Head in the sand - Denying PsA

General
1

Ok, I admit it… I come on here when my pain gets bad and when it’s manageable, I take off to the other side of the world to enjoy my life, and pretend I’m ok.

I’ve been off treatment, no meds, no doctors since 2014… Yes, I’ve been in pain on and off - but most of the time I grin and bear it and get on with life. Sometimes I’m reduced to tears and promise my partner I will seek help again, and then I come good after a few days and I pretend it never happened.

I know recently my disease has gotten worse. But if I go to the rheumy and they confirm my fears they will want me back on my meds, my form of hell. I don’t think I can do that again, not until something better comes along or until my disease gets bad enough to let me qualify for the good stuff.

What’s the point of shutting down my liver and destroying the good cells as well as the bad when it doesn’t significantly improve my life.

I’m not ready for that…

I’m sure I can’t be the only one out there with their head in the sand?

2

I totally get you. I could never agree to taking pills that made me vomit so I would have less joint pain. But that’s just me and I don’t judge others for how many SEs they’re willing to put up with from meds. I was lucky enough to be able to hold out until I was eligible for Enbrel. I hope when you get to that point you will have as much good luck with a biologic as I did with Enbrel! :slight_smile:

3

Kellr84, of course we get it. I limped along for years with on-again-off-again pain. Of course, back then, I didn't know what it was. Knowing what I know now (not that much, but a lot more than I used to) I'd still want to be monitored by a rheumatologist, regardless of my own treatment preferences. In your health care system, I'd want to have failed (or proven myself unable to tolerate) two or three conventional DMARDs, so that if I ever got a really really debilitating PsA flare, I'd be on the fast(er) track to the good stuff. If your disease ever really goes south (we say that here, do Aussies say "head north"?) I wouldn't be lying there waiting for 2 or 3 rounds of three months each before they'd let my even try the best medications.

Aside from your PsA dilemma, I'm glad to see you here! I've missed you.

Seenie

4

I understand part of what you're saying, truly. I'm in pain also. I grin and bear it (I didn't realize I yelped at work the other day until I opened my eyes and saw my admin and a colleague standing in my door, both worried, both of whom said I heard you yell. Are you okay?) I'm reduced to tears--as recently as Wednesday evening. My husband cried with me because hearing me say I'm useless affected him so badly--

In 2007, I visited an orthopedist who took one look at me and told me to lose weight. I knew it was more than that and five years went by before I found my wonderful rheumatologist--five years of continuing, increased damage which now can't be undone and with which I am still dealing.

If I had begun treatment--and continued it--in 2007, I may not have had a shoulder replaced in 2013 which means I wouldn't now have lymphedema, caused, the doc says by the surgery, impingement from a pinched nerve on the left side (caused by c-spine issues which are because of the PsA) and repetitive trauma because I bang on the keyboard all day and have for 27+ years.

If I had begun treatment--and continued it--anytime between 2008 and 2012, my husband and I likely wouldn't have gone through hell and basically physically separated for over two years (while living in the same house).

If I had begun treatment--and continued it--anytime between 2009 and 2012, I wouldn't be in a wheelchair for long distances, I would be able to walk without pain in this right hip, I wouldn't have had to resort to pain meds the last two days, and I wouldn't be facing hip replacement surgery. I wouldn't be facing a major criminal trial beginning April 11 and at least a month in a hotel room, in a wheelchair, needing someone to help me dress in the morning.

Lastly, I injected methotrexate for over a year even though I NEVER got past the gi side effects. Why? Because the benefits outweighed the risks and the continuing side effects.

I get it but I also don't.

5

I think the reason I didn't opt for more meds is because my pain isn't for the most part, as severe as some of you. I have moderate PsA and psoriasis. My PsA actually came on gradually, which enabled me to get by for quite a long time feeling crappy, but not incapacitated. The only severe pain I've had is the neuropathy in my feet and the pain I had when my back went out. I'm lucky that so far my large joints (shoulders, knees, hips) seem affected very minimally. I've always told myself I'd take the meds only if the pain becomes totally unbearable (I have a high pain threshold)--and, if it ever gets that bad I'll take whatever mood-altering drugs I can get my hands on!

With that said, there IS a price to pay for not treating the disease, and I understand that. All the years of having a painful, stiff back and neuropathy in my feet are why I have problems in those places now.

6

I have had some crappy times trying new drugs but I will carry on until I find the right ones - why? I like to think I can run but I can’t hide - it’s gonna find me probably sooner rather than later and I want the best long-term health that I can get

7

Thanks for understanding grandma j - I just couldn’t justify taking them when they just made me so Ill - I couldn’t function on them



Grandma J said:

I totally get you. I could never agree to taking pills that made me vomit so I would have less joint pain. But that’s just me and I don’t judge others for how many SEs they’re willing to put up with from meds. I was lucky enough to be able to hold out until I was eligible for Enbrel. I hope when you get to that point you will have as much good luck with a biologic as I did with Enbrel! :slight_smile:

8

Sorry to hear how it’s impacted your life. It’s horrible what’s happened to you.



sixcatlawyer said:

I understand part of what you’re saying, truly. I’m in pain also. I grin and bear it (I didn’t realize I yelped at work the other day until I opened my eyes and saw my admin and a colleague standing in my door, both worried, both of whom said I heard you yell. Are you okay?) I’m reduced to tears–as recently as Wednesday evening. My husband cried with me because hearing me say I’m useless affected him so badly–

In 2007, I visited an orthopedist who took one look at me and told me to lose weight. I knew it was more than that and five years went by before I found my wonderful rheumatologist–five years of continuing, increased damage which now can’t be undone and with which I am still dealing.

If I had begun treatment–and continued it–in 2007, I may not have had a shoulder replaced in 2013 which means I wouldn’t now have lymphedema, caused, the doc says by the surgery, impingement from a pinched nerve on the left side (caused by c-spine issues which are because of the PsA) and repetitive trauma because I bang on the keyboard all day and have for 27+ years.

If I had begun treatment–and continued it–anytime between 2008 and 2012, my husband and I likely wouldn’t have gone through hell and basically physically separated for over two years (while living in the same house).

If I had begun treatment–and continued it–anytime between 2009 and 2012, I wouldn’t be in a wheelchair for long distances, I would be able to walk without pain in this right hip, I wouldn’t have had to resort to pain meds the last two days, and I wouldn’t be facing hip replacement surgery. I wouldn’t be facing a major criminal trial beginning April 11 and at least a month in a hotel room, in a wheelchair, needing someone to help me dress in the morning.

Lastly, I injected methotrexate for over a year even though I NEVER got past the gi side effects. Why? Because the benefits outweighed the risks and the continuing side effects.

I get it but I also don’t.

9

I see what you’re saying Seenie, but I honestly don’t think I could travel and do the things I’m doing while on those drugs. I found I couldn’t focus at work and I was having sick days, not from the PsA but from the side effect of the stupid pills! I’ve worked so hard for my career and I knew if I continued on my meds I would only go backwards. Great to see you again Seenie x



Seenie said:

Kellr84, of course we get it. I limped along for years with on-again-off-again pain. Of course, back then, I didn’t know what it was. Knowing what I know now (not that much, but a lot more than I used to) I’d still want to be monitored by a rheumatologist, regardless of my own treatment preferences. In your health care system, I’d want to have failed (or proven myself unable to tolerate) two or three conventional DMARDs, so that if I ever got a really really debilitating PsA flare, I’d be on the fast(er) track to the good stuff. If your disease ever really goes south (we say that here, do Aussies say “head north”?) I wouldn’t be lying there waiting for 2 or 3 rounds of three months each before they’d let my even try the best medications.

Aside from your PsA dilemma, I’m glad to see you here! I’ve missed you.

Seenie

10

Hi Kellr!

Would you indulge us and name the pills that made you sick? I'm assuming that by 'the good stuff' you mean biologics. So of course then I do my usual thing of wondering ... well, "is Kellr sure she doesn't qualify?"

Re. liver, of course I don't know specifically what you're referring to either. But I've recently had a liver scan to see if it is actually tolerating Mtx despite persistently raised ALT levels (I've been taking Mtx on & off for nearly 4 years). To my amazement (because as well as Mtx, I have been known to have the odd pint or 30 in the past) my liver is fine & dandy. Just thought I'd throw that in as grist for the mill.

As pain isn't necessarily the best indicator of disease activity it is just damn hard to know what is going on. If you're not going to budge on medication then perhaps the next best thing would be a rheumy who'd agree to monitor you .....?

11

I worked hard for my career, too. I'm a public defender. I started with my agency in 1989 as a paralegal. I did full-time death penalty work. When I started law school, I didn't quit; I worked full-time and went to law school. I went to law school through the first two executions in Kentucky. I was on the defense team for both.

I worked while I studied for the Bar--the first time. I failed that time because I took it 2.5 weeks after my dad died. I took a month off to study and passed the second time. Then I was an attorney doing full-time death penalty work.

In 2003, I burned out and moved over to criminal appeals, which is where I remain. I was a supervisor for almost ten years, those 10 years began when my husband was in Iraq and ended in 2014, when I came back from shoulder surgery. We think my husband being in Iraq for 15 months is what set off my genetic tendency toward this disease, so I was an active briefer (often with the highest caseload in the Branch) and supervisor all during those years when I wasn't medicated and the year I was struggling with MTX.

I worked--and work--damn hard for my career. I take sick days not because I inject Humira but because the disease tells me to stop. I have a HIGHLY unsympathetic supervisor, who thinks if I ate paleo, I wouldn't inject Humira or "be off so much". Even with sick days, last year, I had the LOWEST case assignment to brief filed ratio in my Branch. This year, I probably won't but I've already had two multiple day trials to brief since January 1, at the same time I've entered my appearance and am doing a ton of work for a major trial in April.

My husband and I have a wonderful life--we saw three concerts last year. In October, we finally took some days away in Gatlinburg and thoroughly enjoyed reading, watching football and the Jacuzzi in our cabin. We're thinking about Asheville in the fall. We hope Vince Gill tours for the new CD somewhere between Columbus, Ohio and Nashville because we'll be there. EVERY part of our relationship is good and meaningful. Good friends have remarked about how we're smiling so much more.

I think I better step away from this one. I'm finding I truly don't understand.

Kellr84 said:

I see what you're saying Seenie, but I honestly don't think I could travel and do the things I'm doing while on those drugs. I found I couldn't focus at work and I was having sick days, not from the PsA but from the side effect of the stupid pills! I've worked so hard for my career and I knew if I continued on my meds I would only go backwards. Great to see you again Seenie x

Seenie said:

Kellr84, of course we get it. I limped along for years with on-again-off-again pain. Of course, back then, I didn't know what it was. Knowing what I know now (not that much, but a lot more than I used to) I'd still want to be monitored by a rheumatologist, regardless of my own treatment preferences. In your health care system, I'd want to have failed (or proven myself unable to tolerate) two or three conventional DMARDs, so that if I ever got a really really debilitating PsA flare, I'd be on the fast(er) track to the good stuff. If your disease ever really goes south (we say that here, do Aussies say "head north"?) I wouldn't be lying there waiting for 2 or 3 rounds of three months each before they'd let my even try the best medications.

Aside from your PsA dilemma, I'm glad to see you here! I've missed you.

Seenie

12

Also, there are different meds in the same group as MTX. I took plaquenil for a few years, then had MTX added in. The MTX made me I’ll the whole six months I was on it. But more importantly, it didn’t work for me. So I was switched to leflunomide, and had good improvement within a month. My point is that it’s not MTX or bust.

13

I would agree with Stoney. MTX caused me intolerable nausea and sulfasalazine left me for dead with various gastro issues but leflunomide suited my very sensitive stomach nicely and had me feeling a whole lot better for a while. Bury your head in the sand if you choose (and it is your right to choose) but the consequences long term could be a whole lot more dire, and permanent, than having to deal with a few side effects that are often transient anyway.

14

I think your voicing the fears that most of us have, whether we medicate or not. There's not really a 'win-win' situation here, is there, just a 'least worst'. I was only diagnosed with PsA two days ago, and inflammatory arthritis 3 months ago - but I have been trying to get doctors to listen to me for 4 or 5 years, and I have a horrible, horrible feeling I have had this disease for decades. In my situation, I will be trying whatever drugs I can persuade the doctors to give me, because as well as the pain, I already have deformed hands and feet, and had my hip replaced 2 years ago, and I am more afraid of further damage than I am of the drugs. I am doing all the self-care I can manage: eating a mostly plant-based diet, with no meat and at least 7-8 portions of fruit/veg each day; vigorous cardio exercise in water for 2.5 hours per week; sleeping and resting as much as my body will let me; cutting out refined sugar; losing weight... And it's not enough. So, drugs it is. When I finally get them, if they make me ill, I might feel differently... The one thing I know for sure is that we are almost always better off following our instincts than not, so if your instincts tell you not to take the drugs, don't - unless or until they do. Good luck!

15

Sixcatlawyer, its okay if we don't understand where others are coming from. We're not always going to agree on how to approach our PsA monster! I think it's great we have people here with various opinions who can offer support and understanding and help newbies and all of us understand the importance of treating PsA. But we all come up with our different approach. Most of us know if and when we need to accept taking a medication of which we've had doubts. Take me, for example. I could not bring myself to taking MTX because my mom had a bad experience with it. I refused Sulfasalazine because I feared its possible SEs. I so feared biologics, but finally realized I had to do something and went on Enbrel after a LOT of encouragement from people here. It wasn't an easy decision at all, even though I felt like crap. And, to be honest, I still wonder and worry a little about whether Enbrel, as much as it's helping me, could be harming me as well.....

16

I think your voicing the fears that most of us have, whether we medicate or not. There's not really a 'win-win' situation here, is there, just a 'least worst'. I was only diagnosed with PsA two days ago, and inflammatory arthritis 3 months ago - but I have been trying to get doctors to listen to me for 4 or 5 years, and I have a horrible, horrible feeling I have had this disease for decades. In my situation, I will be trying whatever drugs I can persuade the doctors to give me, because as well as the pain, I already have deformed hands and feet, and had my hip replaced 2 years ago, and I am more afraid of further damage than I am of the drugs. I am doing all the self-care I can manage: eating a mostly plant-based diet, with no meat and at least 7-8 portions of fruit/veg each day; vigorous cardio exercise in water for 2.5 hours per week; sleeping and resting as much as my body will let me; cutting out refined sugar; losing weight... And it's not enough. So, drugs it is. When I finally get them, if they make me ill, I might feel differently... The one thing I know for sure is that we are almost always better off following our instincts than not, so if your instincts tell you not to take the drugs, don't - unless or until they do. Good luck!

17

I’m not saying I’m right or doing the right thing at all

It’s just a phase I’m going through and feel too overwhelmed by it at the moment to deal with it

I’m probably doing the wrong thing and I will look back and realise I was an idiot. I was in hospital at the end of last year after suffering multiple seizures and I felt like I was going to die. It was so scary, it made me realise life is short and I think it was easier to just run from it all. I’m sure all of you have had at least one day when you feel like going off your meds and not going to your doctors appointment. Truth is, I have no idea what I’m doing and I feel lost and I’m sure you’re all right in what you’re saying. It’s hard while working as a locum travelling around the place and not having a regular doctor you trust to keep you in check.

I guess I’m reaching out because I know now I need help and to get onto treatment but I’m completely stumped where to start. Should I get treatment in the UK or Australia? I might even be off to a Canada next… If anyone has someone they can recommend I’m all ears :slight_smile: and thank you all for your comments xox I really appreciate your support

18

Kellr, you are smart and thoughtful, and always have been. Absolutely, I can see why you say that you cannot live the life you want to live while you are on "those" drugs.** You mean methotrexate and the other DMARDs, right? Have you tried Leflunomide? The other two (sulfasalazine and hydroxychloroquine) have a better rep with most people as far as nausea and headache go. Here is the thing: unless you are covered by a good private insurance plan (like some people have in the US) you are probably not going to be able to access the biologics in Australia, Canada or the UK without having failed two or three DMARDs first. And ironically, the biologics are the meds with the fewest side effects, and the best performance record as far as damage prevention goes.

So what does "failed" usually mean? It means that you haven't improved on the drug, OR that taking it was intolerable for you. So you say that mtx (?) made you miserably ill? Did you try the injectable? If so, one FAILED! Try one other, and if it doesn't work or it makes you ill, two failed. If at that point, your PsA isn't severe enough to warrant a biologic, you are in a strong position to get a biologic if you have two or three failures on your chart and your disease goes haywire.

That is what I would do. Just strategy, really. The other thing that you have to remember is that there are tough old birds amongst us here who have gone for years, nay decades, just toughing it out (either by ignorance, choice or because docs didn't listen). Some of us, me and Flow for example, have a high tolerance for pain. We are BAD examples, with our TJRs and our broken feet. Or maybe good examples of what happens to people who tough it out, whether by choice or by accident.

Oh! I forgot the "nugget" from my last visit to the rheumatologist. She had a resident in with her, so I was fortunate to be a fly on her classroom wall. "Psoriatics" she said to the resident, "Often have less pain than you would expect them to have given the severity of their disease. That's how damage happens with them." I thought that was a great takeaway.

You came here for support. I hope, even though there are some negative themes running through the discussion, that you know that we are being supportive and caring.

I'm curious, are you working in Australia now, or are you still in the UK?

** I know. It's hard when you feel rotten. But it's also hard when your feet are broken or you need a joint replaced.
19

I recall now that you spend a lot of time in the UK. If you are entitled to full NHS care, and if you might be prepared to try biologics then as I understand it access can be a fair bit easier over here than in Australia. Meeting the criteria isn't always as straightforward as it looks on paper, but those criteria are essentially that you have failed 2 or more DMARDs and have 3 or more swollen / tender joints.

There are 2 centres of excellence for PsA in the UK, one in Leeds and one in Bath. I would definitely recommend my rheumy in the West Midlands too and I'm sure others would have their own recommendations.

Just reading this last response of yours (plus your blog) makes me realise that your relationship with medication is genuinely complex and I'm just glad that you've chosen to voice how you feel and to reach out for others' ideas too.

Kellr84 said:

I'm not saying I'm right or doing the right thing at all
It's just a phase I'm going through and feel too overwhelmed by it at the moment to deal with it
I'm probably doing the wrong thing and I will look back and realise I was an idiot. I was in hospital at the end of last year after suffering multiple seizures and I felt like I was going to die. It was so scary, it made me realise life is short and I think it was easier to just run from it all. I'm sure all of you have had at least one day when you feel like going off your meds and not going to your doctors appointment. Truth is, I have no idea what I'm doing and I feel lost and I'm sure you're all right in what you're saying. It's hard while working as a locum travelling around the place and not having a regular doctor you trust to keep you in check.
I guess I'm reaching out because I know now I need help and to get onto treatment but I'm completely stumped where to start. Should I get treatment in the UK or Australia? I might even be off to a Canada next.. If anyone has someone they can recommend I'm all ears :) and thank you all for your comments xox I really appreciate your support
20
I think you're voicing fears that many of us have Kellr, whether we medicate or not. There's not really a 'win-win' situation when you get this ill, is there, just a 'least worst'. I was only diagnosed with PsA 3 days ago, and inflammatory arthritis 3 months ago - but I have been trying to get doctors to listen to me for 4 or 5 years, and I have a horrible, horrible feeling I have had this disease for decades. In my situation, I will be trying whatever drugs I can persuade the doctors to give me, because as well as the pain and the other symptoms, I already have deformed hands and feet, and had my hip replaced 2 years ago, and I am more afraid of further damage than I am of the drugs. I am doing all the self-care I can manage: eating a mostly plant-based diet, with no meat and at least 7-8 portions of fruit/veg each day; vigorous cardio exercise in water for 2.5 hours per week; sleeping and resting as much as my body will let me; cutting out refined sugar; losing weight... And it's not enough. So, drugs it is. When I finally get them, if they make me ill, I might feel differently...

The one thing I know for sure is that we are all usually better off following our instincts than not, so if your instincts tell you not to take the drugs, don't - unless or until they do. Good luck!