank goodness you are a tea bag!
It beggars belief doesn't it?! As has already been said it's the "just" that rankles. She can't second guess about your feet needing surgery either, surely rather than just blurting that out she should have just ordered x rays or other imaging & not make an assumption & leaving you feeling as you now are about the appointment. I've experienced both, Consultants who treat you as if you're the only patient they have & award time & empathy for your concerns & others to whom you're just the next one of many they'll see that day & clock watch, not that I take them up on it! I know which I prefer & what I'd wish for everyone.
It's especially galling because 12 months ago the orthopaedic surgeon and I together ruled out surgery, because 4 different procedures are needed on my feet to fix them, and there's only a 50:50 chance of success, with significant risks, including surgery failing and my losing a foot or two... Crappy orthotics in my shoes are basically all that I'm offered instead...
I guess pushing medics isn't over yet. If the DMARDs aren't working (which they often don't for spondyloarthritis, then the next thing to get pushy about is probably being considered for antitnfs - and don't let them assess you using the RA criteria either as that set of criteria would be highly unlikely to get you considered - PsA has completely different criteria.
I think you're right, earthwitch. It's hard to know whether the DMARDs are working yet, because I've only been on MTX for 4-5 weeks (5th dose today), with Hydroxy for just 3 months before that. I do feel better than I have for years, but I feel a long way from well. And if I have permanent damage already, I'm never going to be 'fixed', am I, and it's hard to know how well I can actually expect to feel. I don't know how they'll assess progress at all, to be honest, since the rheumy was dismissive of me at first and there's no baseline... (I did point that out to them: at first they said they'd do a retrospective baseline using DAS, then they said there was no point... O.o )
I guess I'm hoping that when I finally get to the centre of excellence, they'll be more proactive, and more *aware*...
Oh darling i know what your saying as i feel sometimes my medics don't sem to care. I know they get a lot of people like me and they get so overwhelmed by it all,but just onc it would be nic if they showed some compassion.xxxx
What an awful experience you have had. It really is the luck of the draw as to how you are treated in your clinic.....but it shouldn't be!!! Not one of us has asked to be given this awful disease to contend with and being treated disrespectfully just adds to the pain and stress. If people in any profession have to be offhand, rude and unsympathetic I would suggest that they are in the wrong job. A word to professionals.... I hope that if you are reading this will think about how your words, attitudes and lack of thought and consideration can make someone's life so much more difficult than it needs to be. I understand that you see hundreds of patients a week and you may become a bit blasé about it but imagine how you would feel if it were your mother, sister etc. It costs nothing and doesn't take any longer to be considerate. Love and hugs Flow 4 x
Thank you Sheila. The thing is, it can be so subtle sometimes. The rheumy himself has all the social skills of a tasseled bookcase, but the nurses are perfectly pleasant and kind - not rude or unsympathetic, but simply ignorant or unthinking. I don't think they understand how chronic diseases can mess with our heads as well as our bodies. And of course, there's no continuity of care, so no one has followed me through this 5 year journey to diagnosis, and no one has seen how difficult it has been, and no one is responsible for how long it has taken to get to this point...
I've said it before, flow, I'm so sorry this has happened to you. Your story very closely parallels mine, and even now, five years after diagnosis (20 years after onset) I am still furious about the way I was blown off and ignored for years. I'm older than you are, and I had 2 TKRs before I was diagnosed, and like you, foot damage as well. To their credit, though, the rheumatologists I saw had me diagnosed with PsA in the first ten minutes. If I could do one thing over, I would have insisted on more aggressive treatment from the get-go. Instead, I wanted to trust the rheumy. I'm glad that you are in a frame of mind to do advocate for yourself, and to do whatever it takes to get the best help that is available.
All of that said, unfortunately, your new hip, and your foot damage is spilled milk under the bridge. That cannot be changed, and I'm damned angry about that on both our parts. Direct that anger, though, into advocating for yourself and trying to empower others to advocate for themselves. Then, at least, your losses won't have been in complete vain.
As for why they didn't take you off the HCQ when you were diagnosed, they have actually done you a favour: you now have a "failed" DMARD on your record, which means that you are one step closer to aggressive therapy. Unfortunate that you had to put up with the psoriasis.
Have you written a succinct chronology leading up to your diagnosis? That may be as close to the mythical "continuity of care" that you are going to get. When you meet your next rheumatologist, a copy of that for the file could come in very handy.
Finally, here's something that will probably make you as angry as it makes me. As you know, I have severe PsA. A rheumatologist (a researcher in a university PsA clinic) based on what I was able to tell her, said that she is sure that my deceased mother had PsA as well. Now my sister is struggling with terrible fatigue, depression, and body and joint pain severe enough to have required non-stop prescription NSAID treatment for the last ten years. She has some "osteo" knee damage. Even with a sister suffering severe disease, a mother who had PsA, and begging on the part of my sister, her GP refuses to refer her to rheumatology because there is nothing in her blood work that would suggest inflammatory disease. Just. Go. Figure. I resorted to making personal contact with a rheumatologist who I had met in the research clinic to get her opinion on whether a referral might be justified in my sister's case. Her message? "Get your sister's GP to refer her to me asap." To achieve that took a personal contact, outside official channels. I'm angry all over again.
Thanks Seenie. I haven't quite written a chronology because I can't get all the dates straight, but I have written a list of symptoms with approx date of onset. I gave that to my GP who sent it, along with a very supportive letter, to the centre of excellence where I've been referred for a second opinion.
The family thing is awful, isn't it. My dad had diagnoses of RA and psoriasis, and IBS and 'dry-eye' too, so it doesn't take a genius to put two and two (and two and two) together... Worse, I worry about my kids, who are young adults now, and both complain of joint pain already... My eldest has dropped arches and ongoing foot/knee pain; my youngest has very dry skin and sore hands. I'm reluctant to try to get either of them rheumy appointments, because I know for sure they'll be dismissed without more to go on than that; but when I finally get to the specialist centre, I plan to ask there...
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
That cannot be changed, and I'm damned angry about that on both our parts. Direct that anger, though, into advocating for yourself and trying to empower others to advocate for themselves. Then, at least, your losses won't have been in complete vain. 
Medication 
Red hot face. Sometimes it's puffy and looks swollen. Really getting me down.
Feet so cold and painful!
So Honoured to be Best Man, Mattcass
Medication side effects or infection?
