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Living with Psoriatic Arthritis (PsA)

Does anyone ever get better?


#1

I feel like I haven’t seen many, if any, success stories here. Does anyone ever get any better?

I seem to be having luck with stelara so far. I’ve tried 7 drugs so far over the past 3 years, including 3 biologics. The only ones I have had any results from so far ar imuran and stelara.

I had to stop the imuran after I got sick and was hospitalized for severe bronchitis. Once I got better and started the imuran again, I couldn’t tolerate it. Sad because it was cheap and seemed to help.

I’ve been on stelara for 17 weeks and there has been some improvement. I have less pain and swelling generally speaking. My psoriasis is a little improved as well. i still have flare ups all the time. Like weekly usually. I still have a lot of pain and swelling, but like I said, it has reduced over the past few weeks. My Rhumey said that I will see even more improvements as we continue with the treatment. That would be wonderful!

I like stelara because you only take it every 12 weeks and it doesn’t burn like enbrel or humira. It does not come in an autoinjector, though. This takes some getting used to. But still, 4 shots a year is way better than every week or so. I am not having horrible side effects other than a ton of hair loss and that is probably from all the steroids rather than the stelara.

I am hoping to see much more improvement when I see my rhumey next in 4 1/2 months. She wanted me to have 2 more shots before I see her again.

So there is hope people! Keep working at it until you find something that helps. I know it seems hopeless at times, but if I can see improvement, so can you.


#2

A lot of people will get better, and disappear from here, either forever or for a while. I think there’s a lot of success stories like mine, but I don’t tend to post updates on positive things. Rather, I’ll wind up posting questions about the bad stuff. The truth is that I’ve been on Enbrel for over 4 years, and have done pretty well on it. Not perfect, but have improved. I still struggle with joint and other health issues, but I’m an awful lot better than I would be without it. My skin has never been a significant issue.

So is that a success? It certainly should be considered a success. I’m not completely disabled, and even increased the amount of work that I did this last year, and am looking for regular part time employment. I haven’t had any surgeries other than releases for a few years. I’ve struggled with pericarditis this year, and that’s been the rough stretch. But I’m still able to focus on the needs of my family as well as the rescue cats that I work with.


#3

Hi @Kmwestmo! It’s great stelara is working somewhat and I hope over time you get even better results.

Like @Stoney, I’ve also been on Enbrel over 4 years (4 years and two months to be exact) and I’d say I have excellent results. It was a day and night difference for me shortly after I started Enbrel…at first it seemed almost like a remission. My PsA symptoms were a lot of tendonitis, painful hands, terrible pain and stiffness in my neck, back—you name it, along with moderate psoriasis. Everything felt great for the first 7 weeks on Enbrel and then my back went out. Six months after that my feet started hurting like he**.
So, I’ve had problems ever since as a result of those two things, but I still think Enbrel is working. At least 80%. I feel lucky about that.

Like Stoney, I’ve stayed active here to talk about issues that come up that affect my health, because I do think most of my health problems now are somehow related to having PsA—either damage from years of untreated PsA or illnesses related to taking a biologic.

Oh, and I also come here because I like the people! I’ve met some really nice people here, and I’m so thankful I found this place when I did!

It would be nice to hear more from people who have success stories—I’m sure there are a lot of them, most of whom only stay here while they’re not feeling well and then leave us when their meds start working.


#4

My story includes yes and no. I stabilize for long periods, one time in 6 years i thought i was in remission, the Cimzia was working so well. I stopped taking it , but alas, symptoms returned and I am back on it. One day at a time, drugs stop working, we get sick but i am so much better than when i started. I was using a wheelchair to shop etc. Now i go to water aerobics and walk miles, tomorrow?? I hope you find the right treatment for you!


#5

Great topic and I am so pleased you are seeing some improvement!

To add my story, yes, some of us really do get better, but unless you win the drug lotto (and those people probably have never even found this forum, let alone lurk around on it), it usually takes a fair bit of trial and error, and matching lifestyle changes and complementary therapies with medication.

I’ve had some very good success, and nearly 7 years after onset, am finally in remission. I’ll give a brief rundown on my journey - to give some hope with also a dose of reality.

I’ve tried 3 DMARDs and 3 biologics, as well as a couple of NSAIDs and prednisone. The DMARDs were about as effective as sugar tablets. Prednisone worked, but I had to take doses too high, and at 37 I had the bones of a 60yo.

Finally got onto Enbrel a year after onset, weaning off prednisone at the same time. Excellent for the arthritis, fatigue, and depression, which was 80% better within weeks. Unfortunately between going on the Enbrel, and off the long-term prednisone, long-dormant inflammatory bowel disease was triggered. I was a healthy weight of 59kg, and lost 5kg within 2 months (not to mention the horrible symptoms), despite deliberately eating the highest calorie food I could stomach.

Onto Humira, so desperate I paid out of pocket for the loading doses, as these were not subsidised. Improvement was much slower, but by 3 months I was back up to around 80%. I had a good run on Humira for quite a while, but hadn’t put the lifestyle changes into place to really allow my body to return to health. It stayed this way for about two years, then slowly I started getting worse. Then, I started to get very unusual symptoms not associated with the arthritis. I put them down to stress, as it was a highly stressful period (not normal day-to-day stuff). Fast forward two years, and I’m finally doing something to reduce my stress, starting on making real changes in my life, and though I am starting to cope a lot better, the Humira was even less effective. The other symptoms had become life altering, so out of desperation I switched to Cimzia. In hindsight, for those last two years on Humira, I had been having an adverse reaction to it.

The switch to Cimzia was amazing. I hadn’t realised how bad the adverse reaction I’d been having was - it was crazy-making stuff, and sleeping 14 hours a day. Now I sleep 8 hours and feel refreshed, and my PsA is almost never more than 5 minutes of stiffness in the morning or after a long drive (actually perhaps that’s just cause I’m in my 40’s :joy:), and I’m now even starting to horse ride again, not well (yet :stuck_out_tongue_winking_eye:), but I’m up to cantering and jumping will be in the next few weeks.

6 weeks after onset, my PsA was so bad that my feet and legs started to go numb and lose power, the physio said from inflammation pressing on my spinal column. I was googling wheelchairs.

It has been a rocky ride, or perhaps more accurately a roller coaster, but yes, most of us get better in one way or another. For me, I am grateful that even if I go back to the lows, I definitely have more skills now, and an altered lifestyle, that will allow me to cope with it better. I’m loving the highs though, the trick to the roller coaster is just to hang on and ride it. I almost forgot that, and very nearly didn’t make it here. Mostly, I have the wonderful people on here to thank for that :blush:


#6

All these success stories are great! Very encouraging. I am very happy that some of us are making progress. So there is hope. Keep the great news coming. I am just starting to see the light and love the feeling of hopefulness. Thank you all :grinning:


#7

Hi all,
I’ll throw my 2 cents in. I’ve been on differing meds since 1984. Enbrel was a God-send for over 10 years! One caution–try NOT to interrupt treatment for any significant amount of time because after resuming treatment the medication may not (probably will not) work again. I learned this when my insurance company and the drug company had a standoff. I was switched to another biologic which did not work for me, then a couple of others, and finally, a year later the companies had resolved their differences so Enbrel was available again. After 6 months, we realized the treatment was not working so the search for a new med began. I’m currently on Cimzia and doing okay. Has anyone else had issues with diarrhea?

Keep moving and stretching and paying heed to what your body is telling you. You (and we) are so much more than the disease. Yoga can be VERY helpful–it does not cure anything but makes living with PSA bearable.

Best of luck to you!
Robin


#8

I have been dealing with PSA for years, it seems to have an ebb and flow, sometimes it is okay other times it was BAD. Several years ago I could not even open a bottle of water, I have had periods of wrist, elbow and knee pain that moved around, exercise certainly helps. I started taking Otezla 3 months ago, at first the symptoms seemed worse, perhaps it was because I started using my joints more freely. Right now I am feeling pretty good, it supposedly takes 4 months to reach maximum effect. It has certainly helped my plaque psoriasis, I am fortunate to have only several patches, but those patches are producing far less plaque, no more soreness, and people asking what I did to my elbow. Plus I have stopped dumping cortisone cream on them. There is hope!
Bill


#9

Yes, most definitely. Living proof here, both my psoriatic arthritis and psoriasis has almost completely disappeared. I’ve been on OTEZLA since June 30th, this year and have seen and felt tremendous improvement in my condition. Hope it continues.:sunglasses::palm_tree:.


#10

Fantastic to hear Orion, thanks for dropping in and letting us know


#11

Ok I consider this kinda successful. I started on Symponi about 5-6 months ago. After first infusion it’s then 1 month and then wait 2 months for third. Well a few days after the third dose I woke up pain free. I have been taking extra strength Vicodin for 7 years since the Beast came to visit and then wham! Don’t need it. But… I also started a constant severe headache 5 days after that third dose. 10 days later I look up side effects. Yep. High blood pressure. Dr. Doesn’t know what to do, I’m his third patient on this. So now no pain, on meds for hypertension and we are going to risk a fourth infusion this Thursday. And after that I don’t know. So chronic pain versus high blood pressure. Oh and now I’m dizzy from that stupid pill. And trying to wean the last bit of Opioids out of my system.


#12

Maybe your headaches and dizziness are a symptom of weaning off the opioids?


#13

Wow, the success stories give me so much optimism! Cimzia especially, but it sounds like Symponi and Otezla work well, too! Things are looking better for all of our futures with all the new biologics coming available!
:heart_eyes:


#14

Yes one certainly does get better, thanks to cosentyx in my case, made the difference between not walking and walking again!