I have been suffering from psa since 2012. My main problem is that my body develops antobodies against biologics relatively quickly rendering them ineffective. So far i have tried enbrel, humira, cosentyx along with methotrexate and arava.
Now have been on cyclosporine and stelara since November 2018.
However i feel that the disease is making progress and is getting worse. My symptoms are the following: I have two swollen fingers (index & middle) on my right hand and my grip is very weak and i feel stiffness and pain on my lower back and on my both knees. Sometimes i feel a deep acute pain on the left shoulderblade especially when i sneeze or breathe deeply (don’t worry it isn’t heart attack ).
My rheumatologist told me that stelara is a very slow medication so i should be patient. I am about to take my third dose of stelara next week.
Yesterday i vistited another rheumatologist to take another opinion. He told me that stelara is excellent at psoriasis but not as good at arthritis. He stated that he will switch me back to humira. When i told him that humira despite being miraculous, got rejected by my body after eight months because my plantar fascilitis relapsed, he claimed that psa does not affect plantar fascias and he plans to prescribe me humira along with methotrexate which is the most potent combination (I took humira with arava in the past).
However i am a bit worried because, as far as i know you are not allowed to get back to an older biologic and psa does cause inflammation at plantar fascias.
And here is the dilemma… Should i give another try to stelara or trust the rheumatologist i visited yesterday? What is your experience from stelara?
I’m still fairly new at all of this and I don’t have any good advice for you except that I would be wary of someone who says that this crazy disease doesn’t affect parts of your feet. That just doesn’t make any sense. Although it’s possible to have mechanical issues that aren’t related to autoimmune inflammation, maybe? But you might have to have specific needling tests under ultrasound to figure that out.
In lieu of any useful advice I will just wish you lots of good luck!
Wow that is confusing!
I’d be inclined to stick with Stelara for a while. I don’t see any mileage in switching after just 2 doses, it needs a little longer.
There again, while I suspect that you are right about PsA and Plantar Fasciitis, it seems a little odd to have stopped Humira on the basis of one localised issue. I imagine there must have been more to it because you have certainly had a lot of experience of trying different biologics, but it’s just that ‘stuff’ does happen while on bios, they don’t stop the PsA altogether unfortunately.
Hi Magpie, i appreciate your response!! I had an MRI scan at my feet at the past. The feet appeared to have no degenerative damage except a serious bone edema which was the culprit of the pain. My rheumy attributed this to inflammation so she decided to switch me from humira to cosentux…
Sybil thank you for your time too!! Yes, i stopped taking humira due to the pain on my feet… one symptom only. I can not judje if the decision was right however the pain was present 24 hours a day with the worst part of the story being during the night… We all know how to cope with pain during the day but a pain which keeps us awake all night long is really unbearable… So the rheumy decided to stop me from humira and prescibed me cosentyx.
However now that i have a flare up involving more joints my feet don’t bother me at all. It seems weird… I suppose that it has to do with the efficacy of biologics, differend biologics protect different parts of our bodies… or presumably my immune system eventually “reconciled” with my feet and turned against other parts of my body… Who knows?
I truly don’t think different biologics protect different parts of your body. That’s not how the science works. Different biologics afffect diffierent parts of the cell, in the hope that your disease is more affected by that particular part of the cell. So for example humira and enbrel deal with TFNa. Each affect that differently, enbrel circulates it, mopping up, whereas Humira attaches to it.
Within TFNa there are interleukins, usually given numbers like 23, 12 17 etc. The newer biologics deal with one or more of these numbers and so on.
What biologics are trying to do is make your immune system behave better overall. It’s your immune system that attacks any part of you (and all parts of your body are open to attack too).
I’m concerned your original rheumy is bouncing you through biologics in this way. And actually think your second rheumy might be making the most sense.
I did very well on humira for like 8ish months as well. The first 24 hrs after injection was like a dream. But it fizzled. Stelara did nothing. Now on cosentyx. It’s pretty good so far. Been a few months. That rheumatologist is on crack. I wouldn’t go back to him. My rheumy feels like it’s usually Achilles but he admits that it can be anywhere! My biggest tails off whoahhhhhhhhh are my fingers…poor grip, tendinitis in fingers etc. My right IT band, my neck and lower back. My plantar fasciitis has been in remission since the biologics. But LITERALLY, all my tendons get inflammed at some point. I’ve even had my pubic symphasis tendon get inflammed… Talk about crazy. I’ve had dactylitis in my 2 right hand fingers. It’s been awful on my self esteem. However, I’ve learned I just can’t do much. For break thru tendinitis, I stop the mobic and take torodol. And then I’ll do low dose steroids. I don’t like methotrexate or or sulfasalizine. But the cosentyx send ok… Maybe try that, bcz you and I seem similar. Forget that Dr though!!!
My thoughts… Lol… For what they they’re worth
Ironically I have virtually the same symptoms and signs as you do. Unfortunately I have not been on any of the same meds. Every med I was put on I was on for at least 6 months and every one of them worked well at first but like you the meds became less effective and a switch was in order. I’ve been on many biologics via infusion and one that’s an injection. My PSA is little rash/lot of arthritis, extreme pain in both hands and both feet, ribs (the worst of them all), both hips occassionally and the base of my skull (2nd worst pain). With over 100 types of arthritis and a limited number of meds to treat them we’re all looking for the needle of relief in our individual haystacks of pain. Good luck on your version of the PSA venture.
I am so sorry that you are suffering with so much pain and with so little relief.
I am not sure that my story will help, but here goes. I have been on methotrexate for 4 to 5 years. The rheumatologist who first diagnosed me told me that she would put me right on a biologic, but I was diagnosed with cancer the same month. A biologic would make the cancer “fluff up,” to use her words. So no biologic for me.
She left practice after being diagnosed with RA herself and I started with a new rheumatologist. Methotrexate managed most of my pain but my low back pain got worse and worse with muscle spasms that I could not tolerate. I had an MRI to look for sacroilitis. It was negative. We tried Humira for four months but it had no effect. Zip.
Fast forward to January, 2019, I went to my regular PCP who finally ordered an X-ray which showed substantial degeneration of the spine, both the disks and the bony parts. This diagnosis has pointed me in the right direction for treatment. I’ve had both a procedure (RFA) and now take a daily muscle relaxant.
I try to keep my medication list short and simple, so the fact that I have added a daily medication tells you how motivated I am to avoid those spasms.
The RFA and the meds give me about a 75% improvement on pain. I am not pain free, but the pain is now much more bearable.
I wish you well on the search for relief. May all of us find what we need to manage this illness and especially to manage pain.
Well, today i took the results of my x-ray and MRI scan. The MRI revealed inflammation at the right sacroiliac joint, without signs of degeneration. The left side is unaffected.
The X-ray showed inflammation at the fingers without damage at joints and bones… so far so good… at least a don’t have any permanet damage.
I didn’t get any scan at knees and shoulderblade due to insurance restrictions at medical expenses.
I called my original rheumy, told her that my condition worsened and answered me that stelara have failed and we may have to change medication. I have been taking stelara since November 2018 (initial dose on November and second shot on December… afterwards the therapeutic protocol is one shot every 3 months… I got another shot on March… Now i was supposed to take a shot on June 28. I didn’t because i decided to go to another doctor to take a second opinion)… When i asked her whether i should keep taking stelara she was definite… the drug has failed because i have been on it for almost 7 months, i should have been better at least… so i arranged an appointment with her on Monday… I will go to see what she will tell me.
After that i am planning to see a third doctor so as to get a more valid aspect…
It is confusing and frustrating but ok i don’t lose my optimism!
Sounds like another world … I started Humira in 2014 and the only change since then has been to swap it for the bio similar Imraldi. In that time various negative things have happened including increasing pain and erosive damage to feet and hands. Due to the erosions I’m ‘being monitored’ to see if a change may be necessary but with 8 months between appointments at the moment I’m not sure what that really means.
Such different approaches. Can’t help thinking that maybe there should be a middle way.
When you say ‘I should have been better at least’, in what sense are you not better or indeed worse? Is there functional deterioration? Are tasks & moving around difficult? Continued swelling? Or is it all about radiographic findings?
I can’t work out whether you’re being messed around or have very vigilant rheumies …
Hi Sybil and thank you for your reply!!
By saying i am worse i mean that i have more inflamed joints compared to what i had on November 2018 when i started stelara. For example on November i had one swollen finger, now i have 2 (index & middle)… With 2 swollen fingers my right hand is barely usable… i can’t even push the knife to peel an apple… And of course soreness at knees and lower back have deteriorated as of November…
I get very anxious whenever i have to switch medication, however at this point i consider that i don’t have another option…
You are right, am confused but as for rheumies i think that it has to do with a somewhat different mentality. Here in Greece doctors give drugs very very easily… Although i disagree with this practice i believe that in some cases medication must be administered as soon as possible . After being diagnosed with arthritis she put me on biologics immediately… i am confident this was of great importance for my joints.
I have a question… Imraldi is the biosimilar of humira… do you think that it is better than the original? Have you seen any improvement regarding tolerability and effectiveness?
That sounds like very good practice!
And I can see that getting more obviously inflamed joints may well be grounds for changing biologics.
The jury’s out on Imraldi so far. I started it in February this year and was already having a bit of a rocky ride on Humira, more pain, reduced range of physical ability and then the discovery of erosions in January. I’m finally enjoying a great patch, well I feel pretty damn good anyway. The pattern was similar with Humira i.e. no pattern! Ask me again at the end of the year! Might you be trying Imraldi, do you think?
Great that we have a member in Greece!
I was crippled with plantar fasciitis pain due to PsA before I was diagnosed in 2012. I still get pain there sometimes even with a biologic and methotrexate. PsA can cause pain in the ligaments and tendons. I would be concerned about your rheumy’s advice.
I also fail on biologics about every 13-15 months. I hope you find something that relieves your plantar fasciitis pain - it can be awful. Meanwhile, when I have this pain, I ice my feet or soak them in an ice bath. It helps reduce the pain significantly for me .
Unfortunately failure on biologics after some period of time is common for some sufferers. I read somewhere that biologics are protein like drugs so the immune system develops antibodies which neutralize biologics after some months… I don’t know whether this is true but it makes some sense.
I think that plantar fascilitis and temporomandibular joint pain are among the worst arthritic pains… Ice on feet helps a lot because it reduces inflammation. Additionally you can try some stretches and have somebody massage your feet and legs before bedtime.
Tried stelara and it did work very well for the psorisis, but not effective at all for the Arthritis.