It’s already a month after i made the appointment! Time goes by way too fast… I feel like I’m trying to get everything done riding a bike and everyone else is driving a car…
I’m extremely anxious for the appointment!.. right now I can’t even think of what to say or ask and I’m not even sitting across from a doctor…
I googled him and they mention PsA 3 times on his page and no other form of reumatism
There’s so many things I want to say and ask I can’t even think of one… My GP told me to ask him if he knows what could be causing my itching and lower abdomen pain… and obviously I’ll talk about what hurts… But i don’t remember most of the drugs i tried or what pain started when or when it got worse or less…
I notice he’s wearing a crumpled shirt. Hopefully that’s a sign that he’s so focused on his patients and the latest developments in PsA research that smart presentation doesn’t even cross his mind.
You will not f this up! Go for it Cynthia, start listing drugs you’ve tried, where you get pain, intensity of pain, fatigue and, importantly, things that PsA makes difficult or impossible. Then we can play ‘but what about x,y & z?’
I’ll kick off. Drugs: have you tried Mtx? Function: difficulty walking? Standing up on the train? Sitting for long periods? Fatigue: I’m pretty sure you get that, right? So how does it affect your working life and social life?
There may be more categories, how about depression?
Of course you won’t f it up. Sybil is right - start writing the lists. I keep a real basic history diary sort of document, easy for me as I know when it precisely all started. I add to it when something new happens as in a new pain, or when a pain goes away or when I’ve had a truly rotten day or when I’ve had a magical day. One or two lines with the date and then it’s easier to collate it all when seeing a new doctor.
Write down every single question however particular or idiotic you might think it is that you’d like to ask him. Then at the appintment tick them off as he either answers them in his general chat or you ask them. He’ll be delighted you have the list with you. Don’t forget it’s ‘your’ appintment and he’s there to help ‘you’. That’s his job. Best of luck.
Were did my reply go?.. I’m 100% sure i wrote a reply before…
Anyway thank you both! I have real trouble with writing down things everyday… I’ve started so many times and then after a week or 2 i just forget about it… and when i remember i cant find were i wrote it… I’ve tried several apps but they don’t work either… i keep thinking in a minute when they prompt me…
I’m in the waiting room… I was over 2 hours early… I’m so tired! And the brain fog is bad… I’ll forget everything… Even checking my list… even if i know now I’ll forget… I’m so scared!
He does look like a nice guy although you wouldn’t like him much probably @Sybil he doesn’t look like he owns an iron but i don’t either so i don’t care
So… he thinks i have PsA but also fibromyalgia… he can fix the PsA pain (most probably)
I can choose between 3 things… stelara, cosyntex and another… 2 are injections once a month and one every 3 months and the other is 2 pills a day… i have no clue which was which… haha i was thinking the 3 months one but he said the pills would work for itching (just any itching) so i want that one…
He was very thorough and a nice guy he took the time to see me…
He’s going to ask for my x-rays and ordered blood tests and i have a follow up appointment in 2 weeks . (He’s going on holiday otherwise it would be sooner)
It’s interesting that your doc chose the newer medications for your to choose from.
Cosentyx is pretty new and targetted to a specific pathway to help block the inflammatory response. After your loading doses you would inject every 4 weeks.
Stelara is a little older and had been used most often with psoriasis until more recently. After your loading doses you would inject every 12 weeks.
Not sure what your pill option would be. Otezla, perhaps?
Just know that whatever you choose the time from first dose to seeing a positive result can take anywhere from 6-12 weeks. The online information for these medications is easy to find and I recommend you read up before you choose–just don’t freak out when you read the drug information and side effects, OK?
Oh Cynthia! Well done & then some! And I’m all for people who don’t iron. I haven’t ironed anything for 2 years and that was just a moment of madness.
I mean, what a result! Lights, camera and … all importantly … Action!!! I’m all out of exclamation marks but so pleased for you and I hope this heralds a much better phase altogether.
I traded the iron for a steamer. We were great pals until I seared the crook of my elbow with it (long story). We still hang out every now and again, but it’s not a frequent event.
CYNTHIA! Excellent result. He takes you seriously, and he is taking aggressive action. Well done. You see, you weren’t imagining this. It isn’t aanstellerij. (Folks, that’s a Dutch word for which there is no perfect English translation. Loosely: an act, drama, carrying on …) One of the many things that I hate about this disease is that unless you are face to face with someone who is an expert, so often you end up with the doctor faffing around, getting no better, and then thinking it’s you that’s nuts.
I’m so glad you took this step, and I’m sure you are too.
As for the iron issue, I like seeing the good doc with his wrinkled shirt sleeves rolled up. No airs about him! I do own an iron, but it doesn’t see a lot of use.
You rocked that one, Cynthia! Now to stay on a roll …
Otezla does ring a bell… but I’m not 100% sure it wasn’t from me remembering drug names to try any figure out what it was…
I did already try like 6-8 dmards and humira in the past… (turns out i was right in thinking i already tried Arava and failed before… even after i did I was pretty sure she still said nope that’s not in my records…)
I’m pretty familiar with the side effects lists… but I’m not sure what reading up on them would do… the drugs all work for PsA but there’s no way to know (yet) beforehand which one will work for me… or even if I’ll get side effects and how bad they are… three only option is to guess and keep my fingers crossed… (I feel like I’m on a game show and have to choose between 3 boxes… i can check out the box all i want but I’ll have to open them if i want to know what’s inside…)
Or do you have a good reason why i should?
I do have to wait two weeks though… before even starting… and i have a sausage toe… since about a week but since yesterday it’s really getting in the way of walking… and it’s on my good foot!
I keep remembering different parts and smiling… i don’t think I’ve ever felt this good about an appointment at a doctor… especially not one who hurt me as much… He wasn’t overly careful but he was just a tiny bit apologetic and not making me feel guilty almost for being in pain and making them hurt me (which is what i get from most reumathologists…)
Here’s an article on RA related cell apps that might be helpful?
Good luck at your appointment - you may want to ask the doc if you can e-mail or fax him questions later. Despite bringing a list of questions, I usually have follow-up questions.
Well done you! Irons??? I think I have one somewhere but I’ve simply no idea if it still works. I had a hairdryer once too but I think the last time I used that was to defrost the lock on my car door during a particularly cold spell. And ladies despite, I’m still alive:grinning:
but i don’t either so i don’t care 
