Hi, wondering if any of you have been put on any of the new Jakk Inhibitors? That seems to be my Rheumy’s choice for me now. I have some concerns due to my increased cardio risk factors. If so, how is it working? Side effects?
Also - since I was taken off Simponi and all my DMARDS (long depressing story) I am super plagued with chronic bursitis and tendonitis. I am at a loss for what to do for pain relief. I have tried ice, heat…cannot take NSAIDs anymore. Wine has its limits. Has anyone tried Extracorporeal Shock Wave Therapy?
Im on Rinvoq, Corrie. The only side affect has been inflammation of my hair follicles and anti inflam cream hss stopped that.
I am no longer constantly fatigued and my hands have improved. I still have constant pain in my neck, lower spine and sacroilliac area and my feet toes and ankles. I think most of this comes from permanent damage the PsA has caused over 70 years.
I seem to get short period flares that are not as severe as they used to be and only affect one or two joints and/or tendons.
I’ve been using Rinvoq for a few months and when I add my regular pain management I feel basically normal. I don’t have my typical symptoms and move around like before I had PsA.
I find I need some Nsaids to keep feeling comfortable but I usually manage on 400mg twice a day. Before the Rinvoq I was struggling with severe stiffness and pain daily. Now I feel good, 80-90% improvement.
Has no one just found the spot and whacked a steroid shot into your bursitis? Got rid of mine on the second go.
I have never been offered a shot. I see Rheumy next week. I am off all my meds right now and pretty miserable so looking for some new options for dealing with this - it is pretty chronic and really has affected my mobility lately.
Do ask for one. Honestly you should not be just let like this?
How long have you been on Rinvoq? I just passed my one year anniversary. I can’t say that I am as symptom free as I would like but the only side effect is a dry cough once in a while. It really helped with the fatigue and tamed down all flares although I can trigger them if I push myself too much.
Good to hear from you @Allan, until recently I felt like a loner on Rinvoq. I avoid reading all of the nasty potential side effects and just keep going with it. I have similar experience as you do and appreciate the benefits. Haven’t had any hair issues, in fact, when I dropped off the Methotrexate, my hair came back where it was thinning out. Everything is tamed down but I think the PsA is slowly advancing as I am getting some new pains. Most pain was below the waist but now some elbow, shoulder and a swollen finger. How old were you when first diagnosed with PsA?
Hi Amos I was 50, so 25 years ago. Ive had the symptoms since childhood
Im coming up for my first review since starting Rinvoq and grappling with the question, is it working?
I take it with breakfast. I have been finding I have typical PsA symptoms evenings and mornings but better during the day. My hands and feet flare up in the evening. My fatigue and brain fog have pretty much gone during the day.
My conclusion is it works well for the period of its half life which is why evenings through to morning and the next pill are worse. My blood sugars in the morning have doubled since being on Rinvoq. Worth sticking with it as during the day I feel better than I have for ages
I can relate with your Rinvoq experience and wondering about how well it is working too @Allan I too have had way less brain fog and fatigue but by evening, finger joints, feet and knees start to get stiff and painful. I think that since it is still pretty new, we are told how it will work theoretically only. I do think that I would be pretty much incapacitated without it though. I read somewhere that Rinvoq is given up to 30mg per day for some situations. Perhaps if we doubled the dose (under advice) we would get more “punch” out of it. Also, I don’t have any sign of psoriasis while on it. My PsA is always worse when I settle in to sleep. Do you have any concerns about serious side effects after being on it for an extended time?
As the half life is 14 hours and efficacy diminishes after 8 , 30mg would be good but as one box is costing the Govt here about $1220 Au I cant see that happening.
Im not worrying about its long term effects but really enoying the good 8 or so hours I getting now. Long may it last
My PsA (anything inflammatory actually) is always worst at night and early morning - that is because it correlates with a low in our natural cortisol, as well as some other endocrine changes. If the Rinvoq only has a half-life of 14 hours though, I guess it would be exacerbating that pattern. Have you ever tried taking it in the evening to see if you can “even out” to two patterns? Maybe something to talk to the doc about?
I had thought about changing to taking it in the evening but as is giving me good days I feel I can put up with being poorly in the evenings especially as this is always Ive worst time as you say. Fascinating trying to find the best balance.
I hope you have found yours again
Yes, I can totally see this - I think I’d be the same wanting functional days!
I’m not entirely sure about finding my balance at the moment, it seems more like a horrifying roller coaster than a sedate see-saw But that’s almost all extra-PsA stuff I’ll post some more about once we know a bit about what the heck is happening. It’s really lovely to see you back on here again and hear from you, I’m thinking about a Jak inhibitor next so it’s interesting to hear other experiences.
Also on Rinvoq, I wonder if splitting the dose 1/2 morning, 1/2 evening, would be of value?
It sounds like they need to up the strength and then split the dose, so that you can get at least a full 16 hours of relief. I’m not sure I could could cope with a daily up and down scenario. On my med it’s once every 28 days, I might start getting mild niggles around day 25 or so. But that does mean I have 25 days or so, with very few issues. It has me firmly of the view that my PsA is being appropriately quashed though and I get a decent run of such quashing too.
Remember all these JAK’s are incredibly new. I’d be jumping up at and down at the makers of it explaining my thoughts, whether they wanted to hear them or not! I did the same when I started Cosentyx because of it’s silly dipping scenario after the loading doses, which they don’t sadly explain on their website or PID. But it is a thing according to varying Cosentyx users groups. Very much so. I believe in firmly shouting about such ‘things’ as then it helps all round.
I don’t think that I am experiencing the daily variation of effectiveness as much as @Allan, I just expected more over all. I don’t know the last time that I can say that I woke up feeling “good” so I’ve just accepted this as my lot. Rinvoq is really expensive and when I asked the pharmacist that provided it about a higher dose, I was told that because I am on “compassionate provision” there is no way they would provide a double dose. The drug company is giving it to me because 1. They need success stories to up its market value and 2. My income is low enough to receive it without cost. If I complain that it isn’t working to my expectations, they will cut me off. But then I don’t know if something else will be less or more effective. I am highly functional but painfully so…I can do most things but slower than normal and pretty miserable afterwards. On Rinvoq I don’t have any psoriasis, much less brain fog and fatigue is less. My flares are all about Enthesitis hitting all the usual places and creeping into new joints. I really don’t understand the principles of dosing…does one size fit all? Does a single dose work the same in a 90 pound person as in a 250+ person? A mystery to me. So I guess I am thankful that I’m not worse but was hoping for less daily pain as I associate constant pain with progression of the PsA.
Reading what you wrote made me so sad about the fact that a supplier of meds could virtually hold you to ransom like that. Say nice things or we’ll whip it away from you as that’s the definition and limit of our compassion. Makes me so incredibly grateful I live in the UK with the NHS. I feel no inhibition in raising dose issues, suitability issues nor indeed complaining if a doctor or health professionak was stupid, wrong, incompetent or whatever else. As a tax paying resident of this country none of those rights are denied to me. If my disease warrants a drug costing the NHS £1,500 per month then I get that med. If it doesn’t quite suit me, then I get another. My disease activity, not my insurance cover or how much I earn, is the only guiding factor as to what med and indeed what dose of that med I get.
My thoughts are that Rinvoq is so new, my guess is the dose issues most certainly on weight basis are not yet set in stone. Interestingly few PsA meds are dosed according to what you weigh, loads of Crohn’s ones are though. And many Crohn’s patients will tell you they respond faster to meds. There are treating the same sort of autoimmune issue with many similar types of meds used in PsA due to the similar inflammation issue. Odd isn’t it?
Now here’s the thing - I associate pain with disease activity levels not necessary progression levels. I associate progession with increasing incapacity and increasing damage causing issues. I can have increased disease activity which isn’t necessarily progression merely that my PsA is not being quashed enough with whatever med.
But I stay ahead on pain, I take a prescribed NSAID daily, I take prescribed pain meds daily. When I’m doing well they are taken at the lowest possible levels, if I’m not doing so well I can flex them up as I see fit to max daily doses. So for example on the first couple of days of any holiday I take, given they’re always fairly active, I’ll up NSAID and pain meds and slowly decrease them as I settle into doing a lot more on a daily basis. I always try and stay ahead instead of constantly playing catch up.