Conversation questionnaire

Hey its time to get some discussion going here! I have no plans for further use of any information that you share but think it would be good for the community to see the diversity of treatment and effectiveness. Feel free to give brief answers or elaborate as you see it being helpful to others. I have 5 questions to answer:

  1. Is your current mobility better or worse than 2 years ago?
  2. Is your pain being managed better today than it was 2 years ago and why or why not?
  3. What percentage mark would you give your current PsA medication (biologics etc) from 20% or less effective to 80% or higher effectiveness. Please include your current meds if comfortable doing so.
  4. Please rate your current rheumatologist with 1 being terrible to 5 being fantastic.
  5. Please rate your sense of optimism regarding your living with Psoriatic Arthritis over the next 5 years. In the dumps with little hope as 1. and things are looking really good as 5.

Thanks for considering and taking a few minutes to share where things are at. It’s great how much we can learn from each other!

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  1. About the same which is pretty excellent.
  2. Pain levels are pretty good but I do take anti-inflammatories and painkillers. I’ve tried to lessen them but this current regime keeps me at my best.
  3. I’m on Cosentyx for nearly three years and I would say it’s about 90% just fabulous.
  4. I see a very well known and well regarded PsA specialist rheumy who runs a centre of excellence for PsA in the UK so she gets a 5 plus 5 gold stars in addition. She is exceptionally lovely and I feel so safe in her care.
  5. This is a $6 million dollar question really as nothing stays the same with PsA. We can grow antibodies to the biologics and things can change too. For instance I’ve developed Crohn’s too which could possibly mean a meds change etc etc. Five years is too long a period. For this next year I would say 5 but I literally couldn’t say further than that.
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Thanks @Poo_therapy. Your story is quite encouraging for those who are new to PsA and as rattled as many of us were when that first diagnosis was made. With time and perseverance, there are meds that can be life changing! Let me know if your rheumy is visiting Canada and needs a “destination patient”.

  • Is your current mobility better or worse than 2 years ago?
    Somewhat better - current biologic helping but winter is coming!

  • Is your pain being managed better today than it was 2 years ago and why or why not?
    I’d give the same answer as the first question - for the most part yes.

  • What percentage mark would you give your current PsA medication (biologics etc) from 20% or less effective to 80% or higher effectiveness. Please include your current meds if comfortable doing so.
    On Cosentyx - pain, fatigue, and stiffness have all improved but still . I’m still living all of these but I am able to do more (pretty active). Negatives would be some digestive issues and fatigue post injection. Moving from every four weeks to three. I’d give it an 85% simply because I can do more physically.

  • Please rate your current rheumatologist with 1 being terrible to 5 being fantastic.
    I’d give her a 4 - she’s always in a rush (very busy) and gives me what I need. I spend more time with the nurse practitioner. No one asks about anything “extra” - mental health, how you’re doing in your life, comorbidities, etc. It’s very patient directed (ie. I have to ask and know to ask). Once I was diagnosed it’s been all about what drug and pain levels. FWIW, it took 5 rheumatologists and this is the best one.

  • Please rate your sense of optimism regarding your living with Psoriatic Arthritis over the next 5 years. In the dumps with little hope as 1. and things are looking really good as 5.
    Firmly in the middle ! I’ve been on sulfasalazine, methotrexate, plaquenil, otezla, humira, and now Cosentyx. It took 10 years to get diagnosed after a life time of intermittent issues that are way worse. I have some damage, I wear wrist braces a lot and finger braces to prevent permanent curvature. How long with the Cosentyx keep helping ? My life is focused on this disease and some comorbidities of it. I try to get good sleep, eat healthy, move daily, rest, etc. That alone is exhausting ! The disease is progressive.

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Thanks for the detailed response. There are times in which I feel so good that I almost forget about PsA but it always comes back to wallop me when not looking. Your last line, “The disease is progressive”, is a good reality check. I don’t know of any 80-90 year olds with PsA but that could be for reasons like, not many in that upper age bracket are on the internet. Those of us in the 50-70 year old range may be the first that provide a long history as to how the disease progresses.

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My mom is nearly 80 years old, but. . . . She was diagnosed late, and I suspect that it really didn’t present until after menopause. Because of the timing, the hand destruction was assumed to be osteoarthritis until it was too late. So she’s the right age, but has been living with it for less than 25 years, and was only diagnosed about 5 years ago.

I was diagnosed at 35 years old, but can trace it back to at least 19 years old. So definitely will have a different course than she did.

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  1. Is your current mobility better or worse than 2 years ago? That’s a bit of a challenge. Two years ago I was recovering from surgery to repair one of multiple fractures I had in my feet. Big picture, my mobility is similar, but it’s getting harder and harder to get started moving. Much more pain and stiffness.
  2. Is your pain being managed better today than it was 2 years ago and why or why not? Pain being managed. . . That’s also a tough one. In terms of pain, my doctor uses it as a way to help determine if my treatment program is working. Right now, I would argue that my biologic is on it’s way out, so my pain levels aren’t awful but they aren’t fabulous either.
  3. What percentage mark would you give your current PsA medication (biologics etc) from 20% or less effective to 80% or higher effectiveness. Please include your current meds if comfortable doing so. Currently I’m on methotrexate and Humira. I would give the combo about 60% effective. Decent enough to keep me on them, but not great.
  4. Please rate your current rheumatologist with 1 being terrible to 5 being fantastic. I would give her a 4. That’s another change, as my previous rheumatologist retired just over two years ago. I feel that she’s doing a very solid job.
  5. Please rate your sense of optimism regarding your living with Psoriatic Arthritis over the next 5 years. In the dumps with little hope as 1. and things are looking really good as 5. Definitely not down in the dumps, but not overly rosy so let’s call it a 3.5
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60% is better than nothing but one would hope that the meds of today would do a better job. Hopefully you won’t have to experiment too long when a change of meds comes your way. The juggling act is no fun and as you know, the in between stage can be rough. Other than Rinvoq, I wonder if there are any new meds around the corner?

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  1. Is your current mobility better or worse than 2 years ago?

I would say a little bit worse but I am now entering the osteoarthritis age group in addition to my psoriatic arthritis.

  1. Is your pain being managed better today than it was 2 years ago and why or why not?

About the same. Medication change due to insurance. Think the other medication worked better/longer between infusions. About two weeks prior to infusion I can feel the difference.

  1. What percentage mark would you give your current PsA medication (biologics etc) from 20% or less effective to 80% or higher effectiveness. Please include your current meds if comfortable doing so.

85% compared to my previous medication which I would have rated at 95+%. Insurance sucks.

  1. Please rate your current rheumatologist with 1 being terrible to 5 being fantastic.

My rheumatologist is a 5++++

  1. Please rate your sense of optimism regarding your living with Psoriatic Arthritis over the next 5 years. In the dumps with little hope as 1. and things are looking really good as 5.

4.5

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  1. Is your current mobility better or worse than 2 years ago?

Better

  1. Is your pain being managed better today than it was 2 years ago and why or why not?

No, 2 years ago I was on oral methotrexate regularly

  1. What percentage mark would you give your current PsA medication (biologics etc) from 20% or less effective to 80% or higher effectiveness.

I’m not currently on any medications

  1. Please include your current meds if comfortable doing so.

I eat healthily with two cheat days a month for pizza and wine;)

  1. Please rate your current rheumatologist with 1 being terrible to 5 being fantastic.

I don’t currently have a rheumatologist

  1. Please rate your sense of optimism regarding your living with Psoriatic Arthritis over the next 5 years. In the dumps with little hope as 1. and things are looking really good as 5.

5

I will remain optimistic forever!

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I really appreciate this line of inquiry. I remember trying to find this info on this forum when I first joined, so I think it will be nice for future members to see all this information in one place.

  1. Is your current mobility better or worse than 2 years ago?
    For me, it’s better. I was diagnosed 10 years ago and had to give up running and cycling. Eventually, I had to give up hiking and long distance walking too (I was on methotrexate and sulfasalazine at the time). I switched over to a biologic (Enbrel) 4 or 5 years ago, and my pain has improved yearly since (though sometimes I think I just might be better at dealing with it). I have been back to hiking and when I can’t, I walk 4-5 miles/day in my neighborhood hills. (Owning a dog helps on the days that I don’t feel like going). Note that I was quite resistant (scared!) to start biologics at the time. I’m glad that success stories on this forum helped me muster the courage.

  2. Is your pain being managed better today than it was 2 years ago and why or why not?
    Yes, as per above. In addition to the Enbrel, I use doclofenac (a NSAID) 50mg three times a day. I am almost pain free on it, but am quickly reminded about the arthritis when I forget a dose.

  3. What percentage mark would you give your current PsA medication (biologics etc) from 20% or less effective to 80% or higher effectiveness.
    I would say I can do almost everything I want, so I’d go with 90% effective.

  4. Please rate your current rheumatologist with 1 being terrible to 5 being fantastic.
    My current doctor took over for my former rheumatologist and seems proficient, so I’d give her a 5.

  5. Please rate your sense of optimism regarding your living with Psoriatic Arthritis over the next 5 years.
    Considering how ten years ago I assumed I’d be in wheelchair by now, I’d say I’m pretty optimistic I’ll still be mobile in 5 years. Things can change overnight, but so-far, so-good!

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Thanks for your reply, wow, that seems like that is a lot of diclofenac but it obviously is working for you. I’ve been using Celebrex on an as needed basis and it changes my day from sore and blah to much better pain management. But, I am also scared of side effects so I choose discomfort over comfort medication. I’ve only used diclofenac (Voltaren extra strength) as a topical cream on specific joints and it is effective. Celebrex is long lasting and if I take 200mg in the morning it is very effective for close to 24 hours.

  • Is your current mobility better or worse than 2 years ago?

Definitely better. I started on Tremfya in April and after a bunch of massive failures over the past few years, to the point where I was regularly exceeding my pain tolerance, I’m finally on something that’s working (for now).

  • Is your pain being managed better today than it was 2 years ago and why or why not?

Yup - mostly bc the biologic is more effective I think. I just switched from naproxen 500mg 2x/daily to Diclofenac 75mg 2x/daily with little change. I actually had to pause it for five days to get scopes and hardy experienced an uptick in pain which was amazing. (Though now am having some breakthrough but it’s still well below my tolerance threshold).

  • What percentage mark would you give your current PsA medication (biologics etc) from 20% or less effective to 80% or higher effectiveness. Please include your current meds if comfortable doing so.

About 85% I think. Still having some inflammation in my spine and fingers and toes, and a new spot of psoriasis on my leg but miles better than where I was at the beginning of the year.

  • Please rate your current rheumatologist with 1 being terrible to 5 being fantastic.

5 - my Rheum is one of the best in the city and I count myself lucky to have gotten in with her when I did as her roster is constantly too full for new patients.

  • Please rate your sense of optimism regarding your living with Psoriatic Arthritis over the next 5 years. In the dumps with little hope as 1. and things are looking really good as 5.

2? I’m doing pretty good now but have never experienced relief on a med for longer than a year because I seem to be really good at making antibodies to my biologics after about 9 months. And my only remaining option is Rinvoq (literally have been on everything else). So I’m worried but trying to take advantage of the current situation as much as I can by getting back into exercising and I even started lifting some puny weights (so a short walk, followed by some dumbbells every weekday at lunch, lol). At least maybe I can go into the next slump in slightly better shape than last time :crossed_fingers:

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  1. Better
  2. Yes. the JAK inhibitor Rinvoq and buprenorphine patches
    3.100% Ive been on Rinvoq for about 10 months and I keep getting better
  3. 4
  4. 5
    At 76 years of age I’m better than i was at 50. The JAK inhibitor is better than the 5 biologicals I have been on and I understand the body doesn’t produce antibodies against it so its efficacy should’nt wane.
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Great to hear from you again @Allan and wonderful that the JAKi is working so well - after such a long road how unexpected to find something so effective!

Thanks for the good info that you shared. My rheumy put me on Rinvoq as soon as he determined that Humira wasn’t helping enough so I don’t have nearly the list of biologics that you have had. I can’t say that I have had any nasty side effects from Rinvoq but it hasn’t brought “remission”… whatever that is. Exercise and mobility is pretty good but I have to really be disciplined to quit before I feel any sort of soreness. Even then, a longer walk, standing too long or anything strenuous like cutting, splitting and stacking firewood results in that pain that doesn’t come while being active but hits like a brick when at rest. It is frustrating cuz’ in the moment of activity, I feel good and strong. But even an hour after the exercise, my shoulders, elbows hands all ache like crazy! It comes on like dark cloud descending and leaves almost as fast…sometimes in a few hours or lasting until the next day. Without exercise, the Rinvoq seems about 75% effective and I supplement with Celebrex as needed for a better day. Oh yea…Rinvoq is about $60/day per pill in Canada but Abviecare is covering it for me right now. I think they want it out there to prove its success and hit a home run on the market so right now, “free samples” seem the norm.

I know this isn’t a popular choice, but I’ve had good success with the functional medicine approach over the past six months since my diagnosis. Had a myriad of symptoms -mostly full spinal pain and stiffness, left elbow pain and hamstring inflammation and shoulder pain for many years. It’s taken some time, but most of the pain and hormonal symptoms are gone with supplements, diet modification, sleep and mild to moderate exercise. I know there are are some good drugs out there and I haven’t discounted them. For me this was an approach I am more comfortable with at this time. Anyway, just wanted to share with anyone this might help. I never knew functional medicine existed prior to this diagnosis and I’ve been frustrated by how long it takes, but finally seems to be paying off.

Welcome here and thank-you for your input! Since all of us are on this journey in similar but unique ways, it is unlikely that any of us will just sit “forever” with one mode of treatment so it is good to hear of your success. Please keep in touch and update as you go. We are glad you joined us!

Mobility is better because I’m responding to treatment better.
2. Pain is up and down and very reactive to weather here in Ohio. I take pain meds.
3. 80% Cosyntex and sometimes herbs from chiropractor.
4. 5 I go to Ohio State University.
5. I’m not optimistic. I have developed severe anemia which is probably chronic and rheumatologist says it’s common when you have a autoimmune disease. Plus developed kidney stones this year. And couple other issues. I feel myself slowly sliding downhill.

Thanks for the response @Bern. It sounds like you are battling from all sides and that can be tough! Twice I have had kidney stones and both times passed them on my own but oh man, I can relate to the pain! So how does the weather affect you? Is it when the barometric pressure changes or temperature or? I generally feel a low pressure system coming in and heavy cloud cover, rain etc. But I know many who react to any change…up or down. Optimism is a tough one and can be a matter of mind games which I don’t do well with. I prefer realism but sometimes the reality of our situation isn’t optimistic. Hope this makes sense…speculation on things we don’t and can’t know easily feeds pessimism so I try to be realistic living in the moment while looking for those glimmers of hope! Take care, will pray for you.