Hi all! A newbie here from a suburb of Vancouver. I was diagnosed early this past summer, but likely have had it for about 5 years. Inn2016, I broke my ankle while hiking (and then hiked out on it!). While the fracture healed nicely, it seemed that non of the soft tissue did. After getting an MRI, I discovered that I had a bone spur on my heel due to plantar fasciitis, and a longitudinal tear of the Peroneal brevis tendon - non-operable. I was called a unicorn and handed my membership to the chronic pain club, which included monthly physio trips, podiatrists, chiro, orthopedic consults - you name it. I had needles shoved into my calf muscles to relax them so they wouldn’t pull on my tendons (IMS), I paid hundreds of dollars on laser treatments for plantar fasciitis. Nothing helped. Slowly it got worse. Then I developed eczema on my hand that wouldn’t go away. I went to my Family doc, who referred me to a derm - after 6 months on a waitlist I found out it was psoriasis, not eczema. I got my Dovobet, and limped along for a few years, still treating my chronically-injured ankle diligently. Then about a year ago, the strangest thing happened - all the same aches and pains in my injured foot popped up on my other foot, plus I seemed to add both Achilles tendinitis and something called metatarsalgia. I was offered cortisone shots and more physio! But something didn’t sit right. If my foot pain was related to the fracture, why would it show up on the other foot? Then my doc retired, and I struggled to find a new doc. Finally, I got a referral to a rheumatologist. She seems fantastic. We met by zoom, and she immediately put me on methotrexate and Hydroxychloroquine, but told me that they weren’t likely to work on my kind of PsA, that my best bet was on Cosentyx. We made an appointment to meet later that summer. When we did meet in person finally, she was really surprised at my hot, swollen feet, and SI. She said that she had enough information to fast track me to a biologic, and also sped my MRI appointments up to see what damage is already done. I guess I also might have nerve issues in my foot, because it feels like they are always covered in tiger balm. So now I am waiting for Fair Pharmacare and blue cross to duke out the funding for my Cosentyx. I have no idea how long it will take, or how much I may have to pay. It wasn’t all that real to me until I got a text last week from the ministry of health giving me permission to book my 3rd dose, as someone with an autoimmune condition. Yipes! Now it is real!!
I that’s my story. Thanks for joining me on this journey, for your help and support. I’d type more about the me that exists outside of my diagnosis, but my finger hurts thanks in advance!!
Oh yes, real it is! But it was real way back around the time you broke that ankle. Nobody knew it at the time.
I love what you said here
because so many of us have been on that merry go round. Bet you’ve got a good orthotics collection too. Oh, the Unicorn thing … I too was told I was special, but it wasn’t a label nearly as nice as Unicorn.
We’ve got a few Canadians around here, eh : @Amos is one (and he has foot stories, oh yes he does). We also have many people with similar experiences to yours. You’ll hear from some of them, I’m sure.
A suggestion for you: use the search engine (magnifying glass) to find some threads that you are interested in. Then comment on them. That will alert the others on the thread that you’ve commented, and they may speak up. Just check that the thread isn’t more than a year or two old.
We’re glad you’re here, Random! Sorry about the PsA, but for some of us, finding this community has helped us appreciate a whole other side of life.
Hey there from even Greater Manitoba, a warm welcome from the prairies! Always good to have another Canadian randomly drop in! Vancouver gave us “Spirit of the West”, Toronto stole Neil Young from Winnipeg and exposed us to the “Bare Naked Ladies” but GuessWho also came from the prairies? Yup, BTO! …sorry, this is a very serious site!!
Glad you are here for all the right reasons but sorry that you have to live with the PsA that is. A good rheumy is like gold and it’s good to hear how quickly you have been sent to biologics. The RX game demands more patience (patients?) than I was ready for. I want to take a pill and see improvement by the morning but was told…”maybe you will see some improvement in 4 months, or 6…but some are helped in as little as 2 months. So, I hope you can find ways to cope and pass the time with genuine hope that things will get better.
My left foot planters fasciitis was horrible and caused knee and hip pain and then seemed to back off and come on strong on my right foot. Then both feet, the whole foot went through a season of severe cramping…only when I wanted to sleep. I’ve never had swollen joints, fingers or toes but will see red and purple joints without any puffyness. There is a good chance that you will find that your feet will improve once on biologics. Your name fits the disease very well as random pain seems to be the standard. Looking forward to hearing more of your “adventures”!
Let’s hope when you finally get your Cosentyx it works as well for you as it does for me. I’m in the UK and we need to cycle through drugs a litte before we get to things like Cosentyx. But my PsA hit me from nowhere after a bunion correction operation. That worked fine but the rest of that foot never recovered and then my hands joined in plus hips etc here I am nearly 6 years later. And I hope you’re starting on the 300 mg dose too. Just note you might do really well in the loading doses but then it can dip taking several months to come back up again. So don’t give up on it too soon. For me it didn’t pick up again until calendar month 8, so lots of patience was needed.
A couple of weeks ago I was on holiday in the Lake District and climbed my first every proper mountain or Wainwrights as they’re called there. It was only a little one and I was slow but I got to the top. That’s the power of meds working for you. So please have hope. And in January I’ll be aged 60 too so I was well pleased with all that as you can imagine!!!
That’s our Amos! LOL
So did I ever tell you that I taught on a tiny Caribbean island for a couple of years? One day I exposed one of my classes to the name of “The Bare Naked Ladies” and they were SHOCKED that the old teacher would – shhhhhhh – mention such a thing. Until they realized that the band was comprised of fully-clothed, and really geeky guys. Hilarious! Well, I thought it was funny, anyway. The best was when one of them came to class humming “If I had a million d…” For my benefit, of course, but it made my day.
@Poo_therapy, congratulations on conquering that mountain. I well remember your years of miserable trials and challenges. You are one tough and determined person, but we’ve known that for a long time. Any good pubs around those parts?
Seriously, I think the second hardest thing about this disease is the length of time it takes to find out if a therapy is going to work for you. A few lucky people amongst us know almost right away, but for most of us it takes months to find out whether it is going to help at all, and often longer to determine how well it’s going to help.
I think the hardest thing is carrying on while the therapeutic quest continues. Most of us have a lot of experience of this state of affairs. Making this harder, of course, is the fact that there is very little good symptomatic relief that our docs are willing to give us. We just have to tough it out, and you’ve done more than your fair share of that Poo.
Great story @Seenie re: BNL. I saw them at the Wpg folk fest just before they went “big”. @Poo_therapy, that is inspiring to hear of your mobility ability…climbing mountains! What’s next, cleaning stalls?
Random trivia from Randomgirl - I’m actually from just outside of Toronto, but have lived in BC for 23 years (the other 4 were in Japan). Another random fact? I actually went to school with the drummer from BNL, though he was in senior band and I was in junior band. not sure that is a great claim to fame.
I’m crossing everything that Cosentyx works, though my rheumatologist says that it will probably be great for my skin and feet, but humira would likely work better if my SI joint is involved. She then super rushed my MRI appointments - I got them for the beginning of November! I think she must know people in high places or something - that is unheard of in this part of Canada! She’s an interesting one - studied at Harvard and seems to have no patience for the slowness of the system here. I’ve never quite met anyone like her. She’ll look at the recommendations and say, “this is dumb. We know what is effective, so we’ll just do that.” Feisty! I’m crossing fingers that this means that she will be swift and decisive if medicine isn’t working. One can dream, right?!
Well the reason I’ve called myself poo therapy is because before PsA hit, I volunteered on a rare breeds farm, which basically was involved in saving rare breeds of farm animals. It’s also open to the public. So I used to go there early on a Sunday morning (before the public came) for what I called ‘poo therapy’ as in mucking out farm animals. Did mostly pigs and cows but some horses too. Their stalls being the easiest to clean out by far. I adored it as you got to know them all, even if it was a working farm which meant some went off to become sausages too. Those ones got extra treats on my watch, always.
Your rheumy sounds like she’s on the ball. But don’t let her cycle through Cosentyx too fast please, it really does dip after the loading doses for far too many people but does pick up again. But can take its time. You’ll constantly feel like it’s not lasting the whole month but then it starts lasting the whole month eventually. Remember most biologics don’t reach full efficacy until around 12 months. Sadly patience is needed to get meds working optimally, as stupidly really none of them appear to have been made to work real fast at all. Just none of them bar steroids and they need huge amounts of respect really given what they can do to our bones (especially us females) as I’m one of those who has developed osteoporosis as a result of steroids.
You are so right about the steroids. They are such an amazing medication, but at the same time can cause such long term problems. Osteoporosis, diabetes. . … . the list goes on.
@Randomgirl welcome! I’m in New York, so I’m sorry I can’t jump on the canadian bandwagon. It sounds like you got a really good rheumatologist and she’s taking your situation quite seriously. Waiting for meds to take effect can be really frustrating. Hopefully you start to see enough improvement soon that you fee l like you’re going in the right direction.
@Poo_therapy that sounds like a dreamy place to work. I have a pony, and mucking out is oddly therapeutic, isn’t it?!
Ok, my Cosentyx approval came through! I start next week! Trying to figure out when is the best time to inject based on side effects. I work at a school so I can’t be nauseous or exhausted too much (I’m used to some fatigue!) at work, as it is just too busy!
Cosentyx made me very nicely sleepy especially at the beginning and a little out of it. Others call it severe fatigue but I wouldn’t call it that. It simply made me want to watch rubbish on TV on the sofa. So I take it on a Friday evening, because I work Monday to Friday. That means I can have a lazy weekend and by about Tuesday I’m really raring to go again.
So what dose are you taking 150mg or 300mg? I’m on 300mgs which presently means two pens although they’re just bringing out a 300mg pen presently. Take the injections out of the fridge in the morning and do it in the late afternoon or evening. The pens can stay out of the fridge for only 4 days and once out of the fridge they can’t go back in again either. I haven’t heard of anyone saying it makes them nauseous, it can though block up your nose and sinuses, so saline nasal sprays or saline nasal douches work well on that.
The job it’s going to do for you is fairly big one really so it can give you a sort of ‘whack’ as in making you a little woozy too especially initially. So again be ready for that. And be ready to sleep really well too. The injector pen is the Rolls Royce of injector pens in my view - especially easy to do and if the pen is properly up to room temperature you barely feel a thing. Inject into the fattest part of you. For me that’s my stomach. Thighs tend to have too much muscle regardless.
You’re obviously going to the loading doses which means you take it weekly for 4 weeks and on the 5th week you take your first ‘monthly’ dose. So you take it 5 weeks straight and then go to every 28 days. Don’t make the mistake of doing it on the same day every calendar month, this is an every 28 day med and you don’t want to unwittingly underdose yourself.
Many report doing exceptionally well in the loading doses week on week and as I explained above then it sort of dips but hang in there on that, it came back up for me around calendar month 8. So as I said patience is needed. Best of luck with it all. And feel free to ask any further questions that arise.
I’m sort of lazy and sleepy on the Saturday always. But as I said by Tuesday I feel back to myself. Sunday and Monday isn’t at all as sleepy but I’m possibly grumpy and a little out of sorts and lacking in ooomph really. I just never plan to do much on Cosentyx weekend really. So take it when you’ve got nothing much you ‘have’ to do the next day. The day you choose to start it, will be the day you always take it going forward. So make sure the day after is a day you invariably have choice over what you do. Hence me doing it on a Friday night as I have total choice over what I do on Saturday really. Best of luck with it.
Yes RG, it may take some time. I had an odd experience when I was breaking in my biologic (or was the biologic breaking me in?). A few weeks in, I started getting these random little bursts of tingling throughout my body. Nothing earth shattering but I knew that the Enbrel was doing something. And eventually things started going so much better for my poor old body. The positive effects compounded for about 5-6 months. Of course, part of it is the drug, part is sleeping better, and being able to get more exercise, etc. And it all adds up.