I like my rheumy, however, he works for a healthcare company/conglemerate and I am unable to get an appointment when I have a critical issue, flare up, biologic fails etc.
Does anyone else have this problem?
This happened over a week ago when I had debilitating fatigue for days and couldn’t work. I called for an appointment and they said I had to wait a month. I did e-mail my rheumy and his response wasn’t helpful nor did he try to get me an earlier appointment.
So, I started myself on prednisone as I have before during episodes like this and it is working. I made an appointment with a new Rheumy for Feb 23rd - yay !
I think this is a perpetual problem. I have a few approaches to handle it. First I have a rheumy AND a primary care physician. In a pinch my PCP will handle anything acute that crops up if the rheumy is non-responsive. Also, I heavily utilize my rheumy’s email system. If that fails I bug the crap out of his nurses whilst also projectile apology vomiting all over myself. This often gets some kind of (generally positive) response.
I also keep on hand (with my rheumy’s blessing) prescriptions for the kinds of things a PsA-suffering gal might need, like antibiotics (he only lets me take one kind so that’s easy enough) and muscle relaxants (because when I’m flaring I tend to put my back out–wheeeee!). I’m interesting to hear what others do.
I’ve only wanted to see my reumathologist quickly once about a month ago… they gave me an appointment for 3 weeks later… I went to my primary care doctor and cried (not on purpose) and he called my reumathologist (my doc was pleading pretty hard took quite a while…) who prescribed different pain meds over the phone and got me an appointment next Monday (it was Friday afternoon)
Doctors always act like it’s really easy to get in touch with them… if anything is wrong just call! And then you do and you get a glorified typist on the phone, who thinks just because she sees a doctor every day she knows everything, who will block you getting any actual help…
I guess I’ve never really considered it’s his role to deal with emergencies, which is a bit of a consequence how our system works in Australia I think, so I’ve never really tried. One of the bonuses of my Rhuemy is he will answer simple questions (there’s been chicken pox at my kindy - do I stop taking my Humira?) on the phone. I call, leave a message with his receptionist, and he calls back with an answer that day. He will also call me to have a short discussion on a result if it needs further action (eg he needed to refer me to someone else, so he just called me and sent the referral directly to the other doc). This works well partly because his receptionist is so knowledgable.
He also gives me plenty of scripts for steroids (self managed), and here in Aus we can still get mild codeine contacting pain medication over the counter, and for anything else I go to the GP (PCP).
Lol, I’m rather thinking I would have a problem at the moment.
Last rheumy department I attended had a pretty good hotline, it was only open one hour a day & persistence was required to get through, but the couple of times I used it I got a knowledgeable and helpful response from the rheumy nurse who would also consult the rheumatologist if necessary and ring back. I think it’s difficult to get ‘sudden need’ appointments with rheumatologists here, as Jen reports about Australia, at best appointments are brought forward I think.
Glad you’ve got a new rheumy Frances. I’m picking up that you’re on the case at the moment in terms of pushing for better care, seeking more answers. I realise you’ve had / have one hell of a struggle with fatigue, it’ll be wonderful if you can find a rheumy who’ll really work on that with you.
The new rheumy I saw today completely blew off my debilitating fatigue. She refused to believe there is any connection between my PsA and fatigue and would not prescribe me a biologic. She did prescribe an increase in MTX from .2ml injection/week to .5ml.
Meanwhile, I’m taking prednisone to function and have EXTREME anxiety because I feel no one is treating me. I don’t know how I’m going to work and get any normal daily activities completed.
Oh how frustrating. Blew off your fatigue? I do not understand this. Fatigue was one of my worst symptoms, and certainly more difficult for me to deal with than pain.
One of my ways of getting hold of a doctor who I think is, or may be, unresponsive is to send a fax. That gets their attention because it bypasses the “glorified typist” (ha ha ha Cynthia) and put it in writing in front of the doc. Kind of makes them responsible.
I think it’s important to have a PCP who can deal with things when you can’t see the rheumie. And I also have a supply of remedies at hand to tide me over when the bad stuff happens (as it inevitably does) on a Friday afternoon.
I’m okay with being told that there are some symptoms we have that may be resistant to treatment. And that we have to ensure we’re doing everything we can to combat symptoms. But being told that black is white is a whole different kettle of fish.
Frances, take a deep breath. You will get by, somehow, you’ve managed so far. Anxiety’s an enemy, look back at all the times you’ve got through and focus on the resilience you’ve demonstrated. Then there’s the fight back … there must be another doctor who will acknowledge the reality of PsA fatigue. Who prescribes the prednisone? Presumably they agree that you need it to get by and therefore that the fatigue is a real issue for you, I’d have thought that any doctor worth their salt would be keen to get you off it.
I’ve got a feeling this might be the wrong time for such advice. But I never know what to do except to tell anxiety it’s not going to take over and then to look for a way forward.
Thanks for taking the time to reply Sybil - I appreciate your support. I did get an appointment today with a doc to help with my anxiety and depression.
I’m so sorry your fatigue was blown off. I’m not sure how some of these Rhuemy’s are getting an understanding on what most impacts our quality of life… but it appears it isn’t from us!
And whilst the pred works in the short term, it’s like making a deal with the devil in the long…
Just a thought though, one of the main factors that seemed to prompt my Rheumy to change in medication was a DEXA (bone density) scan showing all that pred had wrecked my bones at only age 37. Have you been for one of those recently to check the pred isn’t giving you side effects you can’t see? (Which I should hasten to add are eminently reversible once you get off regular pred, and get meds that work that help you to do weight bearing exercise - but they can be a great medical reason to get those meds).
Thanks for your advice Seenie - I did e-mail my rheumy back and forth about the debilitating fatigue and he said he would discuss prescribing a biologic at my next visit. He was not however, making any effort to fit me in to an earlier appointment so I have to wait a month - which will be March 9th.
I understand the both rheumys confusion - I have absolutely no arthritis symptoms - just the fatigue. No joint pain, stiffness or any pain in my body. It’s the best I’ve ever felt, except for the fatigue. I think I’m an odd case. However, my rheumy did tell me a while back that he had another PsA patient who only presented with debilitating fatigue and very minor arthritis issues.
Waiting a month is certainly not ideal, as that much longer with the fatigue cannot be in any way pleasant, but at the very least it appears that your regular rheum is open to getting you on the best care possible.
I’m glad you seem to be getting more empathetic treatment from you new rheum, Frances.
I remember you had a hip replacement a while back. Was that PsA-related?
Well then there’s not much question about whether you’ve got PsA, is there? Maybe your joints aren’t inflamed right now, but they have been in the past, and your fatigue would suggest that you’re most certainly not in a glorious remission!
Hope this all goes well with the new rheum!
Best wishes
S
sorry for all the body blows you’ve been dealt.