Do I need to adjust my expectations?

General
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I went in for my check up week before last and I’ve been on Enbrel for 6 months now. I’ve seen little to no improvements, so my rhuemy is changing me to Humira and staying with the Duexis 2-3 times per day. We discussed that over the last 2 months, my pain and stiffness have been as bad as ever, with my hands, feet and lower back already hurting when I wake up in the morning and “sleeping” for 8 hours gives me no feeling of rest when I wake up in the mornings. I asked him if I had too high of expectations that the pain and stiffness would “go away” if we found the right treatment and he said that 25-50% improvement is great and 75% would be something to celebrate. I like my dr, but needless to say, hearing this for the first time 2 years in didn’t do much for my current mental state.

After 2 years of taking meds, I guess I thought that I would be at a better place, but honestly I feel more lost, scared, frustrated, exhausted and angry today than the day i was given the diagnosis AND I don’t really feel any better physically. Lately it’s getting harder and harder just to get through a day. It’s harder to focus on things, get anything done and I constanly forget things. I’m mentally and physically exhausted and I’m losing hope that I will find a treatment that will actually change the way I feel. Is this the normal course??

Sorry if I seem all over the place, I just don’t know how to collect my thoughts, or how I’m supposed to feel? I just want to drive to work one day that I don’t feel like I need to flip a coin to decide to to pull over and sleep or cry during my 2 hour commute :o(

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The others probably know much better what kind of improvement is to be expected from the right drug… but I feel like 75% improvement is the lowest of what they expect from the right drug?..

I get that thinking your going to be back to 100% might be a bit much… but being able to function normally seems to be the goal… maybe that’s what he sees as the last 25%?

I feel like it’s more on a exponential scale… as to how well you can function… (this makes so much sense in my head but it’s so hard to explain how I mean it… lol sorry!)

Rescaling%20the%20estimation%20base

From 1-100 is how much trouble you have functioning and from 1-10 is how much pain you have… If you go down 50% on the 1-10 axis you go down 85% on the other axis…

Of course it’s not as black and white or exactly like that… But I do feel like it depends on which you take as your “measuring” tape to see how well you improve…

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I’m sorry it’s such a struggle. I’d be depressed too.

There is hope. Since starting Humira I wouldn’t think in terms of a ‘percentage improvement’ because it doesn’t seem relevant. I’m just one happy customer. You’ll know when you’ve ‘got there’ I think, and clearly you’re not there yet.

Can you take a long hard look at your lifestyle in case there are things you yourself can do to manage the disease that you’re not doing already?

You know that Humira might make a huge difference, it may be the one that works for you. But hanging on to the hope gets really tough when we’re talking years of suffering with little relief. But you must know from reading posts here that a real change is indeed possible.

Do cry … I would. I’m a tactical cry-er - ‘time to let it all out’ or ‘time for a stiff upper lip’. I try to work out what I need emotionally, physically, for dinner … everything and anything that’ll help. ‘Time to post and vent to people who get it’ also applies. Sock it to us whenever you need to.

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Thanks for your kind words, after re-reading my post, I guess I did need a good vent session! I’m working on being more strict with my diet and trying to start a regular exercise program. I’ve just been so tired it’s hard to muster up the strength to do it. My Vit D levels dropped again (16ng/ml) even though I am taking supplements. My dr raised me to 5000IU a day, so maybe that is contributing to my fatigue.

I guess I am just now finally coming to terms with the fact that this is not a take a pill and it goes away thing or I can just push through the pain/fatigue, and I am going to have to make alot more adjustments than I have so far!

Thanks again for the support and understanding, it helps so much!!!

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I’m still pondering the percentages. I am sure they can be applied, especially to the things that are simply counted i.e. swollen / tender joints. But there’s all the other stuff such as feeling half dead. I am not sure whether feeling only 10% dead would be a genuine improvement. Anyway, I used to feel really, really lousy. And now I don’t. I used to get horrible fatigue, and now I don’t, not usually. You just can’t slap a figure on those things. I’m blown away by the change, it’s great!

Some adjustments might repay you in spades and managing the condition through exercise and good diet etc. may possibly boost the effect of the drugs. I hope Humira works really, really well for you.

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How you are supposed to feel, Rob, is exactly the way you feel. This is where you are, and you have to deal with what you’ve got. There’s no manual that lays all this out. (If only there were!)

Some of us simply have a disease “nut” that’s hard to crack, and it sounds like you are one of those. Me too. In my case, it took two years from the time my joint damage was discovered (I had been very poorly for years at that point) to get a solid diagnosis, and then to find a treatment which started to work. It’s awful, I know. A lot of us here know.

A couple of things: I’m totally with Sybil on the percentages thing. Who knows what 20% less awful means? What’s important is what you are able to do with whatever improvement you are lucky enough to get. And it sounds like anything – even a small improvement in mood or in sleep – could make a big difference to you. In my own case, I know that the drug that worked for me, finally, after a long trial period didn’t solve my problems. I have no idea what percentage improvement it was, but I can tell you it was not 75, let alone 100! But it gave me enough of an improvement that it essentially enabled me to eat a little better, exercise a little more, and feel a bit better rested in the morning. Nothing dramatic, but it all adds up. Those small gains, over time, build on, and enhance, each other and that’s where the Cynthia’s exponential effect comes in. (I think, hope I’m not misinterpreting you, C!)

Your resolve to eat better and exercise more is admirable and what you should be doing, no question. But be honest, is it going to happen while you are in pain, sleeping badly and you’re battling fatigue that very few (besides us here) can “get”? Hmmmmm… Depressing thought, isn’t it? Psoriatic Arthritis IS depressing, and not only in the way that you might think. Do look into that connection between your disease and depression: I sometimes refer to PsA as a disease that “wrecks your joints and messes with your mind”.

Although the ideal solution is probably to wrestle your PsA into submission, it does sound to me like you could use some help with your depression sooner than that might happen. Have you spoken to your PCP about treating your depression? After years of my primary messing about with this anti-depressant and that, I finally bit the bullet and asked for a referral to a psychiatrist. One appointment, one change of medication and one dosage tweak, and I was better than I had been for decades. And it’s amazing what a bit less anxiety, a bit better sleep, and bit more focus can do for a person’s well-being! Tackling your depression is something that you can do immediately, and from which you could quite possibly see positive effects quite soon. There are even anti-depressants out there that help with pain. I’d suggest, though, that treating depression that’s all tangled up with your disease is a job for an expert, not for your PCP.

Rob, hang in there. And keep us in the loop: we hope that you’ll start seeing some small but significant improvements soon.

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I echo this wholeheartedly. Along side the treatment for PSA I take meds for my head and see a psychotherapist. It so helps me. Seriously.

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I second Seenie and Poo. The effective medication made a huge difference to put me in a place where I could climb out of the hole, but without all these others incremental changes, I did not have the spiral staircase leading upwards.

Right now, I’m rather close to falling back to the bottom of the hole disease-wise (though not all PsA), but I feel very fortunate that mentally, I’m not anywhere near the bottom of that hole, because the spiral staircase is still there - and every time I get a breather, I can still take a step upwards.

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Don’t give up Rob, I have been on most of the biologics. Just switched to Orencia and am starting to notice a difference. It just takes the right one, to make things better.

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Ditto (except in my case it’s Enbrel), and I hope, Rob, that someday you can say that, too, about whatever biologic works for you! I can honestly put a percentage on my improvement–25% wouldn’t have made me happy–50%, well, that would be noticeable, but the 80% I feel I can say is pretty accurate and I’m well satisfied with that. It’s unfortunate this isn’t the outcome for everyone, and I sure wish it was! It doesn’t seem fair, and it also doesn’t seem fair that biologics that are working well can suddenly lose their effectiveness and people like me and Sybil could be back to square one. (Never knowing when or if that day will come causes me some anxiety.)
I like the chart, Cynthia–that does make sense…we can all function somewhat ok when the pain is at the 5 or below level, but getting closer to the 10 (even 7,8 or 9) it becomes extremely difficult, if not impossible, to cope.
There are some great suggestions on treating your depression, getting better sleep, and working on your diet and exercising as you suggested–these things are always helpful to some degree. I’ve noticed that sweets are a culprit that can cause me extra pain and inflammation–and that is also in the form of carbohydrates.
Take care, Rob, and don’t give up. There are better days ahead.

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Sorry to hear what you have been going through.
My experience has been that both methotrexate and lefluonomide (which I’m currently on) have been effective in getting joint swelling under control. I really only have the odd obviously swollen joint now (mainly one finger for the last few weeks), however I still have a lot of pain, fatigue, and stiffness which leaves me feeling like a zombie. I’ve been under the care of the consultant for 3 years now but I feel they are mostly interested in swelling in my hands and always give me the impression that the drugs should be making me ‘normal’. Probably stupidly I’d not seen a GP for some time and when I pressed him last time he said that the drugs are there to stop joint damage but I still have to realise I have a chronic disease and will feel like this. In one sense it was a relief to hear this as I had felt like I was making it up but equally it has made me feel like my life is over (sorry for the melodrama!)

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Thank you all for the words of encouragement, they have certainly helped me get through this week! My first round of Humira will be waiting for me on the front proch went I get home, so fingers crossed…

I find all the comments on aniety/depression very interesting. I was diagnosed with generalized anxiety disorder (GAD, what’s up with all the 3 letter issues lol) about 12 years ago and I went through a couple of years battling debilitating panic attacks. I was only on meds about 2 years as I had a very stressful project at work that finally finished up. Unfortunately, I don’t remember a lot about those 2 years as the meds turned me into a zombie, so I’m in no hurry to get back on that train unless completely necessary.

The interesting part was during this time was when I starting having psoriasis outbreaks. I was fortunate that it was isolated to my ears and scalp and fairly mild, but unlucky in that my gp misdiagnosed it as eczema and it went untreated until recently when I was diagnosed with PsA. That has been the one positive as the meds have mostly cleared up my minor skin issues.

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no worries Pilgrimchris, I think I had several heaping servings of melodrama in my original post!!!

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You’re in the right place for support! I’m fairly new and have found the humour and positivity in this group to be fantastic. Last June I was initially given a diagnosis of RA, and told to join forums while I waited to see a Consultant. They depressed me and frightened me so much and I felt like screaming at some of the members for their extreme negativity. Then I was diagnosed by a Consultant with PsA not RA, and eventually found my way to this group. It’s a lifeline and you get REAL support from real fellow sufferers, in a world where I often thought my future looked bleak. Take heart and have faith that with the right meds you will get back your joie de vivre! :sparkling_heart:

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Hi @Rob3
You are not alone!! Next month will mark two years since being diagnosed and I am no closer than getting this disease controlled than when it was first discovered. I’ve done the steroid/MXT, Sulfasalizine, Humira, Symponi, Enbrel, now just started Cosyntex (300mg) and MXT (15mg) two weeks ago. Also two weeks ago I started antidepressant meds. Wellbutrin extended release is what I am on and while I’m waiting for the benefit to begin (usually takes about a month), I can tolerate it much better than 10-15 years ago when I first tried it. Im hopeful it will help. Maybe the drug for anxiety you used to take has been replaced by a much better- tolerated one. It would be worth it if it does I think!
Wanting to eat right and exercise as you should is a great goal. Hats off to all who are able to accomplish this important health benefit. But while I’m trying to get through one day at a time, those things can just “kiss my grits.” I refuse to feel guilty that I’m not up to exercising regularly. Some days I am darn proud that I was able to change the bed sheets and get the laundry folded. But I strongly believe that once we find our magic potion we will feel better-- while it may not be 100%, it will be better than now and that’s a good thing!!
We are here for each other. No filter needed. Hang in there, friend!

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I’ve been depressive all my life, and on generally effective medication for twenty years. My PSA was diagnosed after nearly two years of feeling like an 85 year old in a 59 year old body; surgeries, a serious dvt, developing hand and feet deformities etc. etc. My initial thrill of the diagnosis (I wasn’t just a whinging hysteric!) was soon swamped with nearly a year of the “gap”, before I started feeling better. This site was a godsend, although as mentioned above, you should be cautious not to go down the rabbit hole with those who have not yet found a viable treatment plan. Those who helped me most were those -and they are many- who had gone through seriously tough times, and emerged with a quality of life which is “better”.
I am blessed with a GP and a rheumy who listen. I am on a handful of daily meds for both the depression and the PSA, which have made my “better” pretty darn good. (Said meds includes a cocktail of anti-depressants which also target pain.)
Outcomes based on comparisons have always seemed misleading to me, as my life has been very much an individual project! I took a while to understand and accept that a chronic disease doesn’t have a finite end, like a cold or the flu. I’ve accepted a lot of the changes, especially the need for moderation, rest and exercise, but frustration unexpectedly shows up sometimes, when I can’t complete something that was easily accomplished but now takes time and modification.
Everyone here understands how miserable these early stages are. That you are surviving while working with a two hour commute seems nothing short of heroic to me! Please vent whenever it will help! Many fingers are crossed that your combination therapies will soon be discovered.

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Whoa, buddy, I don’t blame you for not wanting to get on the train to Zombieville. But it definitely doesn’t have to be like that, and if it were like that, I’d quit too. But please read on.

Like Susan2, I’m on a cocktail of anti-depressants, one of which is Cymbalta (which is, as a matter of fact, officially indicated for osteoarthritis pain, believe it or not) and these medications have made all the difference to me. And, quite the opposite of zombifying me, they have helped with pain control, mood and motivation. Really, Rob, worth a try. Just a little less pain, a bit more energy, improved mental focus … all adds up to “I can cope”.

Hey, don’t apologize for the melodrama. Sometimes that’s what it takes to put things in focus and make tough decisions.

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@Rob3, I’m on pregablin - no zombiefying and certainly has helped me. That and seeing a psychotherapist.

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I went back and read up on the meds I was taking back then and alot of bad things has been written about one of them since then (Klonopin). Wish I had known that back then, as I probably would have asked for something different, that is some really bad stuff!

Based on that and some of your experiences, I’ll keep an open mind in that area.

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Klonopin!?!!??? No wonder you are a bit negative about being zombified! Cymbalta is the one I take, because it works for pain as well as my depression.
Glad you’re keeping an open mind.