I’ve just completed 8 weeks of Humira without side effects. I may be seeing subtle changes for the good but pain overwhelms those “maybe’s”. How do I know if the PsA in my knees and feet (other areas just ache) is causing damage or “just” pain? I am concerned that having the same joints yelling loud and clear for a couple of years might be leading to permanent damage. I suspect that due to the cost of MRI’s and fancy ultrasound, the medical approach is “what difference does it make if you know”? The treatment is the same. So, I guess I’m asking, what tests and signs are sound evidence of damage?
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Well even a simple x-ray could see any damage. And a MRI could do too in better definition. When PsA first hit me the hardest thing for me to understand and get my head around was how come the pain moved around and how on earth if it caused this much incapacity wasn’t there consequent damage?
I remain it seems, from simple x-rays and MRI’s and CT, PET scan (for other issues) that I don’t yet have permanent damage from PsA to date. I credit that to being diagnosed quickly and therefore treated quickly. Even if most of those treatments now totally 5 different meds didn’t really work. Only two of them have, the present one I’m on - Cosentyx and around 2 years before I started that, sulfasalazine. So over 4 years of treatment I’ve had 7 months of sulfasalzine working for me and now nearly a year of Cosentyx. The rest of the time I was being medicated but none of them were working as in lessening pain and increasing capacity.
When is your Rheumy review on humira? It should be around 12 weeks? Why not ask then? It’s a reasonable question and worry @Amos. I was always fascinated the level of pain and incapacity I could suffer didn’t appear to ‘damage’ much of anything.
However that’s not the case for everyone at all. Those with an acutely virulent PsA seem to do a lot worse and those who have being undiagnosed for years also fare worse.
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I was always told that prolonged swelling is a red flag for potential damage, far more so than pain. I had very swollen knees and could therefore gauge the effectiveness of treatment by the gradual reduction in swelling. After 3 years of mega-knees, Humira returned them to normal within a few months. That certainly boosted my confidence in the drug and I can’t remember if pain decreased as rapidly, I think that was a slower process.
There again, some affected joints don’t show swelling so obviously - hips or SI joints for example - so I guess pain reduction has to be an indicator there, even if not a very good one.
I do not have the degree of damage that doctors anticipated at first, but I have some. I know what has happened to the joints that have been x-rayed and scanned but there are a lot of joints in the body!
How about joint stiffness, has that decreased? Can’t remember, have you had some imaging done and, if so, did it show any damage? I’d just add that sometimes imaging really isn’t all that - I’ve had great joints, allegedly, after an x-ray, rather damaged ones 6 months later. I gather it’s not always easy to spot until it reaches a certain point.
Whether or not a biologic is protecting joints / continuing to protect joints is a question a lot of us ask I think, at all stages of treatment. Imaging, swelling, stiffness, pain … they’re all factored in. I reckon you need your new rheumy to do some serious prodding, his view will be the most valuable.
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I have no visible swelling in my hands or feet and slight swelling of the knees. I see the rheumy in the first week of December. If I drive or sit for 20 minutes or more, stiffness combined with pain is still a factor. I think that my fatigue is less as of lately but I get walloped with a flare that could be a few hours or all day. When it calms down, my usual optimism sets in, “I’m healed”! (slow learner)
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So glad there is another optimist about. Whilst I don’t think ‘I’m healed’ as such I can think ‘this is great I feel loads better’. And even sometimes I can think ‘do I really have PsA?’. Sadly I am usually reminded I do though but I do catch optimism fast. I’m good with that.
To put it another way @Amos, it will mean you know when a med is working for you. That’s for sure. And I hope you get to where I am presently which is without a doubt are my present meds working well.
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Hi Amos,
I wonder the same thing. I was recently on Humira for about 4 months and after month three I started feeling much better. I assumed it was the Humira. A few weeks later I was taken off the Humira for a possible allergy (not looking like that was the culprit now) and I’ve been off Humira now for almost 3 months. I’m still ok. Makes me wonder if it was the Humira that put me into remission? Or was my body healing and I’m cured! (Like you, ever the optimist!) And then I wonder can I have damage without feeling anything?
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I sometimes wonder (hope) that as unexplainable as the original cause of autoimmune diseases are, they might disappear without any known reason. I guess history doesn’t support that but there are many mysteries regarding our weird disease. And we don’t know how many have experienced full remission and aren’t using any meds. I haven’t experienced enough relief that I can absolutely say that the Sulfasalazine, methotrexate and Humira are working but I’ve come this far and don’t think I’m ready to see what I would be like if I went off everything for 6 months. I was at my best when maintaining with low dose prednisone around 7.5 -10 mg. That’s the last time I felt “good” but that road has its hazards as well known by many. For now, I hold this course to give Humira a fair chance. Now that my new normal blood pressure is at 135/85, I’m scared to use Celebrex which adds heart risks and Celebrex was my only pain relief. I have a consistent history of BP of 107/70 but that changed in the last 18 months.
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I believe PsA waxes and wanes but I most certainly don’t believe in any cogent ‘remission’ from it. Never!
Watch that BP @Amos. Us optimists are prone to insiduous stressors solely due to our optimism too sadly.
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Good point @Poo_therapy, thanks. I have my annual physical in a few days and will have a discussion about all things with my GP. Our area is under a “red” lockdown due to cases of Covid increasing rapidly. I suspect that it could be a dull Christmas season that will put many businesses under.
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Good that the Humira is working for you. I just restarted it. I had been on it for 6 months before March. I had to stop it in February because they thought I was going to have surgery on my neck. That didn’t happen, then COVID came and I never started it back up. I did okay for about three months, then it set in my hands, knees and feet bad. I have been back on it once a week for my 4th week now. I know it will take sometime to work again. I take it once a week because every two wasn’t doing it. I can’t take MTX or NSAIDS, so they decided I could have it every week.
Now I just wait for it to kick in more. None of the biologics has made the PSA “go away” They just seem to get it down to a dull roar so I don’t have to take so many pain pills. Working from home has sure helped a lot. If they ever make us go back to work, I am going to retire, but they may be summer.
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So my annual physical came and went. For about a month I have been taking my blood pressure after 30 minutes at rest, not after a meal and no coffee and was averaging around the 136/86. My BP usually goes up while sitting in a doctors office while naked in a flimsy gown anticipating that other exam. I raised my concern with the GP so she took my BP …it was 122/82. No problem! I concluded that my BP machine must be wonky. 2 hours after my physical I checked my BP…123/82. Whatever…I’ll accept it as good news. BP, GP, PsA, MTX…glossary anybody?
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