How Much Better does it Get?

General
1

Hi. This may be a strange question. But there are so many people here on so many different medications and so many different stages of the disease. Last October I had got to the stage where I could barely walk and struggled to get out of a chair. Since I started hydroxychloroquine (a milder drug due to other health issues) things have improved - the pain in my feet is much better, and I can walk better, etc. But it's obviously nothing like normality. My limit in walking is probably about half a mile at a push.

So, what I'm asking is, those of you on stronger medication, how much improvement have you had? Have some of you been able to get back to a somewhat normal life with your DMARDs or biologics? I remember being at the hospital six months ago for a steroid injection and seeing a guy having one of the biologics drugs (don't know which one) and then he just got up and walked off like a "normal" person (excuse the term). While the thought of those stronger drugs is possibly going to play havoc with my bipolar, is walking relatively normally again a possibility with them?

In other words, when you say things are better with your meds, how much better is it?

2

All over the map is where function is. It's hard to say what results you'll get. At one time, I was on Remicade and doing quite well. I worked and had very little pain or issues with PsA. Due to health insurance constraints, I had to stop taking it and switched to Enbrel and haven't been the same since. MOST people do have a good response to the biologics, and are able to live "normal" lives. Some of us have to adjust to a different kind of "normal". Personally, I find the "hunt-and-peck" method of medication selection so frustrating! It is the worst part of my PsA, bust again, MOST people find a good drug with the first or second pick. I think that even those who are doing thier best and appear to be functioning as if they weren't ill at all struggle with morning stiffness, aching with weather changes, and flares. You just need to decide where you want to be. What level of pain and function are you going to be satisfied with, and then work to achieve that goal. It's a very individualized decision, and because we are all so different in our disease and co-morbidities, we can't compare where we are with the status of other patients.

Biologics remain the Cadillac of PsA meds and the majority do get significant improvement on them, but you personally have to weigh out the risks and benefits for your specific situation. What use is pain free feet when you're too much of a mess to leave home? I would be very interested to know, if you were to start a biologic, and have adverse side effects that impact your mental health, how long will it take for the offending drug to leave your system? You may need to explore medications with shorter dosing schedules that leave the body faster.

3

Thanks. My situation is that my bipolar was very bad for about three or four years, with health anxiety as a symptom (or hypochondria depending on what term is being used this week!) and when I was put on sulfasalazine last year it just sent me over the edge due to the mix of side effects (it really didn't like me much) and the constant testing that went with it. I had to come off it (not that it was doing any good) due to side effects (swollen glands, infections, etc) and took a long while before I felt better physically, and I ended up taking some time off from meds altogether (painkillers aside) just to get my head back in a decent place. That's how I ended up on hydroxychloroquine, which has allowed me to have some relief but without the constant tests and worries of side effects (other than headaches in the first week, I've had none). At the moment I'm torn between what I want (to be able to move better) and what I can cope with. I had a routine blood test today just to check inflammation levels etc, and I'm already a nervous wreck about results - nothing logical about it, but there's nothing logical about bipolar! So, even today, I'm wanting one thing but realising it would come at a price.

On the plus side, your use of co-morbidities has made me realise I've been a nut. For the last year I thought it meant we had more chance of popping our clogs as a result of PsA. I really should google things and check their meaning earlier! ;)

Great name, by the way!

4

Well, Darinfan, it kind of depends on whether the pain you are having in your feet is from inflammation or from damage, or from both. If it's inflammation pain, then different medication may make you able to walk further. But if the pain you're feeling is from damage that's already been done, you can take whatever you want, but the damage is still there, and the pain will be too. That's why I always tell people to ask for the most aggressive treatment that your docs are prepared to give you.

Yes, biologics are "strong" in the sense that they are the most powerful treatment in the rheumatologist's arsenal. But in another way, because they are so selective about the specific proteins that they target, they have very few side effects compared to the conventional DMARDs. In that sense they are gentle. You need to discuss this with both your rheumatologist and your psychiatrist: it might just be that the biologics give you the best possibility of treating your PsA without having a negative impact on your BP. (That's just a lay person's hunch. Worth discussing and exploring!)

As far as my own function goes, Enbrel did very well for me for two years. Now I'm on Humira, and my sense is that it's not doing as much. It's all so subjective. But both have quelled my fatigue and given me some energy back, and both have restored some of my range of motion. My depression is better with them than without. I'm still a person with PsA, though, and I still need to practice self-care and to pace myself. The doctors reckon that a 20% improvement qualifies as "success" in the world of biologics. (I'm pretty sure of that, but hope that someone will correct me if I'm wrong.)

5

Thanks. The feet issue was due to tendonitis, which seems to go hand in hand with PsA, and the drugs seem to have cleared that up pretty much entirely (although the ankles still swell a bit). It's my knees that are up and down when it comes to movement. They were quite good at the weekend when we had hot weather (or was it coincidence?) but I confess they were complete you-know-whats again today, and I have no idea how I got out, let alone home! And now I'm going to move house too, so that's going to be entertaining! To be honest, to keep on an even keel with the bipolar, I need to see the next few months out before trying anything else - especially with a house move, which will play the bipolar up (but allow me to avoid stairs, so should help movement!). But I am trying to plan what I'm aiming for after that. Everything is so damned daunting, no matter what you do!

6

The nice thing about many of the bios is that they are a lot less high maintenance thant the DMARDs are. WIth the DMARDS, there are labs mroe often, and many more people report unpleasant side effects that directly impact one's quality of life. The biologics have a more spaced out dosing schedule (anywhere from 1 time a week to once every 8 weeks), and labs are also less frequent too. My favorite was Remicade, even though it was an infusion that I had to get at the doctor's office. I went once every 6 weeks then down to 4 weeks. They did the labs at the same time. The infusion center had wifi, so I would either work, watch some Netflix or take a much needed nap in their comfy recliners. That time in my life was very high pressure due to my work and having those few hours of down-time was PRICELESS.

7

The most important thing is to know what your triggers are (bi-polar wise) anticipate what is coming and take action. But drug wise, your best bet is to sit down with a great pharmacist and ask him. What he will likley tell you is that the action of the biologic meds are so specific, they should have no effect. But check with a psychopharmacology expert, they may have a different point of view.

Here's what I know, I have a Granddaughter with Severe PsA.who has a list of diagnosed disease that would scare anyone. In addition she is brain injured (Car accident with her mom who was killed and her dad KIA while deployed in the Mideast shortly after Psychotropic meds are no stranger in our home including Seroquel and ziprasidone which you may have experience with We make it work. The single biggest factor (other than titration of doses up ward slowly) is her birth control medication. She takes a big dose to completely stop her cycle.

It'll work out. Sadly it like all things PsA related takes time. Tana takes Humira and MTX. She can not take NSAIDS in any measure or every gets warmer......

8

Darinfan, like it's been said before, the biologics have so many different outcomes that the only way to know is to try one.
I was deathly afraid of them.
Now I'm deathly afraid my biologic (Enbrel) will stop working, as they sometimes do.....hopefully, if that happens I'll get right on a different biologic that will work.
Anyway, if you're lucky like I was, your first biologic will make you feel so good that it'll seem miraculous! I was like that person you mentioned--up and nearly running (I was 60 and I really hadn't done any running since about 40) and feeling way better than I had in years! And that was within days after my first injection.
Unfortunately, about 6 weeks later my back went out and I was pretty much bed ridden for a couple weeks and I've had to be very careful with lifting, etc., ever since. My back is pretty good now, just a little wimpy. But, about 6 months after the back thing, my feet "went out".
The back and feet are damaged from years of not treating my PsA--I mentioned that in your other discussion.
So, I had about 6 weeks of feeling about as perfect as a 60-year old can feel, to the next nearly two years with fairly constant pain and not so perfect mobility.
Yes, it's disappointing. And, no, this doesn't necessarily have to be your outcome.
I know you're giving a lot of thought to making a decision about biologics, as you should. They seem to have very few SEs--at least I haven't heard of any. I opted for Enbrel because it's taken once or twice a week, so it leaves your system faster (if you would get sick or have SEs). The only thing I got from it was a painless pink spot at the injection site the first few shots. My white blood cells went slightly below normal for about a year, but my neutrophils were normal so my rheumy said no worries. I got folliculitis on my legs for a very short time which I treated with antibiotic ointment. I took penicillin 10 months ago for strep throat, which caused no other problems. I'm having a little earache now and expecting to hear from my doctor tomorrow about whether or not I need antibiotics. My rheumy told me to miss my Enbrel shot while I'm on antibiotics. I do worry about catching things, but they say if you're only on a biologic and no DMARDS or anything else, you really don't have to worry about your immune system not being adequate. And, there are plenty of people on this site who take biologics and DMARDS and don't seem to have any problems. So, again, good luck and I hope all the feedback is helping you!

9

This is a great question. In a way it is THE question.

I am so much better than I was that I find it hard to shut up about it, once I start! Therefore I'll try to lay it out in a matter of fact way.

- Increasing fatigue & intermittent stiffness in the years leading up to diagnosis. Occasional respite but basically life was one long struggle. I thought that was normal & that I was inadequate.

- Swollen knee 21010, increasingly swollen, increasingly painful. By 2012 walking was difficult. Right knee swelled up too. Come spring: fevers, chills, inability to stay awake for more than a few hours, lost a lot of weight, strange indifferent state of mind, extreme pain, left arm & hand stopped working, I could still walk a few steps I suppose but with great difficulty. Got my diagnosis.

- Treatment (steroids, steroid shots, Methotrexate, Sulfasalazine, Leflunomide) got me moving again, back in the land of the living. Crisis over, basically. But still limping, fatigued, challenged. Methotrexate was the best of the lot.

- Started Humira 2014. I still have PsA, I still have some pains, some odd symptoms, it could go pear-shaped at any time. However, I now have more energy than I did 10 years ago. I can walk for miles, I can do a full days work (I don't have a job anymore but I do work), I can drive for 7 hours relatively comfortably, I appear to be able to cope with physical and mental stress without getting ill or going into meltdown., which is new. Generally speaking I feel pretty damn good and I think I look well too.

I guess what happened to me 4 years ago was one almighty flare which may have calmed down in time. However I am just so much healthier than I have been for many a long year and I can do almost anything I want to.

As I recall, the experience of not being able to walk without assistance, a stick etc. was a great shock to me. I thought I'd better just get used to being mobility-impaired. I think when that happens you can't imagine getting back to normal, it seems out of reach. Evidently it isn't always & I wish I'd asked the same question as you have a few years back.

10

Also, as you will have gathered, I'm a 'knee case' too, they are the bits of me that PsA targets most determinedly. I have some damage in knees which makes me wish I'd started so-called 'aggressive' meds sooner. And also I'm currently in the never never land of selling my house & trying to buy another one.

Knees do respond particularly well to exercise I think. They take tremendous force so the stronger the supporting tendons and muscles, the more the effects of PsA are offset / protected against. I anticipate doing my bit when we move house (though kind of wish I had an excuse to dip out!) and that would have been unimaginable a few years back. It is a stressful business though.

11

Thanks to all of you for the wonderful responses, and for taking the time to share your experiences. As happened with the bipolar, I think I'm in the process of coming to terms with what I have and how it is changing my life, and how to adapt to it - and that will obviously take time, especially with other things going on (and now a house move). I'm not going to try to respond to each person separately at the moment, but understand that your responses and very useful and much appreciated.