Quantcast

Living with Psoriatic Arthritis (PsA)

Stelara and Humira

#1

Just wondering how many ppl are on this?

I started first biologic Humira about 1 yr ago and it’s failing. Is it normal to have it fail so quickly? Others?

I want stelara because I see it’s good with enthesitis.

Do most ppl have enthesitis or JOINT pain?

Thank you!

0 Likes

#2

Hi LaMomma,

It seems to be quite varied. I was on Humira for 5 years, but for the last two of those, it was giving me a reaction (not failing per se, but not an effective med), so got 3 good years out of it. Enbrel was great for the arthritis but didn’t address my stomach issues, so it failed part of the problem up front. A few others have posted about their biologics failing after only a few months, especially if they’ve had to go off it, while others still are on 5 or 6 years and still going strong.

Good thing is, just because one fails quickly, does not mean the next one will.

1 Like

#3

Doesn’t enthesitis cause joint pain? I am confused…

0 Likes

#4

Actually it doesn’t though it may seem that way depending. The places where your tendons and ligaments meet your bones are called entheses and that where enthesitis occurs. Depending on the joint type the entheses may be pretty far removed from the joint. In fingers it may feel like the joints but in the elbow it won’t. Its commonly said ligaments bind bone to bone and tendons muscle to bone. This is sort of true. but there are also tendons in the hands and the entheses is far removed. Lots of folks claim enthesitis, but more often than not it isn’t. HOWEVER long term inflammation/arthritis can damage those entheses. No biologic will have an effect.

image

Then there is what is called Psoriatic Enthesitis which is different and often confused with enthisitis which is an acute condition not chronic. Alnmost exclusivley locations for psoroiatic enthesitis include the bottoms of the feet, the Achilles’ tendons, and the places where ligaments attach to the ribs, spine, and pelvis. It is a distinctive feature of psoriatic arthritis and doesn’t occur with any other disease. It is OFTEN confused with Costochondritis even by some docs. Costo occurs only where is an inflammation of the cartilage that connects a rib to the sternum. If it occurs at the spine its psoriatic enthesitis. Psoriatic Enthesitis may be controlled by biologics, but the pain won’t be. That’s up to PT, steroids and NSAIDS.

The existence of it has no relation to the efficacy of the Bio meds. Changing biologic that are working in other areas of your body because of “enthesiis” is akin to farting in the wind and makes litlle sense (to me) It takes very little inflammation over a short time to damage the little dimples called entheses. At best all one can hope for from the Biologics is not making things worse or preventing it from happening. Unless its an acute attack it won’t go away with biologics.

2 Likes

#5

That makes sense. Do you have a diagram showing the locations of where the enthesis gets effected in the elbows, and knees?
My problem is trying to gauge what pain is OA, or PsA caused permeant damage, and what the biologics can help. I know I have a lot of OA from wear and tear in my hands.
About the chest, would this look like it is caused by PsA?
There is a lot of action at the stenum.
I was told my spine is primarily DISH, but the biologic seems to help with the pain in the SIJ’s…

1 Like

#6

Results WBMRI allowed evaluation of 888 (53%) of 1680 sites investigated, and 19 (54%) of 35 entheses had a readability >70%. The percentage agreement between WBMRI and clinical enthesitis was 49–100%, when compared at the level of the individual entheses. Enthesitis on WBMRI was observed in 148 (17%) of the entheseal sites, and was frequently present at greater trochanters (55%) and Achilles (43%) and supraspinate (23%) tendon insertions in patients and HS. At the first mentioned two locations enthesitis often appeared without clinical signs of enthesitis. Patients and HS differed significantly in one of the new WBMRI enthesitis scores. Patients and HS differed significantly in one of the new WBMRI enthesitis scores, and this score correlated weakly with BASDAI question 4 (tenderness in relation to entheses), BASDAI and patient global (ρ=0.29–0.31, p<0.05).
This looks promising, If you can do a whole body MRI to dx PsA I think would be a better approach.
These are the spots they identified:
Interesting the “K” sites, on my pelvic MRI I had erosion there, I showed it to my GP, he said “it has no wear and tear, why is it inflammed?” So I have most of the alphabet acting up…

0 Likes

#7

Hi @Jon_sparky!

You’ve had a lot of imaging done from what I’ve seen you post. I know that I’ve had some baseline xrays done, but just select joints. Otherwise x rays done when I go in for specific issues.

What is the reason for the extensive imaging? Do you find that it makes a difference for you in terms of treatment decisions? I know that this level of imaging has never been brought up to me, so I was curious.

1 Like

#8

I had a situation where my Rheumy was looking at my bloodwork and saw that I had a elevated protein, she wrote the wrong letter, instead of IgM, she wrote IgA, then reading her notes she got real worried I had bone cancer, so ordered a full body bone scan and full set of xrays. Then the cancer doctor said she had got it wrong and I didn’t need the imaging.
Turns out
I have early signs of a rare blood cancer waldenstrom’s macroblobulemia, luckily no bone cancer. However they found a couple of anomolies in the nuclear scan and did additional imaging. I had also gotten MRI of my Lumbar, due to a ruptured disc, and a abnormal additional lumbar transitional vertebrae, and one for my SIJ’s, then cervical for my bulging discs in my neck, and finally thoracic mri. So I am well imaged!
Between my Pain doctor, Rheumy, Spine surgeon, and Hematologist, I have had a lot of imaging! So a whole lot of nothing, that can be surgically corrected, but good reference. I don’t mind the mri, but I do not need anymore radiation, with the Ct’s, xrays and fluoroscopes.
My cancer doctor told me “you haveto protect yourself from the doctors, first they do a MRI, then a CT, hen they want a biopsy”, funny, because that is what he did!

1 Like

#9

Wow! Very well imaged indeed!

It’s good that they’re monitoring you regarding the early cancer findings, although that’s got to be tough information to have.

2 Likes

#10

The bone marrow biopsy was fun, I was in light twilight sleep, so was concsious of the procedure, they must have taken 6 full swings from a mallet to get the biopsy needle through the iliac bone, I had a bunch of funny line to tell thrm, but couldn’t talk…

1 Like

#11

Oh wow! Not fun at all

0 Likes

#12

Ok. I’m convinced mine is enthesitis. It was in my neck originally. I got bilat plantar fasciitis for 3 to 4 yrs. Then my hip that I thought was only my hip turned out to be IT band! Ugh. Now, my hands, elbows and shoulders are aweful. I feel on my right shoulder the tendon pain. So, are you really REALLY saying that stelara won’t help the pain by bringing the inflammation down? It seems like they claim it targets I-23 and the other one…19 maybe? Oh man, give me some hope…

0 Likes

#13

So what meds helped you most?

0 Likes

#14

Ironiclly, a antimalarial Plaquenil helped the most, but my Rheumy said it was not good for psoriasis, I said I am fine, been on it for 2 years, they took me off. Nothing works very well for me, I am on Remicade and methotrexate right now, tried Stelara, sulfazine,and Enbrel before, didn’t see much improvement.

But everyone is different, so maybe it will be a wonder drug for you!

1 Like

#15

If its acute, it might if the pain is the result of long term inflammation (nothing reverses permanent damage or osteo that results from long term inflammation) it may have some effect. The thing is NO biologic is effective against peripheral inflammation. Their greatest effect is axial. That is the main reason they are frequently paired with a DMARD such as MTX. You need both and in addition frequently either a low dose steroid and an NSAID is required as well. Where it gets complicated if pick one Bio, one NSAID, One Steroid, and one DMARD, you have 16 possible ways to combine those meds to get maximum effect. If you are choosing between the 3 DMARDs, 4 Bios, 1 steroid and 5 most common NSAID used for PsA, you have 169 ways to combine them to get maximum effect. Thus what we call here the “Gap” it takes time but over 80% of patients DO get relief in 14 months of trial and error.

This is where the experience and expertise of your Rheumy plays in. It is also why the pooch gets screwed if your present to you PCP or ER for “pain” and they react (most don’t anymore) If narcos ar added for pain NOTHING will work as your whole immune system is reset (even once) They will get there and usually within a year.

When dealing with enthisitis, IF you are not constantly following a stretching/exercise regime things rust into and there is no way to know if anything is working. Tight muscles, tendons etc will continue to cause pain even if your meds are working perfectly.
My number 2 daughter was on the pro tennis tour for several years (after winning a national championship in College and my number 3 son an NFL linebacker (mostly on the scout team) They had to work out DAILY for 5 - 6 hours, not to get in shape, or even stay in shape, (practice and play did that) but rather to keep those muscles and tendons from rusting. Those workouts were PAINFUL (but not as painful as not working out) and frankly is why they both left the sports they loved.

Carry a few extra pounds and pain levels will go up, overindulge in certain foods (high in sugar, gluten, nightshades etc) and pain levels will go up. Miss a day of stretching/exercise pain levels will skyrocket.

I’ve said this before, but its repeated more often than I have. There is plenty of hope, but the first thing one needs understand is that medications TREAT PsA (they don’t fix it) To control it is a full time job. Diet/lifestyle (weight control etc,) Medication, and movement are the three legs of the stool that supports you (a three legged stool if you never live on a farm is the MOST stable platform on rough ground, a four legged stool is always unstable unless the ground under is perfect) So make your plan simple. The more you add to it (supplements, devices etc) the higher the likelihood it won’t work.

4 Likes

#16

This! It’s how it is, inescapable reality.

4 Likes

#17

For myself, I am doing well concidering, except for not sleeping well and being stiff as a board for the first hour getting up. It took a while to determine what is damage, what is OA from a life in construction and what is being helped by biologics and MTX.
I have lsot 15 pounds, so just about at my target weight, hikes up in the hilss around where I live.
Did have several years of inflammation and muscle tension, since in my 20’s, so close to 40 years of constant muscle tension. The first time that was reversed, it was when I took Plaquenil. That is one of the things bioloics do for me, neck, shoulders, posterial muscles, thighs and the biggest improvement is calf muscles. Som improvement in the SIj’s. Hard to tell with the spine, ruptured disc in my lower back several bulging and degenerated disc.
But besides that doing pretty well.

1 Like

#18

Jon, do you have more joint or enthesitis?

1 Like

#19

Have both enthesitis and joint pain, until treatment w mtxt plus cosentyx now plus anti inflammatory diet no sugar no carb

1 Like

#20

I think it is mostly enthesis related,I will get US on two fingers next month, they are either very bad OA damage or both OA and PsA, if that is possible. Enthetits is effecting feet, ankles, knees, hips, possibly spine, shoulders, elbows wrists, and possibly chest.

0 Likes