Been on this wonder drug for over 6 months. It really has changed my world, and even my Rheumatologist is saying she is receiving good feedback on this drug. My inflammation results are great, and I have little inflammation in my joints. So that is the plus side. My previous drug stopped working and I was struggling to walk, now I have no problems though I couldn’t walk far, but enough to go round the supermarket on my own.
On the negative I have had 4 urine infections, regularly have neuralgia and sinus problems, still feel tired and have to take my time doing things, plus my liver count is higher than they would like but not in the danger levels yet, but it is all things I can live with as after 10 different meds this is really my wonder drug. So my fellow Rinvoq takers how has it been for you? I would really love to hear from you
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👏🏻 It’s not a med I take but I just wanted to say I’m so pleased it’s given you some good mobility back and controlling your RA. More mobility and stamina will come I feel. Hope the infections calm down.
I have no personal experience of Rinvoq (Rinvoq (upadacitinib which is a JAK inhibitor) but my sister does. Unfortunately it was ineffective for her and she's now on Sarilumab (a recombinant human monoclonal antibody that specifically binds to interleukin-6 receptors). The various biological treatments mostly work in slightly different ways so many people find that if the first one doesn't work, it's worth trying another variety!
Thankyou for your reply, yes it does tend to take a lot of trials before we find the drugs we need, but it is always useful to know there is something else to try
I just saw your post about Rinvoq. I have been on it for 5 1/2 months and the improvement has been vey gradual, but I am feeling better than I have been in 2 years. This is the 4th med I have tried during that time. Most of my joints feel much better. My shoulders and my left knee are still painful, but those have been the worst joints all along, and the knee and left shoulder are better than they were, so maybe they just take longer to improve. I am seeing the rheumy in May so I will see what he says.
My energy is better. It is still kind of low, but when I was on Simponi for 6 months, I could barely get off the couch.
I have not had any infections. Occasionally I feel like I am getting congested, but it goes away within a day. It seems that my skin is flakier than it used to be (does that make sense?) but otherwise I have no side effects.
The last 2 blood tests I had showed that my CRP was normal (under 5), my ESR is coming down after being at 120 for many months, and my hemogloben is normal. Liver count is good.
I feel like I am slowly starting to gain strength. I am also gaining a bit of weight, which is a good thing for me.
I am so glad to hear that you are doing well on Rinvoq. You must have been so discouraged after trying 10 meds. I wish you continuing improvement for a long time.
Thankyou Elizabeth for taking the time to reply. I’m seeing my consultant on the 20th. I’m glad you are seeing some improvement, mine told me my inflammation levels had gone down greatly the last check up I had in January, so it might be worth you asking that too. Yes I had began to wonder if I would run out of drugs to help, I believe there is another new drug that was also licensed. Hopefully your progress continues.Heather x
8 years since sudden onset RA (2000 RF).Nothing has worked to relieve horrible pain & suffering, until Rinvoq. I still have awful fatigue, anxiety, depression & foot & hand damage from lack of remission, but at least I have low level pain. I did get shingles as side effect of Rinvoq. I am so glad to not take mtx, injections, infusions, or prednisone.
Thankyou Hisue for your reply. This disease is a life changer in so many ways. I am pleased to hear that Rinvoq is some ways helping. I am sure to some people they hear the word arthritis and think we look okay but don’t see the debilitating aspects with the fatigue, anxiety or pain. Along with that we have to deal with this disease and that can bring the depression as we mourn what we used to be able to do and this is our new reality. I really hope you continue to improve. My rheumatology team arranged for me to have hot paraffin baths for my hands which certainly improved them, now I knit everyday to keep them moving, maybe have a chat with your team and see if they can do something for your hands and feet.
Thanks so much for your reply. Yes, RA is a very “tough ride” and most meds have deplorable side effects & ruin the gut flora & chemistry, which is supposed to be where the RA starts. Been to several rheum drs- and none proposed a team approach but 1 & he retired in disgust with computerized medicine. Very sad that the young rheumies I saw after him were more interested in quick visit $ than taking the time to explain & set up a team approach to help my severe RA. I’m surprised I am still alive!
Here in the USA, I’ve gone to 2 major university medical rheum depts & all they do is RA meds. I have had to read & suggest everything- from PT to OT, to exercise, & treatment for anxiety, fatigue, dental issues, depression, etc. The worst for me now is the fatigue, anxiety, & depression. And Rinvoq in the USA is $5,000/mth without Rx insurance. Thanks again for your suggestions & help.
So sorry to hear this, I am very lucky I know to live in Scotland and we get free medical care and medication. I know that during my long ride of RA of over 20 years, I have had all types of help including exercises in hot pool in the hospital, then I had one to one Pilates which was excellent for building up core strength but came to an end when covid struck, I wonder if any of these things would help you. My RA tends to be hands, wrists, ankles and feet. I really help you can find some support
I’m 59 now, I think when I discovered I had RA it was a huge shock and I remembered my grandpa who died when I was 8 and he was only 61. His RA was crippling and they did not have the same medications. His only pain killer was aspirin and he was very deformed and couldn’t move. My grandma looked after him and she had no life. I was really stressed being diagnosed and ended up being off work for over 6 months. At the time I worked full time at an oil company and had done so for 20 years. I took voluntary severance and moved into a less stressful job and reduced my hours to only 4 days a week.
I have discovered that stress is a huge trigger for me. I changed jobs a few times and latterly the last job I had I took on more responsibility and hours. I’m not saying it has all been plain sailing as there have been times I needed steroid injections or walking aids.
My worst was 3 years ago, I was being made redundant and took the opportunity to move back to my home town. The plan was I would become a cater for my mum who is in her late 80s and look for a part time job. The stress of it all resulted in the worst flare, my hands had nodules, my middle finger in my right hand bent backwards and wouldnt straighten, and I could barely get dressed.
It has taken 10 different meds until I got Rinvoq 6 months ago. Along the way I have learned to do just what I am able. I haven’t managed to go back to work, but my mum and I made a pact jokingly we are not allowed to be ill at the same time. If I am tired I will have a day in my bed. I have found that you have to listen to your body and if it says stop I stop. When I go shopping, I can manage to go round the supermarket, get the bags in the car and get home. Usually I need to have a seat for 5-10 mins before I unpack the shopping.
If my body says no you can’t go shopping I will book my shopping in the internet and get it delivered.
Thankfully I have nobody to answer to and there is only me and my mum at home so I can please myself, mum is easy going and if I’m not able to cook that day she is happy with a sandwich or a bowl of cereal.
It’s just a case of not allowing yourself to get overtired. I don’t tend to be so anxious these days. It also helps I have a brilliant rheumatologist and team. Any problems I can email them and they come back to me within a few hours.
Plus it’s important that sites like these we can share our stories and if we are having a bad day, the people on here know how that feels, and they can support us through it.
I hope this helps you in some way, that whatever you are going through you are never alone
Doing great, hardly side effects! Same as you, a bit of a high liver score... Using this now for 8 months ( 1 pill a day), after so many other failed attempts with the usual drugs and injections.
Hope it works for you. I'm in my second month. So far, so good, haven't noted good changes in my R/A as yet. Did have neuralgia last week, don't know if it's from Rinvoq, thought it was from air conditioner?? Anyone know if one should stop Rinvoq for a week before 5th booster (Bivalent) and a week after?
I’m on day 3! Literally taken my 3rd pill and after nearly 7 years hating methotrexate side effects and trying a biologic which just wiped me out completely, I am so glad to try something else. My consultant said after 2-3 weeks I should notice it starting to work and can stop methotrexate which I am desperate to do. I am also exceedingly grateful to be in Scotland where prescriptions and healthcare is free at the point of need. I’m a tax payer and work full time but certainly getting my moneys worth now with the cost of RINVOQ, I was shocked and equally glad my rheumy was keen to try it.
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