Of course symptoms can progress and change quickly! Lots of people here will tell you about how they have woken up with a body that has seized up. And damage can progress quickly too. Really … your friend Dr.Anonymous needs to brush up on her PsA. Maybe you could get her a copy of the Gladman & Chandran book I recommend in “Book Reviews” above. (I gifted my GP with an autographed copy … haven’t received a thank you note yet, LOL!)
You did the right thing, Maemae. I hope the Humira is a good fit for you. If it isn’t, there are several other arrows in the quiver.
At one point I told her I had brain fog/fatigue to which she said "Brain fog isn't a PSA thing." We were discussing bone marrow edema and she looked puzzled when I said I'd read that's a hallmark finding with PSA. I said "You know what, whatever, I'll print the articles and bring them Friday."
I'll look at that book now!
Oh for pete’s sake … don’t get me going. That is a wonderful book. The kindle version is a bargain. If you don’t have a kindle, you can get free Kindle software for your PC.
But to give your rheumie the benefit of the doubt: PsA isn’t that common, and very few rheumatologists have a lot of experience with it.
Sorry you had such an upsetting app. But so pleased you’re getting treatment sorted now …well done you! 
“LIKE”
nym said:
What Seenie said! (We really need to be able to like individual posts! LOL)
This is an exciting time for you. You are close to the help you need!!! Be prepared for your reumy visit by asking him if he intends to use biologics ,steroids or anti inflammatory medication or a methotrexate type drug. If you have a lot of family you may choose to avoid the steroids as they have the same affect as roid rage if taken for more than a few days and can make your psoriasis come back worse according to my dermatologist. Check with your insurance company before you go and ask what medications they will cover. Biologics like Humira are not covered by most insurance companies because they can cost up to 60,000.00 a yer.
Hope you are feeling awesome and chasing your boys around with lots more energy:) Good luck!
Congrats! I owned a restaurant and one day woke up and every joint in my body was killing me. Within several weeks my Internist saw me, ran test, x-rays and determined I may have RA. He aggressively treated the pain with large amounts of prednisone and other meds to relieve the pain and referred me to my current Rheumy. I could not imagine going through that pain for the three months until I got to see my Rheumy.
I'm currently blessed with two great doctors. Turned out the be PsA and my psoriasis didn't show up for several years. I'm about to start Remicade Thursday and hope this biologic works. Humira worked so well I went off of it because I thought I hit a never ending remission...dumb mistake.
Best of luck to you and ride whatever pain relief wave that comes your way via your Rheumy. I have never had a problem with my insurance company covering any of my biologics, all were treated as co-pays. I have used Humira and Simponi, which never worked for me. Remicade is very expensive, but my insurance company is paying 100%, last year they told me they would cover only 75%.
Well wouldn't you know it, the doc and the office staff apparently don't communicate so they do NOT have the Humira for me to start tomorrow.
I seriously already considered seeking a different Rheumy, b/c of her crappy bedside manner. What do I do? Just keep with this one until I get the Humira going?
I DO NOT WANT to have to go through my whole life history yet again with a new doc. We move a lot I'm having to do that all the time anyway. UGH.
Short term, I think you should stick with the old Rheumy until the Humira is going. Then, long t.erm, find yourself another one. I'm assuming they will have the Humira in the office in the next little while ... right?
No idea. Their phone only accepts calls, can't make calls it seems =/ I've been calling since yesterday to make sure there wasn't anything I needed to do on "my part" insurance etc.....
Dear Maemae,
You cannot live on your Reumy's schedule and you do not care for her so you seriously need to consider these few things. First is there a study for Humira in your area you can enter? Second does her bedside manner put you off or do you feel she isn't knowledgeable enough about your disease. Just cause she's a reumy doesn't mean she knows PsA.
This is your life and you only have the one. You can't wait for her office if you have waited a reasonable time already. Did you ask if your insurance even covers this drug. Are there other options for you like a really good anti inflammatory. Cause the Humira always looks really good to first time users but might not be so terrific. I know for sure that Elli Lily is doing a study involving a brand new biologic. Check out the web site or contact a group of arthritis doctors practicing together,they can usually get you in faster but it's always going to be at least six weeks waiting, while your life gos on. Good Luck kiddo. meantime keep up on your anti inflammatories!
Thanks crazy ;p I’m a “retired” RN and don’t feel like she’s knowledgable on PSA. I wished I’d have asked her what her patient demographics look like. In other words maybe she has limited patients dealing with this, maybe her specialty is RA or other.
Anyway regardless I’ve had a year of hurting and alternative treatments and PT and blah blah blah. I’m at my breaking point, y’all may see a news headline “mother of three walks in doc office and demands a shot of SOMETHING to help her function!”
Sorry if I missed this, but did you get your approval for Humira? If you haven’t, it may take several weeks. Humira is t2 - t3 biologic and isn’t typical given as first round biologic for PsA. There are other cheaper biologics that they harass you to try first. If you have the approval, you might have to fight with the mail order pharmacy. Any decent rhumy is going to have a few samples on file to give to patients that are new to the drug. The loading dose is not absolutely necessary, so even one shot should do.
Yes, we have good insurance thankfully. One benefit of working for Uncle Sam ;) I went with Humira b/c the dermatologist I saw (who sees many PSA patients) said he liked that route for me. He said "You're a young healthy active mom. I think Humira would work great for you." He liked the every other week and what he's seen from his patients. I like my DERM better than my RHEUM wonder if insurance would just let me see him?! ;p
Last week, after we confirmed PSA, she told me to come by for a sample Friday (tomorrow) while my insurance was processing. No one contacted me, knowing how this works, I started calling them. "We'll call you back".....
Meanwhile I'm hard at work. Doing an anti-inflammatory diet, haven't had caffeine, refined sugar, gluten, dairy and some other stuff for 2 weeks. (This is coming from a mac-n-cheese/coffee/sugar-aholic) Stretching and resting when I can. I do everything I need to, just can't do much extra. But I push on, because my children are my everything. And mommy is theirs.
Be careful that's exactly how I got my ticket straight to the Adult Geriatric Psych Unit. last year. I said if my doc didn't do something soon I might have to get very angry. Opps :) I know exactly how you feel , Hang in there you can do this thing. You are strong.
Maemae said:
Thanks crazy ;p I'm a "retired" RN and don't feel like she's knowledgable on PSA. I wished I'd have asked her what her patient demographics look like. In other words maybe she has limited patients dealing with this, maybe her specialty is RA or other.
Anyway regardless I've had a year of hurting and alternative treatments and PT and blah blah blah. I'm at my breaking point, y'all may see a news headline "mother of three walks in doc office and demands a shot of SOMETHING to help her function!"
They should be able to get it overnight. Specialty pharmacies work quickly, even if your doc doesn’t.
Maemae said:
No idea. Their phone only accepts calls, can’t make calls it seems =/ I’ve been calling since yesterday to make sure there wasn’t anything I needed to do on “my part” insurance etc…
OH. MY. WORD. Seriously the SECOND I am all set on Humira I am switching docs.
Office called back finally to say "The Doctor didn't realize we'd be closed on Friday, she said come next Friday for your first shot."
Needless to say, I'm calling Monday demanding to get in ASAP. My pain and number of joints involved has increased a lot. Also my husband is government employed, so the shutdown took away sick leave for him. So I can't be sick!!!
Y'all what do I do?!?!?! I can't start from scratch with a new Rheumy this close to treatment, but I can't continue with a doc I can't trust.
If making a mistake looking at a calendar is a trust issue, you are going to have a very difficult life if your kids being kids don't drive you over the edges first.
In terms of expectations, a week won't make a difference in the issues you are having. It will take several months for the Humira to work at all and as much as a year to have full effect. You won't get your shot any quicker with that tact. Not that you shouldn't call for some relief.
Nurses talk. If you have a tizzy over this, even if you change docs, your reputation as being unreasonable, demanding, etc will follow you. Thats not good. Call monday explain whats going on with your body if you threw a fit last week give the most heart felt academy award apology ever and have a laugh at the docs expense.
You will be amazed where that gets you.
Allow me to be frank with you, sir. First, I am a NP. Haven't worked in a while, but I'm not an average lay person with medical operations. "Unreasonable and demanding" is about as far away from my personality type as it gets. Trust me, I dodged patients like that and applaud any doc who does.
I have been the picture of compliance and aggreeability. I am the one who has had face to face interaction with this physician who has the compassion of a prison guard. I am the one who has gone to bat FOR MYSELF with her, b/c she didn't have the insight to do so. I am the one who figured out I had a systemic problem going on months before she did. Her "mistake looking at the calendar" the "straw that has broke the camels back."
A difficult life? Friend, my life is WONDERFUL except for this one small portion called PSA. Do me a favor and do not comment on my discussion anymore, if your sarcasm is going to proceed your concern.
Then forgive me, you have said nothing about you physician to this point except you had trust issues because the start oh humira therapy was delaed a week. My concern is very real. Go off on that and would possibly have years of problems including the kiss of death chart note. "Ms XXXX concern with pain seems inconsistent with her current symtoms and disease level." And yes I'm glad you have other issues with the doc besides the scheduling issue. No sarcasm there, because if that was all it took to set off you would have a long road ahead.
Unfortunatly there is a massive shortage of Rheumys everwhere. It's darn easy to cross the line to unreasonable and demanding. For every patient who moves on there is five to take their place. I very much care. Everyone can get great care if they want it. Demanding it isn't enough.
Reread your post through someone else eyes not knowing any of the background....... If this was you patient how would you react? If you were the docs staff who see him as agreat boss with hundreds of happy patients some who even bring him fruitcake how would you react? You missed the understanding boat with me. If I didn't care I wouldn't waste 10 seconds telling you otherwise.p>
You asked what to do, I told you from what I heard. Balance that with what else you know that we don't or haven't heard. Don't go in Monday with gun blazing don't cofuse medication instrustion with a physician appointment, don't expect Humira to take care of an acutE situation or to work quicly ( like in the next few weeks) and don't confuse mistakes with trust issues. That will lead to problems.