First time posting my RA story
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Hi everyone!
I've been lurking for a while and am usually quite hesitant to post on social media but everything I've seen in this community has been so positive and supportive, I decided to take the leap today! It's going to be a long one - thanks in advance for anyone willing to read it through!
I (54F) went to my GP at the beginning of March because my body was in agony - hands, shoulders, hips, knees, feet, everywhere. He sent me for x-rays and bloodwork.
Went back at the end of March for him to tell me it seems like I have RA. I had looked at my blood test results before I saw him again and came to the same conclusion.
By this time, my hands were so swollen it looked like I had boxing gloves on. He said he'd refer me to a rheumatologist. I begged for some steroids to help because at that point I had almost given up, the pain was so unbearable. He wouldn't give me any because he said we'd have to wait for the rheumatologist
I live in Ontario and figured it'd be months before I got in to see the Dr.. At this point, I figured I'd give it a few more days and if I hadn't heard anything I'd just suck it up and go to the ER or an urgent care.
I got a rheumatologist appointment the following week - I cried when I got the phone call.
Went to the Dr. she pretty much took one look at me and my test results and gave me an official diagnosis. I was terrified because my father also had RA, but then developed scleroderma and died from it within 8-10 years. She has experience with scleroderma and assured me that I do not have it.
She gave me a steroid shot and prescribed me 25mg of Methotrexate once a week (injectable) hydroxychloroquine & folic acid which I started that day.
I told her that I also have another autoimmune condition called Hidradenitis Suppurativa (HS) - she suggested a referral to a dermatologist, The two diseases are related and apparently, a biologic can be prescribed for the HS right away without having to fail a bunch of drugs first like they require for RA. There is a notoriously long wait for dermatologists as well, but I figured I'd just wait and get that appointment when I could.
Well, wonder of wonders, I got in to see the derm the following week! She prescribed the biologic yuflyma.
I heard from the pharmacy and the drug company - I have applied for trillium drug benefits but haven't heard anything from them yet. It was recommended to me to ask the drug company for some compassionate coverage to get me started ASAP but they have not responded to that request.
I consider my self very very lucky to have gotten a diagnosis and treatment so quickly - I know many of you have had to wait years.
I have a long medical history involving 5 spinal surgeries and various complications so I don't know if that helped me get seen earlier or not! After lurking here and reading your posts, I realise I've had flares before. I think because of my extensive surgical history it was always assumed my pain had more to do with my back problems and we didn't even consider investigating further. By the time by spine got the all clear, my pain had magically resolved and I just went about my life. This flare has definitely been the worst though and when it was everywhere, I knew something else was going on.
After all the things I've been through and all the pain I've had in my life, this RA has been the WORST by a long shot.
For work, I am a dog walker and average about 10km a day - I thought for a while I might not be able to keep working, but motion is indeed the lotion and I have been able to keep walking. Honestly, the driving between houses to get to my dogs has been more difficult than the walking itself.
The steroid shot wore off pretty quickly. I've since had two prednisone tapers. My most recent Rx ran out last weekend and I was swollen and full of pain within a day already.
I hate feeling like I'm begging for drugs, but it's night and day for me with and without the prednisone. This flare I now realise has been going on now for about 5 or 6 months.
My next follow up was supposed to be in June but I called this past week and she was able to fit me in on Monday 🙏
How long should it take the methotrexate and hydroxychloroquine to work? I know it can be quite a while.
If you've read this far, thank you so much. I appreciate the vast knowledge on this sub xx