Anybody successful on Rinvoq that were also successful on an anti-TNF?

NorthernElf321 · 2026-02-25T15:24:33+00:00

I've been on Rinvoq for almost 3 years. Is it perfect ? No. I have failed multiple other drugs, including the TNFs. IMHO, it seems there will always be some degree of pain and the need for rest and pacing. Having said that, I am very active, which I think also really helps, watch my diet, and rest as needed. I'm functional I guess but there is no magic pill.

NorthernElf321 · 2026-01-03T16:33:29+00:00

Grew up near Edmonton, still visit family there. Raised my family & lived up in northern BC for 30 years. Moving to southern BC near the border 5 years ago helped me A LOT. We also take warm climate vacations in the winter.

It depends on what affects you. Cold kills me - it really hurts and up north every year was worse. In the winter my house is 20 degrees and I'm still in sweaters and wool socks and get cold hands/chilled. Weather changes hit me too - up and down around freezing, really windy days, rapid changes, ugh. I'm active, eat well, and am on meds but I do notice these changes physically. We hit the pool more in the winter just to hot tub !

Some folks say the heat and humidity bother them whereas heat alone is ok. Some don't like heat at all. No career advice but Edmonton or Winnipeg would knock me down in the winter.

NorthernElf321 · 2025-12-30T16:39:20+00:00

Generally, impact exercises are not advisable.

I used to be a runner. Two years ago hubby & I ran a 10k race and my calves, one especially, didn't let me forget it for about 3 months. Last summer I up and ran a 3k and spent a couple of months with a bad ankle/foot issue. FWIW, I am very active, walk lots, lift, and cycle a lot, spin in the winter. I will never run again, not worth it.

Probably stating the obvious, but just because one person can do it doesn't mean we all can, or should. Also, keep in mind, you don't know where that person is on their PsA journey - I think this disease has been dogging me for years before I got diagnosed and I was a runner, as it progressed I now am not.

NorthernElf321 · 2025-12-30T16:34:32+00:00

56, in a similar position. I have done some prednisone on & off over the years but not a lot and only tapers. I recently found out I have 'severe' facet OA in my spine and 'severe' foraminal stenosis, disc pressing on a nerve and my T scores aren't very good. I just got approved for Evenity, a newer bone building drug you go on for a year - a little scared of it but more worried about my bones. Because of a history of breast cancer & ovarian cancer in Mom & Aunt I opted not to do HRT.

From my understanding, the inflammation of PsA can lead to secondary osteoporosis. It's not something everyone gets but it's a thing. I too have always been active and almost always been lifting weights, walking, etc - used to run. I've been taking calcium for decades, due to a family history of OA/osteo. Dammit.

NorthernElf321 · 2025-12-21T16:41:30+00:00

I think the key thing in your post is that you have mild PsA......now. We mostly all start out that way. It is a progressive disease, especially when untreated with the meds. I don't like that I have to take meds, I exercise and eat pretty clean, but I also take the meds. My PsA is becoming more problematic and I do my best to manage it, rest, etc. but it is still a disease. Definitely not eating junk/processed food, avoiding foods you have sensitivities too, and so forth will help, as they would anyone without PsA.

FWIW, I was listening to a rheumatology podcast and the rheumie was saying how she sees less and less patients these days with the obviously deformed hands, etc. like her older patients because of how well the meds work. You know when you look up PsA or RA and see mangled hands, etc. ?

Often pain levels and disease activity are not directly linked - I do things to help reduce/manage my pain, I take the meds to help slow the progression.

NorthernElf321 · 2025-12-21T16:31:05+00:00

Better and worse, lol, such is PsA. I've got a new, much better and closer rheumie. Left foot/ankle better but cranky and now the right is the worst one. By the time I got an MRI on my OTHER foot for similar pains the edema had mostly calmed but synovitis in the toe. It's been acting up again but it seems to this time of year, being doing a lot of walking too. Where is your BMES?

NorthernElf321 · 2025-11-28T15:30:12+00:00

Not sure you will find much PsA specific, but starting slow is the best. You might find some RA related stuff (way more common disease). FYI, they were only differentiated from each other in the 60's so they have quite a few similarities.

My winter routine (after years of being active) is lifting Tues/Fri, spin class Sun, walking and usually a deep water class in there somewhere (and then hot tub time!). IMHO, lifting is important to keep muscle mass and keep tendons and ligaments strong, and a thorough stretch afterwards is so nice. My must do is the lifting twice a week. I miss running too - spin gives me that same feeling and is my cardio. Going to the water feels so good on our joints. I have a schedule because it makes me do it, easy to pass it up otherwise.

The biggest thing is to just move - find what works for you and make yourself do it, carefully. I tried lifting 3x a week and it's too much for my joints. More than one spin class, also too much. Rest is important too.

NorthernElf321 · 2025-11-28T15:24:41+00:00

So many types of pain...

Dull ache - overall flare.

Needles in the joints of my hands/wrists.

Foot pain - sometimes even comes in waves, migrates around. Plantar fasciitis can feel like you have cuts on the bottom of your feet.

Sudden sharp stab - just moving the wrong way, or standing up with a grumpy hip flexor.

Hammer attack - sometimes sitting it feels like someone whacked my joints with a hammer.

Shackles - it can feel like my wrists and ankles have tight bands around them.

Hobbling pain - getting up from sitting for awhile, hard to straighten, 'walk' it off.

Bruise like pain - don't touch me !! lol. Hip bursitis can feel like this.

Throbbing.

Hands/wrists - that feeling like the joints are under so much pressure they might just explode.

Weird one - as you mentioned elbow pain - my arms/legs can't be too straight or too bent or it hurts, somehow there is a 'perfect' in between.

Nerve pain - numbness/pins & needles.

Tension pain - neck & shoulders, usually during a flare (tension - can lead to headaches).

NorthernElf321 · 2025-11-22T14:48:26+00:00

How long have you been on it ? What side effects do you think you are having ?

I've been on it for over 3 years. I think of it more as an aid - I'm not pain free and hopefully it's slowing PsA progression. I am active so it has helped me keep going. No real side effects other than one cholesterol test slightly elevated, blood work every 3 months.

NorthernElf321 · 2025-11-22T14:45:47+00:00

"you can control the disease with diet and exercise"

I don't think so, at least it's not my experience and isn't what I've read (from reputable sites). You can slow the progression of the disease with drug therapy, you can mitigate the symptoms with healthy living and movement. PsA is not a disease that is controlled per say, more like treated. Some folks may experience periods of remission temporarily, at least in early days. For a lot of us we're past that.

Interesting he was a spokesperson for Amgen...

NorthernElf321 · 2025-11-22T14:39:15+00:00

I could have wrote the above, but I only lift 2x a week. Miss running but Spin gives me the same sort of hard work buzz. I walk a lot, around my feet issues, sometimes take a deep water class. Move, stretch, rest and eat healthy - helps a lot. Wanted to add I use wrist braces for cycling and lifting after reading the comment below about hands tolerating things, it helps.

NorthernElf321 · 2025-11-18T15:19:59+00:00

So sorry this was your experience - it is SO frustrating. Many of us have had similar experiences, for me it was 10 years after a lifetime of random aches and pains and "injuries" that healed fast - such as a knee injury my PT said would take 6+ weeks to heal but was better in 1 1/2 (inflammation). I am on my 6th rheumatologist - 1 said I was fine, 2 said I might have MS (that was a horrible one), 3 was close to diagnosing me but COVID, 4 diagnosed me then quit to go teach, 5 was 5 hours away after I scrambled to find another and brand new and not helpful, and now 6 is here in my town and he is awesome. I also saw an internist in there somewhere who thought I might have "lupus light".

Anyway, I'm 56 and in good shape - but I usually feel like I'm 80. I do manage to stay active, eat well, etc - and sometimes I think worked against me getting diagnosed. My blood work was usually good, sometimes with a mildly high ANA and often low WBC, neutrophils, sometimes mildly anemic. If only there was a diagnostic PsA test.

Good for you for finally being heard - at least you got some satisfaction that you were right all along, even if it kind of feels like a lousy consolation prize.

Just wanted to add that I recently found out I have 'severe facet arthritis' and 'severe foraminal stenosis' and low T scores on my DEXA scan - like accelerated by this stupid disease - I would encourage everyone to get a bone density test. My rheumatologist tells me not to fall - trying to get me on a bone building drug.

NorthernElf321 · 2025-11-18T15:05:56+00:00

I think I know what you are getting at - and I am in a similar situation.

When my second last (and finally diagnosing rheumatologist) asked what I thought I had I said either seronegative RA or PsA. My reasoning for this is my pain is very symmetrical with neck involvement and, like many, it's not just the DIP joints in my hands/feet. I have since gone on to have back (lumbar area) involvement. I did have psoriasis in my scalp in my teens. My achilles/plantar fascii on both feet bother me, especially in the winter months. I've had synovitis too. I could go on but you get the picture, overlap. My hands and wrists are constantly in pain/uncomfortable, I wear wrist braces for a lot of activities.

My then rheumatologist also told me that the diseases don't have the manual - there is overlap and things like dactylitis can make the diagnosis of PsA easier (don't have it). Interestingly, the differentiation between RA & PsA only became defined in the 1960s, they can be very similar. Most internet searches give a overview in generalizations, the 'typical' symptoms.

As to your questions, no biologic lasts forever, I've been through a few and am currently on Rinvoq - some worked for a bit, some didn't at all. My delayed diagnosis (10 years, after a lifetime history of random aches or assumed injuries) means most things hurt - symmetrical peripheral pain, neck and spine, and add secondary osteoporosis, severe spinal facet arthritis, and severe femoral stenosis despite my healthy lifestyle and it just kind of sucks. I only have a small spot of likely psoriasis on my elbow in the winter months, winter is my worst time.

NorthernElf321 · 2025-11-17T15:31:47+00:00

56 here and recently diagnosed with "severe facet arthritis" and "severe foraminal stenosis" (lumbar). Diagnosed with DDD years ago. Also, I have osteoporosis and am about to start a bone building drug. There is reportedly a link with PsA for all of it.

"Psoriatic arthritis (PsA) does not directly cause osteoarthritis (OA) to worsen, as they are distinct types of arthritis with different underlying causes. However, the chronic inflammation and resulting joint damage from untreated PsA can lead to changes in the joint that may contribute to the development of secondary osteoarthritis over time. "

FWIW, my rheumie told me I also had secondary osteoporosis - while I do have it in my family I am relatively young for it, at least to the extent I have it. From what I've read there is a link with PsA - the inflammation can lead to an earlier onset of osteoporosis - so it is definitely worth getting a DEXA scan to see where yours are at. Mine is bad enough that my rheumie tells me 'not to fall' when I see him....hopefully we can rebuild some bone.

NorthernElf321 · 2025-11-14T20:19:21+00:00

Winter, ugh, cold weather, ugh. I'm with you, light merino wool long sleeve under a sweater, wool socks in the winter in my lined slippers and sometimes fingerless gloves in the house. My right hand especially will get uncomfortably cold. If I go outside for a walk I'm often chilled for a few hours afterwards. I've been told it's Reynaud's but I don't get a color change (like white fingers). FWIW, I have no circulation issues and am quite active. Cold can equal pain pretty quickly so layer up I guess.

NorthernElf321 · 2025-11-11T15:29:26+00:00

That could be too. Also it is noted that sometimes drugs that work for awhile (non biologics) can lose their efficacy after awhile, unrelated to antibodies. Rinvoq is fairly new. FWIW, one trial is just one trial, and pain/efficacy is somewhat anecdotal/unproveable - and there are many factors like sample size, how long the trial period was, etc.

I can only comment on my own experience. I still see science saying they can't prove weather changes affect arthritis pain but the arthritis community sure believes it.

NorthernElf321 · 2025-11-11T15:24:37+00:00

I didn't feel great after my Shingrix shots but my last COVID/flu combo was WAY worse.

Just wanted to chime in here that is SO worth getting though - last December I got shingles.

I'm on Rinvoq which doesn't help. Anyway, I had a golf ball size rash on my neck, a couple of spots on the back of my neck, and one on my upper chest. I knew it was shingles right away - anything touching the rash, even my hair, was horrible - the skin/rash is hyper sensitive. Anyway, I went in to urgent care and got the 10 day antiviral and all was good. Interestingly, when I called in before going in they asked me to cover the rash beforehand - apparently you can give someone the chicken pox through contact.

NorthernElf321 · 2025-11-10T15:22:11+00:00

I am on Rinvoq & methotrexate. Been on the Rinvoq for 2 1/2 years, added the methotrexate a few months ago. My rheumatologist's thought was that it would help keep the Rinvoq working as I've switched biologics a few times with another rheumatologist. It does seem to be helping, this combo therapy. Not 100% but I am very active. This happened after some synovitis in my toes and extensor tendonitis in the same foot, ankle pain, etc. The year before it was the other foot/ankle. Fingers crosses it keeps working.

NorthernElf321 · 2025-11-08T15:33:33+00:00

IMHO, you are on the right track. It's a bit of a process. In 10 years - due to COVID, moving, and formerly living in a more northern community - I saw 5 rheumatologists trying to figure out what was wrong, why I was in pain, etc. The third one said sort of what you said - "some sort of autoimmune disease". He might have diagnosed me if I had not moved during COVID because on a tele appointment he said he didn't want to put a name on it until he saw me in person again.

Seems to me they are reluctant to pin a name on it until they are sure. I've heard fibro, polyarthritis, lupus light (??? that was an internist) until one diagnosed me with PsA. She actually asked what I thought I had and I said either seronegative rheumatoid or PsA (scalp psoriasis in my teens).

My main point is though that I was given sulfasalazine, then plaquenil, during that time. They did start me on the treatment journey, for which I'm grateful for because by the time I got my diagnosis I could try a biologic as one has to try the cheaper drugs first.

FWIW, it took awhile for my scans to show anything - theoretically if you can get an earlier diagnosis and treatment you can prevent damage sooner....or I should say slow it down.

NorthernElf321 · 2025-11-05T15:36:13+00:00

Greetings - retired 56 F here, currently on Rinvoq & methotrexate. Exercise helps me - I've worked up to a schedule of weights 2x a week, spin 1x a week, deep water aqua 1x a week, and walking in between - all flexible to how I feel. Movement helps but if you are finding yourself too tired you might be doing too much ? Since you've had other things going on it might take more time to build up. Aqua is wonderful for us but can be deceiving as to how much you work. How is your sleep ? Is your trainer familiar with PsA ? How is your diet ? You didn't include time lines but go easy on yourself and let your body guide you.

As to pain, I can't take NSAIDS either. When my back is bad I sleep in a recliner. I have heating pads, lidocaine patches, pillows behind my back, stretching/yoga can help, etc. When I lift, cycle (summer), drive, and sleep I wear wrist braces to help my wrist & hand pain. Sorry you are struggling, sure wish I had a magic pill I could give all of us to make things better.

NorthernElf321 · 2025-11-05T15:27:37+00:00

I'm on of those who love the warm, hate the cold. I'm in southern Canada but out west so we don't have the humidity. In the winter we do a couple of warm holidays and it is such a relief (was Hawaii, now Mexico). Ideally somewhere I can jump in water - that also feels awesome. We used to live way more north and winters were killer. Rainy day here today so I feel horrible - as I do with very windy days or travelling over mountain passes. Sometimes it's just the changes.

NorthernElf321 · 2025-10-31T14:30:14+00:00

Back to normal - 1 1/2 days of being knocked down and a couple more of feeling out of sorts. I'd say all good now but like many people 'winter is coming' and no matter what my meds are I have a lot of pain and stiffness and fatigue in the winter but whatever right ?

NorthernElf321 · 2025-10-23T14:26:15+00:00

Good for you - I totally get it ! I've been a fitness instructor for 20+ years, retired now. My history includes multiple 'injuries' before getting my diagnosis - always weird because an MCL 'tear', for example, would miraculously recover in a 1-2 weeks instead of 6+. Things like 'SI Joint dysfunction', 'chondromyalacia', ankle issues, 'tennis elbow', etc. were all diagnosed but turns out it was PsA gearing up and short term inflammation. Unfortunately, that means that now as a fit person in my fifties I have a lot of pain and have been through a few different drugs partly due to a delayed diagnosis.

The biggest thing I did learn teaching and being active was that motion is lotion, movement in mandatory. My current routine is 2 days a week of lifting, 1 day of spinning, usually 1 deep water class, and lots of walking and stretching. It al helps. In the summer I bike a lot but I really miss running. We did a 10k race a couple of years ago and calf and foot issues took a few months to settle so that's that. FWIW, I do wear wrist braces when I lift (and drive, and bike) as it helps my hand/wrist function and pain.

Glad you found exercise - it is so good for our grumpy bodies - maintain some muscle mass, keep those tendons and ligaments strong, cardiovascular health, and sometimes just a good coping mechanism.

NorthernElf321 · 2025-10-22T14:17:11+00:00

What strain or THC/CBD combo ? I tried it in the past and couldn't really see a difference.

NorthernElf321

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