how are you doing on rinvoq : here we go again... - NRAS

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how are you doing on rinvoq

Avi2013 profile image
24 Replies

here we go again ...another therapy ...gah ...so scary all the side effects on this .

I am wondering if any of you are on Rinvoq and whether you would comment on:

1. Were you able to still take NSAIDs?

2. Any clot or cholesterol issues

3. Any pointers to minimize side effects

4. What do you take it for

5. Can you come off it ever

24 Replies
Stoli72 profile image
Stoli72

Hello,

I'm been on Rinvoq for nearly three months now, and for me the only side effect has been significant improvement (which has been a relief) and the ease of just taking a daily tablet so concerns about travel, sharps and keeping medication at the right temperature can be forgotten about.

I've remained on NSAIDs but will be looking to discuss whether they are still needed at my next appointment.

No side effects so far but it is, admittedly, early days. I've had no changes in my cholesterol at all and haven't changed my diet either (which includes plenty of cheese and dairy and things generally discouraged when trying to lower cholesterol).

At the moment - I've only had upsides to Rinvoq, for which I am very grateful.

Stoli72

Rainyda profile image
Rainyda in reply to Stoli72

That's a plus, thx for sharing!

wishbone profile image
wishbone

I've been taking Rinvoq for about2 months with a recent week's break due to an infection. No noticeable side effects to date though a recently detected irregular heart beat is under investigation (ECG today). I don't think cardiac issues are a listed side effect but it is a new drug.....

No change with my cholesterol which has always been excellent. I only take the very ocassional NSAID when I've really needed to and that's on hold since the heart issue. Rinvoq is helping, though not as much as I hoped and I need to take pain relief daily but that's no different to the other meds I've been on over the past 5 or more years. It's still early days taking Rinvoq and the week's break doesn't help, so I'm hoping it will be more effective in time.

springcross profile image
springcross in reply to wishbone

Good luck with the ECG wb. 🤞x

wishbone profile image
wishbone in reply to springcross

Thanks springcross, just got back after having the ECG and will phone after 2pm for the results. GP couldn't find a problem when he checked me yesterday, just hope it's the same today. I'm incapable of removing my t-shirt so the nurse had to help me, which was a bit of a struggle due to persperation making the thing stick to me....surprised I never had a heart attack there and then! 😳 It's no wonder I hate this hot weather!

springcross profile image
springcross in reply to wishbone

I know what you mean, it's uncomfortably hot isn't it and getting worse as the day goes on apparently! Glad to hear the GP couldn't find a problem yesterday and hope the results today will be the same. 🤞x

wishbone profile image
wishbone in reply to springcross

"No further action required." I knew it was nothing to worry about. ;-) 😁

springcross profile image
springcross in reply to wishbone

😁 That's great news wb you must be so relieved, now you can relax and stop worrying. 👍 x

wishbone profile image
wishbone in reply to springcross

🙂

Rainyda profile image
Rainyda in reply to wishbone

Good luck!

wishbone profile image
wishbone in reply to Rainyda

Thanks, can't say there's been much change...there's an obvious improvement some days but not much on others...the majjority unfortunately. Not sure if this is flaring or more likely down to joint damage as it gets worse when I'm doing things and it doesn't take much in the way of physical activity for that to happen.

Anniebl24 profile image
Anniebl24

Taking barinicitib which is similar, and yes increased cholesterol but massive improvement in RA. Mine works very quickly and if I need to stop it takes only a few days to leave the system. Good luck

gaynorwhalley profile image
gaynorwhalley

I have been on rinvoq for a year and have had fantastic results. Only problem was day I took methotrexate, but have now been off methotrexate for three months and rinvoq continues to do its job! My cholesterol is high, always has been even before dreaded RA, but latest blood test showed it has actually dropped in last year. Rinvoq makes me forget I'm RA sufferer so does have drawbacks as can overdo it sometimes then need to rest up next day!

Rainyda profile image
Rainyda in reply to gaynorwhalley

Good to hear!

Knit12 profile image
Knit12

I have been on Rinvoq for over 6 months and this is my lifesaver. Was on 10 different drugs with horrendous side effects in the last 3 years. I am only on Rinvoq with an anti inflammatory. I don’t need pain killers. Before Rinvoq I was struggling to walk.

My cholesterol is fine, no other problems though with most RA drugs we don’t tend to like the sun too much. No problems either when I have had my covid booster, I stopped the drugs for 3 days before and 3 days after and fine.

One simple tablet daily and no grief, the best thing is my inflammation level went down to 5%. I still get tired when I do things but that is expected.

I know they give you all the scary stuff to read so you can decide whether you will try the drug, but I honestly thought I had nothing to lose, it had gotten to the stage where I was scared to go out as I looked such a mess from the side effects of the drugs and could barely walk up stairs. Thank goodness I did take the drug

Avi2013 profile image
Avi2013 in reply to Knit12

That's great to hear. Thanks for the post

Rainyda profile image
Rainyda in reply to Knit12

That is so good to hear....hope it works for me. I hear one should see results in 3 - 4 weeks. I've been on 2 wks.....

Rainyda profile image
Rainyda in reply to Rainyda

Amazing, I've only been on for 2 wks...haven't noticed any difference as yet; I hope I hope it will work for me also.....time will tell!

Sueh121268 profile image
Sueh121268

I've been on it since March and my RA symptoms have really reduced, but my tendancy to infection has skyrocketed. First a chest infection then an eye infection then a jaw infection so weeks on antibiotics and no rinvoq. Also my cholesterol has shot up and doesn't look like it's coming down again so possibly statins as well. My consultant is going to see me to see if it's worth keeping me on it but too be honest it's the best my RA has been in years so I'm hoping he says stick with it. I never want to feel like I used to again so I will keep on trying... Good luck

Avi2013 profile image
Avi2013 in reply to Sueh121268

Good luck

Rainyda profile image
Rainyda

I've been on Rinvoq for 2 weeks now, no side effects so far. I was given a 30 day sample to try....re side effects. I called Rheumy today, told her no side affects, so she can prescribe for me. I did call the pharmacist today to ask about interactions regarding grapefruit, as I heard the fruit and the juice are no-nos! And I was shocked, he never heard of this drug????

Avi2013 profile image
Avi2013 in reply to Rainyda

its fairly new. Came out in 2019. I just hope its the real deal...

Rainyda profile image
Rainyda in reply to Avi2013

me too!

wishbone profile image
wishbone in reply to Rainyda

Good luck with it.

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