I started having calf pain yesterday and it got very bad very fast. I decided to wait till the morning and see if it was feeling any better after the overnight and it was not. It was especially bad when walking or standing. After looking and seeing that rinvoq can have the side effect of blood clots, I decided to call my doctor and then went to the emergency room. I have a blood clot in my calf. It’s a DVT, it’s not super big, but I am definitely glad that I went in and got it checked out when I did. I did. I actually thought I was possibly being alarmist but I just wasn’t comfortable with that possibility and just sitting on it.
I will be started on eliquis and we’ll have to follow up with my GP and with the hematologist. Looking forward to it!
Gosh! Thank goodness you decided to get seen. You do need to report this back to your rheumatologist too though. Are you happy to continue to take Rinvoq given it’s thrown you this blood clot? It might now throw you more blood clots.
That is the exact discussion that I will need to have with both my rheumatologist and the hematologist. Rinvoq has been substantially better than any med. I have been on for a really long time. So the question then is, is there an increased risk of blood clots going forward on that medication? How long do I need to be on eliquis for? If it’s only for 3 months or 6 months or whatever, how bad is the risk?
I am probably not surprisingly, not a big fan of taking meds for side effects.
Report back. Are they permitting to continue to Rinvoq daily now? My understanding is that if throws blood clots for you, it will continue to throw blood clots for you. Or those are the conversations I’ve had with my rheumy about it. I’ve kept Rinvoq as my very last resort type med for all the cardiac and blood clot reasons and the fact for me it’s still too darn new on the data available about how really good it is, longer term.
From memory only though you’ve only been on humira as a biologic or did you try enbrel too? You do have the whole gambit of interleukin biologics to try like Cosentyx, Talz, Bimzelx, Tremfya. Cosentyx loved me and it seems Tremfya is doing likewise. And for me Tremfya is also used to treat Crohn’s so it won’t upset that either.
I need to figure things out over the next week or so. I’ll contact my rheumatologist, have a gp appointment August 11, and the hospital will schedule me with a hematologist.
I started with Enbrel, then Humira. This is my first excursion out of the tnf inhibitors. Unfortunately I think you’re correct regarding clots continuing to be a problem. I’m frustrated because the rinvoq is working SO well, but obviously if it’s not safe for me I’ll have to switch
I just got off the phone with my rheumatologist. She said that yes we are going to have to stop the rinvoq immediately. She suggested that I I look up cosentyx as the most probable next medication and that she will get me in within the next week or so
I was doing some reading and realized that I’ve been having more side effects from the Rinvoq than I thought. Sore throat, acne (I never have this much acne and I’m mid fifties!). Obviously minor stuff, but still
I am so sorry your Rinvoq experience was cut so short. I did think once you get a blood clot that you can’t take it anymore.
I wax lyrical about Cosentyx as you know. Please bear in mind however this med does not work fast. You might feel great through the loading doses (you take it weekly for 5 weeks, the 5th week being your first maintenance dose and then every 28 days thereafter) but it tends to dip after. And then it picks up again. For me that was the end of month of eight. So serious patience is required. I know people where it picked up in month 10 and even month 12. And don’t forget around 18 months after starting this med, it got me up my first mountain aged 59 and fat too. It was a seriously enabling biologic for me. And lasted 4 really good years for me too. The 5th year was rocky and overly dramatic until it was clear it truly wasn’t working anymore.
Please ensure you are started on 300mg (protocol in lots of countries sadly not the USA though) is that after two anti TFNa biologics have failed you, you start on the 300mg dose) and please also ensure you take it every 28 days once the loading doses are done. Don’t split the dose into 150mg every 14 days as given the absorption rates of the med you dilute it then. I’m on a lot of forums about Cosentyx and in the USA in particular, messing with the dose, starting off on merely 150mg is rife and then they report it failing unsurprisingly. Recent reseach for psoriasis patients only shows a dose up to 450mg is worth it. I know of no other country than the USA who also starts patients off on 150mg anymore either.
It will make you sleepy tired after your dose, so schedule when you start it very carefully indeed, that will remain your day of the week for a dose going forward. Always schedule a kind of sofa or lazy day afterwards. It might stuff up your sinuses causing a sore throat and sinus headache. Cogent nasal douching really helps that. It’s only good out of the fridge for a mere 4 days too so very different to humira. It’s got a lot less of preservative in it. So it really does sting at all once you leave it out of the fridge for 4 to 6 hours and use tummy fat or anywhere that has decent soft fat so not straight down on the top of your thigh.
Hope this helps.
Do also remember all interleukin 17a which Cosentyx and Talz are and all of interleukin 17 which is Bimzelx are not good with GI tract issues. Cosentyx wasn’t deemed to have caused my Crohn’s as it came on too long into taking it. But certainly when it failed me Talz or Bimzelx weren’t permitted to be tried.
Thankfully as I said Tremfya is liking me this far but it’s been a little up and down given I mistimed a Covid booster and then decided to throw myself on the ground once in May and once in June (falling over accidentally obviously) so set off flares for all three occurrences which was really rather tedious and boring too. But now I’m picking up again thankfully. I was doing really well in April (I started it in December) and finally I feel like I’m getting back to April’s feel good stuff again now. So that is another option for you. Eight weeks between injections after the loading doses. No sinus side effects but it flared me badly for the first two loading doses. The beauty about Tremfya is that it doesn’t reach full efficacy until the two year mark which actually means you can continue to improve for all of that time. Cosentyx like Humira reaches full efficacy in around 12 months.
Thank you! I really appreciate the info and tips about cosentyx, especially in one post. This will make it MUCH easier when I get in to see my rheumatologist to only have to refer back to one post. Fingers crossed that it works, and it’s good to know that it can be slow to work so patience will be required.
Rinvoq was very very fast to kick in so I definitely got a bit spoiled
I also had some bad sores due to Rinvoq. Almost like a boil but maybe acne. I had no psoriasis while on it but it just never got up to speed dealing with stiffness and pain. It was better than nothing but I would only give it a 6/10. I have a rheumy appointment tomorrow and she will then decide if I should stay on Taltz. Last time I saw her (in April) she said, “Well you are almost out of biologic choices.” I am on my 4th…I thought I had more options. I don’t know much but pretty sure I haven’t been on any IL 12/23 meds…whatever that means.
My mom has actually been on taltz for the last stretch of time but is going to be switching to bimzelx shortly.
I clearly have gotten rid of a whole class of medication very quickly! I did not think it was possible to destroy a whole class that fast, but I did it!
Rinvoq being a JAK inhibitor is known to work much faster - they say around three weeks but I think that’s probably too optimistic. But it operates so differently to a biologic just anyway.
What have you tried? You haven’t done Cosentyx or Bimzelx or Tremfya, or Stelera. Stelera affects IL12 and IL23. Tremfya just affects IL23. Did you try Humira, Enbrel, Simponi or Cimzia? I’m trying to remember? I think you did Humira. Anyway there are some more options for you.
