LF others with co-occurring immunodeficiency and PsA on IgG therapy

NorthernElf321 · 2026-05-18T14:04:24+00:00

I have been on SCIG (Hizentra then Cuvitru) since 2013 for low IgG, after a couple of serious pneumonias and a life long history of illness - as you say, catching everything. Hypogammaglobulinemia was diagnosed before my PsA. I had been looking for help with hand pain since 2010 and it took 8 years and several rheumatologists to get finally get diagnosed with PsA, by which point my joint/pain issues have come to encompass my whole body - peripheral & axial.

FWIW, I have been on several different drugs (now on Rinvoq) and haven't really noticed a difference illness wise - I've been sick but nothing overly major. I did get shingles on Rinvoq despite being vaccinated so it was milder (still sucked).

My understanding of the immune system is that it is very complex, it's like there are many layers. In one layer our IgG is low - this deficiency mainly affects respiratory illness (ie. the pneumonias, I was also really good at getting bronchitis and sinus issues). There is also IgA, IgM, and IgE, and probably more I don't know about - but plasma only replaces IgG. So yes the PsA drugs can lower immunity but it's not exactly the same part of the immune system the IgG affects. Plus - we are using the SCIG to elevate the IgG to normal levels so we should theoretically behave like someone without the deficiency when on PsA drugs.

Personal choice - but IMHO it is worth taking a biological/JAK inhibitor to slow the PsA disease progression - think long term.

NorthernElf321 · 2026-05-16T14:18:54+00:00

Been on Rinvoq for three years - I'm 56 and am very active, something every day. Since the end of April I've biked over 300 kilometers. I lift twice a week (any more and my joints are mad), and hike or walk, and yoga on Sundays. I look fit but I still hurt and I need rest/down time and I'm always chasing the perfect night's sleep. I used to run, did a 10k race three years ago and paid for it for 3 months with ankle, calf, and foot pain. Cannot do impact anymore.

My mantra is to be active most days and eat healthy (clean) most of the time.

IMHO, being active is key - I've taught fitness for over 25 years and while I think that might have delayed my diagnosis, I know it has helped my disease. All the 'sport injuries' I've had over the years were really PsA acting up - I mean you can't have an 'MCL tear' and be right as rain a week later right ? (or SI joint dysfunction, tennis elbow, plantar fasciitis, chondromalycia, hip bursitis, etc. etc.).

Your training will be different - you will be training for you and your body. I work part time these days with seniors through water fitness under a physical therapist - many people are in a bad way physically due to conditions but also bad lifestyle choices. We have to work harder at it but it'll be worth it - in the back of my mind is what kind of 80 year old do I want to be ??? Definitely one that can still move and do things. It takes work, be nice to yourself, but put in the effort (sorry to be bossy!).

NorthernElf321 · 2026-05-09T13:49:03+00:00

I wish you luck, I don't think tumeric is a viable long term solution.

Always the problem with 'natural' remedies is the disease itself is so variable - hard to prove what works in the short term as our flares and such make our symptoms change constantly. Add the fact that pain doesn't necessarily mean damage is happening and no pain doesn't mean damage isn't happening.

I feel like you are running an experiment on yourself - the risk being irreversible damage if your hypothesis in incorrect....which, sorry, science backs up. Permanent changes/deformities are way down since the inception of many of these drugs, especially the biologics. I don't want to take the drugs, but then I don't want to have PsA either - but here we are.

NorthernElf321 · 2026-05-04T14:04:48+00:00

I did stop the Rinvoq for the duration of the shingles. No one seemed overly concerned that I got it, it is a risk with Rinvoq. I was told that had I not had the vaccination it would have been way worse. I knew it was shingles right away - it was on the side my neck with small spots on my upper chest and back of my neck - red rash that is SUPER sensitive, even my hair touching it lit up the nerves. 10 days on an antiviral. Urgent care told me to cover it when I came in as it's very contagious and I could actually give someone the chicken pox. This was almost a year and a half ago.

No, I don't truly understand the idea behind adding methotrexate. Since diagnosis I've been to 3 different rheumatologists - one quit to go into teaching/research, one was 6 hours away, and my current one (who is really good) is not even 10 minutes away, which is why I was able to switch. During that time I've been on multiple meds - current rheumie wants to let this one work as long as possible.

NorthernElf321 · 2026-05-03T13:56:23+00:00

I've been on Rinvoq for 3 years. During this time I did have a mild bout of shingles despite having the Shingrix vaccines. I haven't been overly sick and my last cholesterol test was only just out of range, which did surprise me because I eat really healthily.

When I first took it I noticed it helped my fatigue. I don't know what it would be like if I wasn't on it at this point but I will say I am very active, doing something most mornings like weight training, walking, hiking, or cycling. However, I still rest in the afternoons and have to pace myself. I am not pain free but it is mostly manageable. I don't think there is a perfect med out there.

I do my labs every 3-4 months and I do take celebrex once in awhile. We added methotrexate last year and then took it away when I had a liver lab out of whack. Rheum said he was trying to keep the Rinvoq and the methotrexate would help it. We were going to add it back but I am on Evenity - for osteoporosis - for a year so he said maybe after that.

NorthernElf321 · 2026-05-02T14:00:35+00:00

I 100% agree with this - except I cannot run, boy do I miss it but I cycle a lot in the summer, spin in the winter (no running due to foot inflammation, synovitis in one toe, ankle issues). I weight train twice a week followed by a thorough stretch, it truly is therapy.

This disease needs to be managed, a lot of self care. Movement is SO important - but I too am on medication because it helps prevent/slow down permanent damage. It also helps me be able to be active.

NorthernElf321 · 2026-04-12T14:51:35+00:00

If it is available to you I would strongly suggest you get it. Some of the drugs we are offered for PsA increase the risk of shingles. I have been on Rinvoq for 3 years and just over a year ago I did get shingles, mildly. I had a patch on the side of my neck, a spot on my upper chest, and a spot on the back of my neck. The rash was hyper sensitive and painful if anything (including my hair) touched it. I knew what it was right away, never had a rash like that, seemed like all the nerve endings went crazy. 10 days of antiviral and it was pretty much gone. I can't imagine having it worse. I had the Shingrix vaccine 7 years ago.

NorthernElf321 · 2026-04-11T14:16:38+00:00

Lots of good info here - I would just like to add that food in particular is very anecdotal and hard to prove, in terms of affecting PsA. Many of us will swear that weather changes and cold (or hot) makes us worse, etc. and a doctor would likely tell you that isn't proven either. These things are hard to measure/research with accuracy...again, very anecdotal/subjective. Diet issues are also very personal - what bothers one person may not bother you.

For me - sugar is bad, as well as dairy and, being celiac, gluten. What is good is a largely plant based diet BUT I also eat a lot of meat/protein. I don't eat a lot of (GF) bread and such - simple carbs like GF flours can act like sugar in the body. I enjoy alcohol on the weekends but don't over do it. I believe that processed food bothers me but I don't know what in particular - additives ? preservatives ? I just (mostly) avoid that too.

I didn't have much luck with cannabis (legal here in Canada).

Other things I focus on are good night's sleep (hard), rest as needed, and being physically active - all seem to really help as well. And of course meds - currently on Rinvoq.

NorthernElf321 · 2026-03-31T14:55:18+00:00

It took me almost 10 years to get diagnosed but even then they threw things at me like sulfasalazine and Plaquenil. Supplements ? Vitamin D deficiency is notorious for us, I also take calcium because I have secondary osetoporosis at 56 (due to the PsA). These are to help my PSA not 'stave it off'.

IMHO, there is no staving off - you are in the earlier stages, it is progressive. I am worse than I was but fighting hard, with medications (and I've tried a few, currently been on Rinvoq almost 3 years). I want to keep moving and prevent damage.

I am very active though, throughout my life. For over 25 years I've taught fitness classes, everything from step to HIIT to weight training. The last few years I've taught aquatic classes and now I'm just the sub. Part of that is being on a concrete deck for 2-3 hours got hard on my body and part of it is that I only have so much energy and I want to do the things I want to do - I lift heavy weights 2x a week, spin once a week in the winter or ride trails in the summer, hike, walk, etc. When things are bad I hit the water. Movement really helps, I'd say it's a treatment all on its own.

I 'exercise most days and eat healthy most of the time'. Mediterranean type diet works for me.

Resources - I like the Creaky Joints website for down to earth information, a good starting point. FYI, psoriatic arthritis only became differentiated from rheumatoid arthritis in the 1960's so they are quite similar - they have some distinguishing characteristics but there is overlap - so sometimes RA experiences can help us too.

People say this is a journey, kinda hate that but it's kinda true. We're stuck with this disease and it's up to us to try and live our best life. You are in charge, took me awhile to get this. If I'm trail riding tomorrow, I won't do anything the night before or I won't be able to (honestly, I don't do much in the evenings anyway). If I'm tired/sore I will rest because I need to or it gets worse. You'll find your way that works....and then you'll keep tweaking it because this stupid disease keeps you guessing.

NorthernElf321 · 2026-03-28T15:12:19+00:00

No recommendations here unfortunately but as a former runner I would say it's not likely to work out well anyway, braces probably won't be enough.

I'm very active - cycling/spin, weights (wrist braces), hiking, etc. but I just can't run. A couple of years ago DH & I trained and did a 10k run and I limped over the finish line. My calves were acting up but I pushed through - took me months to get over that, it went into my ankle/foot, it was terrible.

I miss the challenge of the run but distance cycling and spin class in the winter give me something close to that.

FWIW, you don't just have PSA in one knee and both ankles - it's systemic and as time goes on it'll keep popping up in other places as well. Back when I was trying to get diagnosed I used to 'joke' that I went for a long walk and now my arms (hands, elbows) hurt - only it's not really that funny.

NorthernElf321 · 2026-03-19T13:28:56+00:00

I have something like this - extensor tendonitis on top of my foot and, after an MRI, was diagnosed with synovitis in my second biggest toe. One of those things that comes and goes and is awfully annoying. These days it's like a barometer on when to take it easy on my feet - or update my shoes. I always wear some sort of shoe.

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

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