Does it get any better on biologics

General
1

I guess I am just feeling down because I have been on Enbrel for a little over 3 months and I am still suffering. I can walk better now, but things are still rough.

My question for the group is:

Do any of the medications make it a lot better? Or, do they jsut make it so you can function, but still live in pain?

2

I don’t have a lot of pain tamac. Sometimes I do I guess, but infrequently enough that it’s quickly forgotten. Digging deeper, I suppose I easily get an achey body that I have to drag around as it were, and then I do feel pretty sorry for myself, but my mobility is good these days so I can ‘move it off’ - without exercise / activity I’d probably suffer a lot more.

A big question is how much damage is there? Before starting Humira I had no way of knowing. But it worked so well that all swollen joints went down & I now reckon I have bits and pieces of damage in many joints, hence the pain that comes randomly / due to inactivity. But nothing catastrophic.

I have been in severe pain when joints were swollen. Gruesome fatigue, the lot. Mtx helped unlock my knees but it was Humira that gave me the result I think you’re hoping for. I am sorry you are still suffering. What does your rheumy say? Is a change of biologic on the cards?

3

Hi tamac. Sorry you’re not getting adequate results from Humira…I agree with Sybil—maybe it’s time to try a different biologic.
I’m doing really well on Enbrel—at least the fatigue, stiffness, tendinitis—that’s gone. But, I live with pain in my feet all the time (mostly when I’m on them, and sometimes they hurt a little even when I’m not on them). I know what’s wrong with them—it’s damage from PsA—so there’s no getting rid of that pain. I usually don’t take pain meds unless it’s to the “8 - 9” pain level. Usually it’s about 5 or 6 and I just tolerate it. I guess a person just gets used to it.
But you have the inflammation “all over” pain of PsA, it sounds like. That’s worse! Maybe it is time to talk with your rheumy about a change in meds. Good luck!

4

I have Palmoplantar Pustular Psoriatic Arthritis along w/plaque, inverse, nail, scalp psoriasis. I’ve been thru methotrexate and all pill form treatments to no avail. I have literally a garbage can size of miscellaneous steroid creams. I have tried every biologic available including Remicade. They either did zip or resulted in bad side effects. The most positive one that looked as if it was working was cyclosporine. Unfortunately it was also working on my kidneys and had to stop. I had 7 months of Cosentyx last, with roaring fungal infections (esophageal, ears, groin - still battling that area) so I had to stop that, and have begun Tremfya today. If this one doesn’t work, God help me.

5

Have been on cosentyx now for maybe three months, have suspended cortisone pills and suffer for it, but am not resorting to painkillers at the moment and it seems to have a good effect, am walking even though stiff getting up am also methotrexate

1 Like
6

Thanks everyone for the feedback. I guess I may just be impatient. Today I am having terrible pain in the area above my hips. It has moved 4 times since yesterday from one side to the other. I have a call into my rhuemy.

7

My rheumatologist says that she doesn’t worry about pain that moves. She worries about pain that stays in a joint or joints. Doesn’t make it easier to handle, but there it is.

8

I have to see my doc next week and I am not sure what to tell him. Following up on my original post, what is feeling good? On the Enbrel I have gone from barely being able to walk to walking but a lot of pain in my hips and shoulders. Do the question for those of you that suffer with pain, what is doing well? No pain? Some pain? How should I bee feeling if I am doing well? I have been in the Enbrel a little over 4 months, so I have to give it a few more months, but what do I tell my doctor?

9

Well, I guess only you can speak for you, but in your situation, I’d just paraphrase exactly what you wrote on here - “doc, it’s better, but it’s still really rough, and not where I want to be. Is it worth trying another?”

And of course, as we always say, give him/her practical examples, exactly as you did on this thread - “Before I could only walk X meters total. Now I can walk Y meters. But I really need to be able to walk Z meters to fulfill my life needs, and even the Y meters is very hard and hurting like heck. It seems unlikely I’m going to make Z meters with the current plan. What can we do differently?”