I have a question. Over this last year plus I have done the methotrexate, steroids, humira, and now remicade. The Humira worked but not well, with lots of long flares. I gave it 7 months. I am definitely feeling better recently with the Remicade infusions, scheduled for my 4th one in two weeks. My question is to those who have been dealing with PsA for a long time, when do you decide to say "I'm better, enough" with meds. I have noticed many discussions about good days and bad days, Days where you can do more, and days when you can do less. I understand the flares, and treating them with predisone taper. But do you accept living with some pain daily, and some bad days, or do you keep trying to be mostly pain free. For example, my knees, wrists, elbows and shoulders are better. But I still have daily pain and some minor swelling in my right hand, right elbow and ankles. Is this acceptable. I feel my pain level is tolerable most days, and I don't feel like the pain is making me crazy in the head anymore. Does one keep searching for a med that takes away all the pain and swelling, or just stick with one that mostly helps? Is remission a good goal? Thank you for advice from those living with this longer.
I do accept pain. But I may or may not be typical. The pain concerns me far less than what the disease can do. I may or may not be able to determine whether the pain is from "damage" "disease" or "life" so long as I have meds on board that I know are being effective, I'm happy. I do not use predi, narcos, or routine NSAIDs. except in very rare and serious circumstances. Everybody with or without PsA has good days and bad days, especially when you watch these folks on the TV antique shows getting positively giddy about their Mid Century finds at flea markets. I've been hanging around flea markets hoping this mid century relic may get take home by one of those young things.
I try to keep busy living life and spending as little time dwelling on my disease as possible. That makes the biggest difference to me. Hard to do when I spend as much time with Bens Friends communities and Projects as I do. My granddaughter who also has PsA just list her cell phone for a week again because she pulled out her "pain journal" at her rheumy appointment today. FWIW the doc said if she was mom it would be TWO weeks........
I do accept the fact of some pain simply because I feel so much better than I did before I was diagnosed. I'm not sure how long I did very little other than work and come home but it was years, not months, before beginning MTX. When I started MTX, the exhaustion was gone but because I never got rid of the GI side effects, it was another year (after I started Humira and went off MTX) before I began to regain a life where I did more than go to work, sit on the couch and sleep.
I feel so well that tomorrow evening, I'm attending my first Arthritis Plus swim class at the Y. When I saw my rheumy two weeks ago, I was able to tell him I feel better than I have in the last 6.5 years. He got the biggest grin. I like that. :-)
I inject every ten days. I had a bad day Sunday and a bad weekend two weekends ago, both of which were 8 or 9 days in to an injection cycle. I think the bad days are because I missed two doses of Humira (bronchitis and then cystitis, both of which required antibiotics). I know--because I've done it before--that another couple of doses will get me to the point where I can again go ten days with little to no pain, rather than feel a distinct downturn about 8.5 days in.
I'm not searching for another med until my body tells me I must. Remission would be nice, but I'm not counting on it.
I had left shoulder replacement surgery in 2013. The bionic arm is giving me fits with soreness, pain and swelling. It may be PsA but I'm inclined to think something else is going on. I see the new shoulder ortho on June 5. I wish he could "fix" whatever it is as well as my rheumy has given me back my life. I'm not counting on that either.
Thank you for commenting - this gives me hope. I’m still in diagnosis stage and 4 years in. I get through a day of work and come home to just continually search for a rest position. The rheumy tells me MTX will not help PsA that is in spine/hips. He has documented skin lesions and elevated markers so I am hopefully on the road to finding some relief. Thanks again for your post - I know I’m not alone in this journey.
I think I’m at the good enough point. I was diagnosed eight years ago, and started a biologic over a year ago. I have ongoing pain but mostly it’s not enough to slow me down too much. When it gets to the point that it is problematic on a day to day basis over time, I deal with it.
Tallulah, Thanks for asking the question! I've been wondering this myself! :) Also, I am so very glad you have a Rheumy that is documenting so well and listening to you. I have not been so lucky and am switching soon....hopefully with better results. :)
Tallulah said:
Thank you for commenting - this gives me hope. I'm still in diagnosis stage and 4 years in. I get through a day of work and come home to just continually search for a rest position. The rheumy tells me MTX will not help PsA that is in spine/hips. He has documented skin lesions and elevated markers so I am hopefully on the road to finding some relief. Thanks again for your post - I know I'm not alone in this journey.
I agree with lamb, and I'm not sure I'll ever be pain free. I also do not take the prednisone tapers and only minimal OTC pain pills. I feel like I can tolerate a lot of chronic pain. I actually think some of the bad pain I've endured over this past year since starting Enbrel, I would not have made it through had I not been on Enbrel. Enbrel "cured" the stiffness, weakness, tendonitis and fatigue so much so that it's easier for me to tolerate the pain I have from damaged joints.
Keeping busy (unless your pain is horrendous) is a really good way to ignore your chronic aches and pains.
An interesting question and one where I'm not 100% sure of my answer, for me it's a question of what is acceptable where in my body in relation to how it affects my quality of life and what I want to be able to do.
If it wasn't for the pain in my feet and sometimes my knees I think I'd say yeah, this isn't perfect but it's plenty good enough, I can live with this. But my feet and mobility are central to everything I want to do in my PsA re-adjusted life, even if it's only standing (or hopping on/off my stool) to cook dinner. It often doesn't take very long before the pain completely takes over and all I can think about is sitting down .... so where this is concerned I'm still in a place of needing to know whether it is damage or disease so I can decide whether to pursue a different treatment which might improve it. BUT what I would say is that I'm not prepared to risk what I have with my current medication without having the damage vs disease information.
All I want is to be the best I can be and when I'm certain I've reached that point I will live with what remains. I don't take regular NSAID's, pain relief or pred either.
Jules- you pointed out that the question is typically whether it’s damage or disease. That is typically the question for me as well, so I know what to do about it. For example, whether to rest, seek physical therapy,etc.
Stoney, yes, I've come to realise that damage or disease information is central to informing me about what to do as well.
I get so frustrated here in the UK where NHS funding issues get in the way. I have to believe this is the problem rather than gross incompetence on the part of the medical staff.
I've recently been refused x-rays on my feet to investigate what is going on but yet they were happy to make a referral to a podiatrist. What? I just got more angry at that because to get the best from a podiatrist they also need to know whether they are tackling a structural bone or soft tissue problem. I don't seem to be able to get through to them that I'm losing my mobility and action is needed while there may still be opportunity to alter the outcome. As a result I'm paying to have imaging done privately but then there is the issue that my baseline images are NHS so possibly not (easily) accessible to make a comparison which might be essential in spotting erosion.
Anyway I digress from the OP!!
I would go with “good enough” with the qualifier being “good enough” = “doesn’t interfere with my daily activities/routine and allows for comfortable, regular movement”. I’m not there at the moment, hoping that the new meds I’m on will do the trick and I can return to yoga and maybe work on losing the extra 20 I’m carrying. But I also agree with the other folks, not much that can be done for damage, way more for disease pain. And if you’re still in considerable pain, and it’s not from irreversible damage, then striving for better would be my personal option.
Thank you everyone for your responses and wisdom. It is all very helpful. I read each response twice.. Can I function daily with minimal discomfort is the question now in my mind. I am gaining some acceptance that I might not be able to do everything I used to before PsA. Also, didn't think about the two types of pain - irreversible damage vs. disease pain. I don't think I'm quite there yet - not good enough, but very hopeful the Remicade will continue to help as I receive more infusions. Thanks for being there.
I've been diagnosed and in treatment about three years now. A LOT of damage was done before I got the diagnosis. Unfortunately, we're still discovering the extent of it.
Just for me, my irreversible damage pain is different from disease pain. Disease pain tends to be achier and of shorter duration. Irreversible damage pain hurts and is of longer duration. Flare pain burns. Flares are also the only time my thumbs get stiff. Like I said, though, that's the way my brain registers what's going on.
The one thing of which I am certain with PsA is that nothing, no matter how effective the treatment, is going to return me to my pre-PsA state. Once I understood and accepted that it has been much easier to focus on working towards the level of symptoms and pain that I can live with but still have a good quality of life.
It's finding the balance between hoping for the best but not being so unrealistic that I'm setting myself up for constant disappointment because my goal was never, ever going to be achievable. This is tough enough without throwing my energy away in pointless pursuit.
I’m so happy to have picked up this thread! Thanks everyone! I see that many of you still work, despite the exhaustion/pain. My question is, when life becomes 1. Work, 2, recliner, 3. Bed on weekdays & 1 catch up house/chores, 2.recliner, 3. Bed on weekends, is that life? I in the Dilemma of choosing to try for disability because we depend on my income to run household. Plus, work is such a huge part of my identity, who would I be if I no longer work? It’s a very emotional process on top of the physical. Any thoughts?
MamaO, I hear you! This is my reality exactly and have another appointment next week hoping to discuss this too. I am very interested the response from long term PSA patients. You might post this question as a whole new discussion. That would give it a searchable title later and Responses from those who may have skipped the previous topic.
Well life on disability is the same EXCEPT no work. Just more recliner. You live on 800 bucks a month or less as you still have to pay medical expensese. Sadly the pain doesn't go away and for many the disease gets worse. There are times when FMLA is approriate. Disability without other conditions is very difficult to get and is a years long process. FWIW the SSA worker in my community is a quad who taps out stuff with a soda straw in his teeth.
It does get better, for most. For others its a matter of adjustments. For me I ended up doing reasearch and teaching. It turned out better than I could EVER have imagined.p>
MamaO said:
I'm so happy to have picked up this thread! Thanks everyone! I see that many of you still work, despite the exhaustion/pain. My question is, when life becomes 1. Work, 2, recliner, 3. Bed on weekdays & 1 catch up house/chores, 2.recliner, 3. Bed on weekends, is that life? I in the Dilemma of choosing to try for disability because we depend on my income to run household. Plus, work is such a huge part of my identity, who would I be if I no longer work? It's a very emotional process on top of the physical. Any thoughts?
I am having trouble getting anyone to do x-rays or MRI to see / show the damage so we can track it....suggestions??
sixcatlawyer said:
I've been diagnosed and in treatment about three years now. A LOT of damage was done before I got the diagnosis. Unfortunately, we're still discovering the extent of it.
Just for me, my irreversible damage pain is different from disease pain. Disease pain tends to be achier and of shorter duration. Irreversible damage pain hurts and is of longer duration. Flare pain burns. Flares are also the only time my thumbs get stiff. Like I said, though, that's the way my brain registers what's going on.
I wish I had suggestions. My history is that I have a fantastic rheumy who LISTENS to my descriptions of what has changed or what is new and goes from there. I have decent health insurance, thank God. I'm also very fortunate that my rheumy, shoulder ortho, hip ortho, ENT and endocrinologist all work for Lexington Clinic. My rheumy recommended all of those folks, all of whom my husband and I trust, thank heavens.
The rheumy ordered x-rays of my feet when I described what was going on. This was about 2 years after diagnosis, so I have no idea whether anything was there before diagnosis or if this is progression. I haven't had another set done because the pain is mostly negligible and easily treated with soaks in hot epsom salts water, massage or maybe taking Tylenol or aspirin for a day or two.
On the other hand, I was diagnosed about 1.5 years after my left arm/shoulder and knees showed damage. Therefore, I have x-rays from 2010 which show the beginning damage. I had another set of x-rays of my knees this past March. You can see progression, even though my left knee is nowhere near as bad as my right.
I've had two MRIs--after diagnosis but before I had left shoulder replacement surgery in 2013--which show progression. I'm expecting another one in the near future because the bionic arm is giving me fits and swelling.
Frankly, because I had no pain until I fell out of the shower in January, I thought my right arm/shoulder were unaffected by PsA. X-rays (January) and MRI (February) show otherwise. No idea what was there pre-diagnosis and treatment.
I didn't have hip trouble until after diagnosis, but I have a set of x-rays from 2013 when I first had trouble and the rheumy ordered them to see what was going on and another my hip ortho ordered earlier this year, which show progression.
Yes, me too sunshine!
What I have discovered, in the UK at least, is that private x-rays are not horribly expensive so I've been able to ask my primary care physician/general practitioner to do the required referral - a much easier decision for him as he's not having to justify the expenditure. Something I've also done in the past is have another of my practitioners do a referral for me so if you see a physiotherapist, chiropractor, podiatrist etc they may also be able to help. I also discovered this week that (again here in the UK) at some private clinics I can self-refer for MRI's.
As I understand it the radiographer does the actual imaging but then it is reviewed by a radiologist who issues the actual report .... and this is all part of the one action. Once you have the report you can then provide a copy to your rheumy for discussion at your appointments.
It is far from ideal, far indeed, but I've come to realise that sometimes the system isn't all it should/could be and we don't all have access to gold standard care that you get at specialist PsA centres. That would also be my other suggestion, see if you can access a centre of excellence/research centre for PsA.
sunshine said:
I am having trouble getting anyone to do x-rays or MRI to see / show the damage so we can track it....suggestions??