Had appointment this morning - much like the others in terms of being in and out within 3 minutes! Wow he’s quick for an old man!!
Tried to ask about horrible headaches (verging on migraines) that I get for 4 days after every mtx dose - he chose not to bother responding to that. He said mtx is somewhat working although not great but that was as good as I would get and there was nothing else he could do. In his words, when you are crippled you will qualify for an anti-tnf - something to look forward to then! I mentioned the itching and rash and sore itchy eyes which started after my first dose of mtx - he’s never heard of anyone having such a reaction and then I was ushered out!
Thankfully I’m moving to a different province but no referral forthcoming from him - when you find somebody I will forward your file! Came home and cried.
Is this really as good as it’s gonna get? I’ve only ever tried mtx - what about combination therapy with other dmards??
We all deserve to be treated better than that. I am glad you will not be seeing him again. I would ask Seenie or Lamb to suggest someone in your new province. I believe Seenie travels to Toronto to see an excellent rheumatologist. Better days are coming with a more modern approach. I will keep you in my thoughts and prayers
Golfnut that was dreadful treatment from your rheumy, you deserve so much better. And I promise you with the support of a good doc that is what you'll get. You're far from the end of the road .... especially if you could get a referral to the specialist PsA centre in Toronto. Do you have the book mentioned under Book Reviews: PsA 'the facts'? It's written by the leading rheumies at the Toronto centre. But I'm sure there is also likely to be someone worth their salt closer to home as well. Have a chat with Seenie 'cos she may well have some thoughts.
Seenie has already very kindly given me the details of the dr in toronto - I am off to a walk-in clinic to get a referral. I am happy to be shot of my current rheumy - he has always been this way since I first saw him and I’m sure he’s not approaching my treatment in the best way. Am feeling less beaten today, so onwards and upwards …
Hi, Golfnut, I saw your post and was going to say “time for a road trip to Toronto”, but I see my mod friends have beat me to it. I will PM you the details of the contact numbers, if you don’t already have them.
It will get better than this. And it will start to get better as soon as you get the referral to the Toronto second opinion clinic. After that, you will have time to sort out a referral to a regular rheumatologist near your new home.
It may not seem so right now, but his blowing you off may be one of the best things that has ever happened to you.
PS I read this and I get SOOOOOO angry at this kind of off-hand and ignorant (in the true sense of the word) treatment. Really, when you are crippled you will qualify for anti-TNF … he obviously never got the memo about early and aggressive treatment. Get that referral to Toronto asap and start looking forward to better days.
Thanks seenie! I must agree it wasn’t the approach I’ve been reading about! I’m now worried about how I’m going to get a prescription for the mtx as he can’t prescribe for Ontario and I’m unlikely to get a quick appointment with a rheumy in Ontario? Will I have to stop it while I wait??
I was soo mad yesterday but out of his office before I had chance to say anything to him! And really what’s the point!
He should be able to give you a prescription for a year, three months’ supply at a time. That should get you through until you get a new rheumatologist. Ask the pharmacist, but I do believe that you can have that filled in any province. I don’t know how long the wait is these days for the Toronto cliic, but once you get in, they will be able to help you with scripts if necessary.
Get that referral going asap. Back in 2012, that was the advice that tntlamb was giving me. I waffled and kept thinking that things would get better, and that the next DMARD would be The One. HA! If only I had listened to tnt, rather than to the voice in my head which was convincing me to trust my rheumatologist. Finally, in 2013 I bit the bullet and did it. It quite literally changed my life.
I too go to the PsA Clinic at Toronto Western General Hospital since early 2013. As everyone says, they are amazing! It's more than just a clinic. They are also conducting a medical study. You get tons of tests, and I can't think of where one could get more attention to detail on a medical condition by some of the most knowledgeable people in the world. I feel very fortunate that I got into that clinic, which happened quite fortuitously.
I agree with Seenie that you could get a large enough supply of MTX to cover you until you see someone new in Ontario. It sounds like you are going to go to a walk-in clinic to get a referral? Another approach to get into the clinic is perhaps to go straight to the ER at Toronto Western General. [I personally ended up at the PsA Clinic via a trip to the Mt. Sinai ER]. It sounds like you are exasperated with your symptoms. The lack of proper control of your side-effects, such as uncontrollable headaches, justifies a trip to the ER, especially being new to ON and not yet having a GP in ON, and the fact that your current rheumatologist was unable to get your symptoms under control before you left. Just my two cents.
Good luck with your upcoming move. I too am from Montreal, and a golfer since 5 yo! Send me a message if you need any help regarding your move and getting established in TO.
Yeah, there's always Arava (leflunomide) and azathioprine to try as alternatives. Just that methotrexate works much faster than azathioprine and it's usually safer.
God people are so kind - makes me feel so much better with the help everybody gives! Just had 3 days of chronic headache after mtx so haven’t done anything! Will be all organized Monday and get things moving…
The kindness that people show here is one of three things, Golfnut: we are either giving back, paying it forward, or both. I will never forget the support I got here when I was a hot mess of inflammation and depression and pain. It was the advice and encouragement of tntlamb and a few others that got me on the road to feeling better. Things are going well for me now, but who knows when the day will come when I will be depending on you to give me support and encouragement. But I’m sure it will.
Oh, Golfnut, it’s not all about advice. I’m betting that when I’m having a rotten time (and it’s bound to happen one of these days) you’d be pretty good at bucking me up.
