Turns out she'd been away from work for a while and when she got back, she realized that I'd had a hold on my records for a folic acid prescription and that I'd recently been prescribed Methotrexate. She was concerned and wanted to make sure that I was taking over-the-counter folic acid.
I must seriously be one of the luckiest, most cared for people around lately! First, the Enbrel pre-authorization gets turned around in a single day, then this! This lovely lady is the same pharmacist who gave me her cell number a while back, just in case I needed to call. Who does that kind of thing anymore? Apparently, some people.
Yesterday was a really good day, all round. I headed down to the Toronto Interior Design Show in the afternoon with the Style at Home art girls. Wasn't sure how my feet would hold up, but they did pretty well. My legs felt shaky, but the carpeting on the concrete floors and my über-comfy but super-stylish Rockport boots kept my feet feeling good until the very end when they just felt sore, not painful. Later on last night, they did hurt, but not horribly so, and the Tylenol helped quell that. I thought of icing them, but, truth be told, I was just too damn lazy and tired to get off my comfy couch.
And speaking of my couch, I can't say enough about it. I've always lived on my couch come the evenings (haha!), and now more than ever. When RA hit, and the pain and stiffness was too bad (pre-Prednisone), my beloved couch was just too low and lying down wasn't an option – I wasn't sure I'd get back up again. Once I was feeling better, though, I had the idea of pumping up the seats. When I first bought the couch (it's a custom one), I'd ordered it with down seat cushions. They proved to be too soft (I was constantly fluffing them up), so then I'd ordered foam-core seats with down surrounds, and stored the down seats behind my living room draperies. I hauled out the down seats (damn, even feathers are heavy when your hands hurt!) and plopped them on top of the existing ones, making for a nice high perch. Perfect! Doesn't look pretty, but pretty ain't what I'm going for right now.
Hey, you do what you have to do. I like your couch -- it has a marshmallowy, unconstructed look that says "come on, dear, come sit here..." When you hurt, there's nothing better.
ReplyDeleteYou ARE extraordinarily lucky to have such a quick, humiliation-free diagnosis. I was lucky too. It only took my doc a couple of visits, many years ago, to figure it out. And I was also seronegative at first. My heart breaks our fellow RA sufferers who had to wait years, sometimes, to get a diagnosis -- and in the meantime, put up with doctoras and others thinking they were faking or nuts.
Let's hope your luck holds, as it has with the authorization for Enbrel and your sharp-eyed, concerned pharmacist, and perhaps the new biologic will be the one that knocks your RA right down.
In the meantime, you're doing great. You've got all the moves. You've got the attitude. And we've got your back.
-Wren
You're awesome, Wren, and you've brought tears to my eyes with your kindness.
ReplyDeleteThank you, thank you, thank you!
L
Imagine my surprise to see the Executive Editor of my favourite magazine talking about RA here in blogland.
ReplyDeleteWe live in Florida, but are originally from the Kitchener area, and we travel back and forth frequently. (Darn-no Style At Home Here, but the website is wonderful, and my DIL saves the mags for me.)
I was lucky to be diagnosed quickly last spring. I am 57, a retired RN, and I do have some damage to my hands- both thumbs. I am also seronegative. It hit me fast and hard, with symptoms very similar to yours.
Methotrexate has put me into remission once, but I am now ready for a second course because of recurring pain and fever these last few days. After that,the Enbrel will be added if the Metho does not hold.
I love your spirit. We have to do the things that provide us the most comfort..and it looks like you have got that down pat. I could see myself sinking into that cushy couch!
I did not want to even accept that I had RA in the beginning. I went through quite a depressed period, but now I am seeing that there are some truly helpful folks out there who understand fully, and are so ready to offer support. Isolation is not an option.
I found you through RA Guy, and once again may I say that I am so happy to meet such a talented young woman who has such an indomitable spirit.
All my best to you Laurie, I look forward to walking the path beside you..
Sue
How wonderful that your pharmacist is looking out for you! Kind of eases the stress a bit. Docs are strange creatures - some are great and others awful. Have had my share of both and I dearly treasure the great ones.
ReplyDeleteLove your couch! Hey, comfy beats out fashion any day. Our whole house is decorated in "comfy" style and definitely not a fashion statement! LOL Whatever works is all that counts. Hang in there!
Hi Sue, nice to "meet" you and so glad to hear you like Style at Home; I love working on it! I hope the Methotrexate works again for you this time, and, if not, that the Enbrel does the trick. Keep in touch and let me know how things are going!
ReplyDeleteWishing you the best, Laurie
P.S. A shout-out to RA Guy for listing my blog on his!
Sherlock, I am lucky re my pharmacist, aren't I? And my doctor is great, too: she prescribed the folic acid so I wouldn't have to pay for it, which is great. The couch IS totally comfy, and I'm going to sink into it any moment now – happy you have your own comfy things!
:) L
Like Wren said, ya gotta do what ya gotta do!
ReplyDeleteReally though, it is still always best to take prescription folic acid as it should be a much more pure grade than the over the counter stuff. You don't want to mess with methotrexate.
Which reminds me, for anyone reading who is on methotrexate, please make sure you get a yearly chest xray, and full pulmonary function tests if you have any breathing problems at all (do not write those off to being out of shape, etc.). RA can have lung effects in a high percentage of RA patients. Many times these are somewhat benign, but I don't want those fewer cases that could be more serious to be missed. And to top it off, the drugs we take, methotrexate in particular, can sometimes have adverse effects on the lungs, pulmonary fibrosis being the worst. But, so can the newer biologic drugs in rare instances too. So push your docs for chest xrays at a minimum (though sometimes these are clear where a chest CT will show changes.) And if experiencing any breathing problems, please push for pulmonary function tests and chest CT's and referral to a pulmonologist if necessary. Really, they should do a chest xray and PFT's as a baseline measure before starting methotrexate and/or biologics, to have as a baseline in case pulmonary problems (there is a range from pleuritis to obstructive lung diseases, to bronchiolitis obliterans to restrictive lung disease or interstial lung disease and pulmonary fibrosis) creep up in the future.
If any RA'ers out there are reading this and you know you have pulmonary changes due to RA or due to drugs to treat RA, please visit the following patient website for support and information. http://www.huff-n-puff.net/newforum/
Folic acid will not prevent the pulmonary problems, but it helps with other side effects from methotrexate.
Chelsea
Thanks for coming by the blog, Chelsea. As soon as the folic acid is being delivered to the pharmacies again, I will get a call and get it delivered to me.
ReplyDeleteRe the pulmonary function tests and chest x-rays, what great info! My rheumatologist did order a chest x-ray for me (it was also to check me for TB before I go on Enbrel), so I've got that under my belt in terms of having a baseline.
Cheers and drop by again! Laurie