I have a question

Does psoriatic arthritis always flare? Or does it ever not get better? I have been struggling with pain since May but have been unable to walk going on 6 weeks. I am wondering if this is a flare. Do you always have to stay on meds.?

It’s a question that a lot of people have. While people with RA may go into complete remission and may even be able to come off meds, this seems less likely for PsA. That doesn’t mean that you can’t have a partial remission with meds. There are quite a few people here who have had fantastic results from meds.

Flares can last for a stretch of time. If I remember correctly, you just started a biologic in the last two months? It can take time to see improvement, but I encourage you to keep your doctor in the loop with both your symptoms and your concerns. The first med that you try may not work for you, or you may need it in combination with another med.

I asked my doctor about the remission question a while back, a few years post diagnosis. For me, she said that remission wasn’t going to happen. Disappointing, but better to have a realistic outlook. I’ve had ups and downs, stretches where I feel pretty good and stretches where I’m struggling. I’ve had all sorts of meds and changes too over the last 8 plus years.

I tend to think that once symptoms start, they typically don’t go away without meds. There can be better days–I used to write “feel good day” on my calendar whenever I had a rare day I had less symptoms. I noticed a lot of us, in hindsight, see episodes of weird, unexplained pain and inflammation at different times in our life, long before our PsA was diagnosed. I had lower back troubles in my 30s, plantar fasciitis at 40, heart problems and asthma late 40s, IBS, more back problems, neck pain and finally the “real” PsA symptoms in my early 50s and PsA diagnosis at 55. But I never thought of my inflammation, fatigue and all that stuff as severe and I kept telling the doctor I wanted to wait on the meds. It was severe, though, and caused irreparable damage, especially in my feet and back. Like you, I have painful feet–I’m not in a wheelchair–but there were days I could barely walk. For me, it now actually helps to use my feet as much as I possibly can to keep them limber and strong (no long hikes or anything like that) and I tend to have more pain when I sit down to relax in the evening! That’s when they start burning and cramping, and when I stand back up again I can barely walk for the first few steps!

I’m on enbrel and I believe it’s working well. My feet hurt because they’re damaged.

Hopefully, your meds (or biologic?) will start working, and when it does you won’t mind being on it because you’ll feel better. As far as your feet, have you done any physical therapy or been recommended for good, sturdy comfortable shoes? My doctor advised me to get really stiff shoes so I wouldn’t bend my feet as much, so I bought New Balance 847s and they are the most comfortable shoes I’ve ever had.

Sorry you haven’t reached a good place as far as symptom relief goes, but you’ll get there!


Thank you Stoney. I am trying to be patient and let the meds. work it is hard though and I am really struggling to keep working and try to do all I did before like you I just want an honest answer. My doctor never really explained these diseases just said I had them and I needed to start on a biologic. I have an appointment tomorrow and have lots of questions.
Stoney said:

It's a question that a lot of people have. While people with RA may go into complete remission and may even be able to come off meds, this seems less likely for PsA. That doesn't mean that you can't have a partial remission with meds. There are quite a few people here who have had fantastic results from meds.

Flares can last for a stretch of time. If I remember correctly, you just started a biologic in the last two months? It can take time to see improvement, but I encourage you to keep your doctor in the loop with both your symptoms and your concerns. The first med that you try may not work for you, or you may need it in combination with another med.

I asked my doctor about the remission question a while back, a few years post diagnosis. For me, she said that remission wasn't going to happen. Disappointing, but better to have a realistic outlook. I've had ups and downs, stretches where I feel pretty good and stretches where I'm struggling. I've had all sorts of meds and changes too over the last 8 plus years.


Thanks Grandma J I have not had any care really specialized for my feet yet. My rheumatologist is just trying to get the meds. working at this point. I have had extreme pain my feet for 10 weeks now going on to my 7th in the wheel chair to get around mostly. My left foot is worse than my right but I can hobble on my heel a little and do a little to keep moving but then my ankle and hip start to hurt then I do the wheelchair or scooters at work once that starts. I have an appointment tomorrow and want a referral to a podiatrist. I know I have the sausage toes and enthesitis but other than that I do not know what else is wrong with my feet. Thanks for the advice on the shoes right now I only have one pair of sneaks that fit they are wide and half a size too big and still leave marks on my foot because it is so swollen.
Grandma J said:

I tend to think that once symptoms start, they typically don't go away without meds. There can be better days--I used to write "feel good day" on my calendar whenever I had a rare day I had less symptoms. I noticed a lot of us, in hindsight, see episodes of weird, unexplained pain and inflammation at different times in our life, long before our PsA was diagnosed. I had lower back troubles in my 30s, plantar fasciitis at 40, heart problems and asthma late 40s, IBS, more back problems, neck pain and finally the "real" PsA symptoms in my early 50s and PsA diagnosis at 55. But I never thought of my inflammation, fatigue and all that stuff as severe and I kept telling the doctor I wanted to wait on the meds. It was severe, though, and caused irreparable damage, especially in my feet and back. Like you, I have painful feet--I'm not in a wheelchair--but there were days I could barely walk. For me, it now actually helps to use my feet as much as I possibly can to keep them limber and strong (no long hikes or anything like that) and I tend to have more pain when I sit down to relax in the evening! That's when they start burning and cramping, and when I stand back up again I can barely walk for the first few steps!

I'm on enbrel and I believe it's working well. My feet hurt because they're damaged.

Hopefully, your meds (or biologic?) will start working, and when it does you won't mind being on it because you'll feel better. As far as your feet, have you done any physical therapy or been recommended for good, sturdy comfortable shoes? My doctor advised me to get really stiff shoes so I wouldn't bend my feet as much, so I bought New Balance 847s and they are the most comfortable shoes I've ever had.

Sorry you haven't reached a good place as far as symptom relief goes, but you'll get there!

Hi Scienceteach,

I know this isn't the answer you want right now, but you have to let the meds kick in. Right now they're fighting years of unchecked disease activity (as you well know because of your sausage toes, among other things). Once you're stabilized on a regimen that works to keep your disease in line then you'll start seeing improvements in reduced swelling and pain. But until that time, take it easy on yourself. If it is painful to walk or if you injure other joints in the effort to walk...stop! You can get back to fitness and agility when you're able to. With time and a great doctor who shows a willingness to collaborate with you on your treatment, you'll have more of the better days.

This disease is sneaky and tricky. Sneaky because it sometimes creeps up on you without you noticing and you realize you've been in a downward trend for a few months. Tricky because you might not know from day to day whether this is a good or bad day. Even now that my disease is really well managed there will be a day or two of massive fatigue or weird swelling or a really odd ache or pain. But they're few and they're short-lived now.

I used to worry about taking drugs forever. I don't now. I know they are as much a part of my wellness routine as drinking lots of water and limiting my consumption of Cadbury Mini Eggs.

Wishing you patience and perseverance as you wait for relief. In the meantime, if you really want to move, can you take a trip to the pool?

Jane

Scienceteach, we empathize! You are in what we call "The Gap" around here: the awful period between diagnosis and when your treatment starts to work. Most of our treatments take three months or longer to "get traction", so if your rheum doesn't see improvement after three, s/he will switch the potion and try for another three. That means that most people have a "Gap" of at least three months, and some considerably longer. After three months, if you find yourself on treatment that works, you may still find that you have slow improvement for months afterwards. When the treatment stops working, you're looking at a gradual deterioration as well. It's all very difficult. And we've all gone through it.

At the risk of repeating myself, have you ordered your copy of Psoriatic Arthritis: the Facts, by Gladman and Chandran? Mandatory reading, most of us reckon. Quiz next week. (Kidding, of course!)

I totally agree with what everyone here has said about remission. Don't count on it, but who knows, maybe it will happen. Most of us are just grateful to feel much better than we did before. When I got to the "feeling much better than I did before" stage, I was well enough to have gone back to teaching. The trouble was, by that time, I had no job to go back to. But really, I felt far better than I had when I was in the classroom and coping. So, while complete remission would be nice, "feeling much better" is is sweet as well. You will find your way through his.

I feel sad when I read about you in your wheelchair, but there is a lot of good news in your story too. You have a rheumatologist who has cut to the chase and started you on aggressive therapy without delay. You have a job, and in all likelihood you will find yourself fitter and more capable of doing it (and enjoying it) than you probably think is possible now. Give it some time. The pain in your feet is, in all likelihood, from inflammation. Inflammation can damage them, but that doesn't happen over six weeks or even, I'm guessing, over six months. When your rheumatologist gets the flames under control, you'll start feeling better.

Jane is telling the truth about exercise. I know it's hard to exercise when you're not able to be on your feet (I have severe foot damage, but mine is the result of many years of undiagnosed PsA) but the pool is the place for you (and me). Get into waist deep water and stretch, and then walk back and forth. Find a flotation device, and bob in the deep end while you "cycle" around. Stand in chest deep water, and do heel raises to move your feet gently, while the water pressure reduces the swelling a bit. Even half an hour of movement will make you feel generally better, soften the pain, and certainly sleep better. I'm sure you have a friend or a colleague who would be willing to get wet along with you, and you'll be able to talk about all those things that teachers talk about after school. ;-) BTW, I'm not sure about Jane's limiting her consumption of Cadbury Mini Eggs. She is addicted you know, and each year she gives up moderation for Lent.

You know what you say to students who are having a difficult time. You will get through this.

Completely agree with seenie - what great advice! My feet have been incredibly painful and inflamed for over a year and a half! First right foot, now left more than right! Despite this, x-rays showed only minor damage to left foot, so if I can just get the inflammation under control, I should be good! I’m sure yours will be similar. The pool and ice baths helped my feet a lot - walking too much did not!! I also had steroid injections in both feet which gave me 3 months of massively reduced pain.



I’ve just started humira today so am keeping everything crossed …



I still believe I could go into remission, but am becoming more realistic and just hoping for treatment to enable me to live without going ouch everyday or having frequent flares which floor me - I think you’re in a bad spot right now but I’m sure it’s going to get better xx

Ps the ugly shoe thing still depresses me the most …

I hope both of us will have relief from the foot pain. Thank you everyone for all of your support and answers. I know I just have to wait this out and be patient. I hope my gap is quick.

Scienceteach, I don’t want you to fret about my foot horror story. My feet are a mess (the exact words of my new rheumatologist) and irreparable, but what you need to know is that I had foot pain (and periodic x-rays) for eight years before an x-ray showed any joint damage. Golfnut has been dealing with this for a couple of years, and hers hurt, but they are still OK.

Your rheumatologist is doing the best s/he can right now. I know you are in pain, but don’t make things worse by worrying about something that probably won’t happen. When your rheum gets your inflammation under control, things will be looking up. Have you asked about having a steroid injection to give you some temporary relief? I don’t know about where you are, but in the UK that is standard procedure at the beginning of inflammatory arthritis treatment.

I hope your gap is a short one too!

Hey Scienceteach

You are definitely not alone in this,I'm currently in ''The Gap" as well,and am going to take the advice of all these lovely people on here who have been there and done that.We are at last finally diagnosed and on treatment,it can only get better !

Ouch, I love your attitude! As you say, it can only get better. You and your rheumatologist just have to do what you have to do, and things will start looking up soon.

Not always. But it can, and it can be debilitating. Some days I have to walk with the aide of a cane, others I am at the fitness center doing laps around the track. It never goes away, but can be in remission. I had a spectacular remission this summer that lasted about 5 months(longest I have ever had) I still had the Remicade Infusions and took my Norco,of course, but it was pure heaven. It's a crazy-ass disease and after 35 years you would think I would be used to it but nope. You just never know.

Best of Luck.

Just FYI, Humira is a great biologic, good luck.

Golfnut said:

Completely agree with seenie - what great advice! My feet have been incredibly painful and inflamed for over a year and a half! First right foot, now left more than right! Despite this, x-rays showed only minor damage to left foot, so if I can just get the inflammation under control, I should be good! I'm sure yours will be similar. The pool and ice baths helped my feet a lot - walking too much did not!! I also had steroid injections in both feet which gave me 3 months of massively reduced pain.

I've just started humira today so am keeping everything crossed ....

I still believe I could go into remission, but am becoming more realistic and just hoping for treatment to enable me to live without going ouch everyday or having frequent flares which floor me - I think you're in a bad spot right now but I'm sure it's going to get better xx

Ps the ugly shoe thing still depresses me the most ...

Thank you Erin’s mum - really hoping it helps xxx

Erin’s mum
I love your label, “this crazy-ass disease”. Indeed it is! And its crazy-assness is what prevented so many of us from getting a solid diagnosis when we should have had it.
So nice to hear about a five month respite! Maybe you’ll get one of those this year as well. Hope, hope, hope!

Golfnut, the ugly shoe thing wil always depress me the most.

Hope is a beautiful thing.

I have often found it quite terrible… :frowning:



Scienceteach said:

Hope is a beautiful thing.

I have an mri of my left foot this week and upcoming podiatrist appointment hope that helps and going to up methotrexate soon too. Hopeful to get past this gap.