Hi all!
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 (donât worry it isnât 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?
Iâm still fairly new at all of this and I donât have any good advice for you except that I would be wary of someone who says that this crazy disease doesnât affect parts of your feet. That just doesnât make any sense. Although itâs possible to have mechanical issues that arenât 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!
Iâd be inclined to stick with Stelara for a while. I donât 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 itâs just that âstuffâ does happen while on bios, they donât 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 cosentuxâŠ
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 donât 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 âreconciledâ with my feet and turned against other parts of my body⊠Who knows?
I truly donât think different biologics protect different parts of your body. Thatâs 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. Itâs your immune system that attacks any part of you (and all parts of your body are open to attack too).
Iâm 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. Itâs pretty good so far. Been a few months. That rheumatologist is on crack. I wouldnât go back to him. My rheumy feels like itâs usually Achilles but he admits that it can be anywhere! My biggest tails off whoahhhhhhhhh are my fingersâŠpoor 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. Iâve even had my pubic symphasis tendon get inflammed⊠Talk about crazy. Iâve had dactylitis in my 2 right hand fingers. Itâs been awful on my self esteem. However, Iâve learned I just canât do much. For break thru tendinitis, I stop the mobic and take torodol. And then Iâll do low dose steroids. I donât 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 theyâre worth 
God bless,
Anne
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. Iâve been on many biologics via infusion and one thatâs 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 weâre 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 âfluff up,â 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. Iâve 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 donât have any permanet damage.
I didnât 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 didnât 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 aspectâŠ
It is confusing and frustrating but ok i donât 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 Iâm âbeing monitoredâ to see if a change may be necessary but with 8 months between appointments at the moment Iâm not sure what that really means.
Such different approaches. Canât help thinking that maybe there should be a middle way.
When you say âI should have been better at leastâ, 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 canât work out whether youâre being messed around or have very vigilant rheumies âŠ
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 canât even push the knife to peel an apple⊠And of course soreness at knees and lower back have deteriorated as of NovemberâŠ
I get very anxious whenever i have to switch medication, however at this point i consider that i donât have another optionâŠ
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 juryâs 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. Iâm 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 rheumyâs 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 donât 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.
@Frances @Vaggelis #me too. I just switched to my 8th biologic medication since being diagnosed in 2012. They peter out within 8-14 months and some donât work at all. By far my best response is to the broad-based biologics (TNFα). I had a LOOOOOOONNNNNGGG talk to my rheumy last week about using MTX with biologics as a way to control antibody reaction and keep the drug working longer and he said recent research has shown that it doesnât make a lot of difference (although he didnât share the research so I canât quote you sources). As someone who was pretty much bedridden from my 6 month MTX trial pre-biologics thatâs not an option that is worth considering.
I have been very scared of running out of medication options for PsA and my rheumy reassured me that this will not happen. That relieved some stress and also allowed me to realize that when I think the meds arenât working, thatâs the time to switch and not to wait until Iâm absolutely positively sure theyâre not working, by which time I feel so awful I want to curl up in bed and give up (last week).
janeatiu eight biologics in 7 years WOW!!!
Your rheymyâs opinion is very optimistic.!! mine approached me completely differently.
In my last appointment she told me that there are two categories of biologics, the anti-tnfs and interleukine inhibitors. So far i have failed in 2 anti-tnfs (enbrel & humira) and one interleukine inhibitor (cosentyx).
For the time being i continue taking my second interleukine inhibitor biologic (stelara) since last November, without some significant effect.
When i told her to switch me to another biologic she told me that since i had failed to 2 anti-tnfs the chances are to fail again if i try another anti-tnf because they all work similarly. By saying this she gave me two options: whether i try an intravenous anti-tnf (considered the most potent) or continue stelara adding injectable methotrexate and prezolon 15mg per day and reduce the daily cyclosporine dosage from 150 mg to 100 mg.
I finally opted for the second option an leave the intravanous anti-tnf as a last resortâŠ
I donât know if my rheymyâs claim is true⊠but leaving me with only 2 options scared me a lot so i decided to go with the most conservative choise.
After seeing 3 doctors i have perceived that their mentality is that the biologics shouldnât be changed until all the possible combinations of biologics and disease modifiers have failed. I donât know if this practice is rightâŠ
Anyway I took my third shot of mtx three days ago. I have seen some improvement however the day after shot i feel soooo fatigued⊠It is a side effect of mtx i know⊠i have to wait until my body gets adapted to it.
On September i will see my rheumy to re-assess the progressâŠ
Ohhh big story tiresome storyâŠ
Your Rheumy is correct in that the two biologics are anti-tnfs and interleukin inhibitors, but that is where her understanding stops. They are all some form monoclonal DNA (synthetic or human) that bind to those proteins. Because everyoneâs DNA is unique the binding properties are also unique (as are the individuals production of antibodies to prevent the binding) there is no evidence that failing one or the other predicts the failure of another. THERE IS evidence that MTX helps biologics work with peripheral symptoms and extends the life of some biologics. The mentality that the biologics shouldnât be changed until all the possible combinations of biologics and disease modifiers have failed is correct. Moreover recent studies indicate that simply stopping a biologic will cause a massive flare (whether or not it was effective) 48% of the time as opposed to less than 20% of the time decreasing the dose. The thinking on that is the biologics are effective in what they do, but it doesnât always translate to an improvement in syptomsâŠ
Thanks for that clarification - that was always my understanding. Here in the UK they demand youâre a month off one biologic before starting another, irrespective it seems of half life or full life properties, which I thought was a bit odd really since there are different lengths of half life, some which extend beyond 28 days etc. So thereâs no decreasing whatsoever of the dose if a change of biologic is prescribed. Just an abrupt halt.
And just to show how different each individual person can be, I flared badly before stopping one anti-TFNa biologic (a biosimilar to Enbrel), stopped flaring for my statutory 28 days which turned into about 7 weeks in reality and have now started my second anti-TFNa biologic (a biosimilar to Humira) still doing pretty much OK with already the slightest improvement after the first dose. Fingers crossed it keeps improving things. Further Iâm on no DMARD with it, mxt being unsuitable for me and sulfasalazine hating me when biologics are added.
When I was first prescribed the Enbrel biosimilar my joint count was around 29 joints affected with 3 swollen. 11 months later when it was decided I should come off it, my joint count was 48 joints affected with 5 swollen. Clear enough evidence that I was then flaring badly. Presently I canât see that Iâve any swollen joints anymore and yes some joints remain troublesome or affected but certainly that count now wouldnât be 48 of them. And that was the case before I took my first shot of the Humira biosimilar a week ago too. So I guess Iâm firmly in the 52% camp of not flaring when stopping.
Yeahâit seems like a lot, doesnât it? There were three in the middle that did absolutely nothing for me, so in reality the ones that helped included: Enbrel Humira, Otezla, Cosentyx and now Taltz. My rheumy is with @tntlamb on combos w/MTX (which I didnât bear well, unfortunately). Our discussions to change are often over a 2-3 month time frame in which he monitors my blood work, I monitor my symptoms (the obvious and also more âsense of wellbeingâ ones) and we collaborate on a plan.
I feel incredibly fortunate to work full time in a pretty mentally exhausting job (I am often convening and presenting to groups and creating processes and strategies with diverse participants) so my health is critical to my work. Slippages in the effectiveness of my meds are, then, evident when I canât keep up the pace.
Only on one occasion have I had to wait between biologics, for which Iâm grateful. Most times Iâve been able to start quickly on the new meds. Of course it always takes an age before the insurance pre-auth process is completed and rheumy samples help fill that gap.
Iâm in no way qualified to say whom you should trust from among your medical professional team, but my rheumy at least sides with lamb here. His âlaymanâsâ translation to me was that the drug needs to have a big enough effect across a broad spectrum, or within an IL family. Sometimes thereâs a better response one way or another, but Iâm a case in point of having had success (and reduction of efficacy) with each category.