To restart treatment or watch and wait

Symptoms & Treatments
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This is a complicated one - so any random thoughts that help me reflect on how to make this decision welcome!

I’ve been taken off treatment to have surgery for Crohn’s (3 weeks ago). With the Crohns’s diagnosis, the specialists have made an assumption that the arthritis and all the other things that fit PsA are related to the Crohn’s - this is ok, they overlap diseases with very similar treatments so I have not argued about it while the Crohn’s is active.

In a weeks time, I see my gastro to talk about if we need to commence Remicade. This is pretty much the last one I have left that is effective for both Crohn’s and all the arthritis, eye inflammation etc.

I’ve got morning stiffness and sore thoracic spine/ribs that lasts for about an hour, a sore foot if I walk too much, minor blepharitis, Crohn’s skin rash. Very mild really at the moment.

There are two reasons to contemplate waiting - I’m only 46 and down to the last (non-experimental) drug approved in Aus, and I have a precancerous condition that is still moving towards cancer.

The statistics for conversion to cancer based on my numbers are 50% in the next two years, 65% in the next 5 years. I have an 11yo daughter. If it eventuates, it is a terminal but sometimes slow moving cancer that can have long periods (~5 years) of remission after first treatment (multiple myeloma).

I feel that there is really not enough data to assess scientifically (they tried Enbrel as a treatment for it, but 4 of 10 people accelerated and there was no positive response in other cases, though there has been a lot of postulation that Remicade and Humira will have a different effect and could help it - not sure I really understand their theory there).

So I’m always happy to read if you have links to papers, but I think it is more about, how am I going to feel when I look back at my decisions? What would you guys be thinking about?

PS I have known about the high risk of cancer for a year or so now, so whist I’m still sad, it does not feel raw or devastating any more

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Well, none of this is really ideal. Do you have any significant damage at this point? How concerning is the risk of the biologic in terms of the precancerous condition? While there aren’t a lot of medications that will treat the Crohn’s and the PsA, are there meds for the Crohn’s disease that you haven’t tried, meds that are specific to it? I think you have but I can’t remember for certain.

I know that in the US, Remicade is one of the few meds that Medicare will cover, so for those who don’t have private insurance that will continue through retirement, it’s something to keep in mind.

Sorry I can’t do more than ask questions. It’s a pretty tough situation to be in.

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No damage that I am aware of (no xrays specifically for arthritis though). I’m assuming the fact that I am absent pain and mobility issues when medication is working properly though means no damage.

How concerning is the risk of the biologic? Well, your questions made me google again, and I was wrong - there is a study released from 2020 that actually gives some numbers. And they look like really good news - treatment with a conventional DMARD plus anti-TNF biologic actually confers lower risk of MM. (Treatment with some other biologic targets - like IL6 or B cell / T cell targets seemed like they might increase risk though). The abstract is very brief and I can’t really tell how well the study was done. But still encouraging.

With regards to other meds, not a lot of options left really. Traditional IBD meds like the 5-ASA group (including sulfasalazine), don’t work for my type of Crohn’s, and the older immunomodulators like Azathioprine are more solidly linked to cancer development than the biologics, in addition to which my gastro is quite convinced that these older drugs are very unlikely to have an impact because Methotrexate, Budesonide, Humira, Cimzia, and Stelara have all failed one way or another.

On the list left is Remicade, Tysabri, and Entyvio, however both Tysabri and Entyvio are gut-specific and do not deal with the arthritis or other systemic inflammation.

So thankyou for your questions, because it got me out searching again to see if new research had been published, which it has, showing a lower risk for MM with biologics, so I can take that out of the equation.

At least that means I am just pondering the straightforward question of whether I commence the Remicade based on a bit of arthritis and other stuff here and there, or wait so I can bring it in when the disease(s) next flare up.

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That sounds like a perfectly reasonable approach. And as you said, now you have a little bit more information as to the safety of remicade for your situation. I have a friend who was diagnosed with multiple myeloma about 3 years ago. He’s doing fairly well at this point after having had a bone marrow transplant. I don’t know enough about the disease though to know how long-term that is.

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I know too little about your other conditions to be of much practical help. But this approach instinctively makes sense to me right now in your present predicament if that helps at all. It’s likely later you may well need PsA help more than you do now. It’s a Hobson’s choice though which makes me so sad for you. Further later you may well find other meds have been approved too, so potentially the choice of meds increases. But I’m guessing Australia isn’t rushing to approve more PsA meds?

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You’re right I think @Poo_therapy - Australia is incredibly conservative when it comes to biologics, and the government seems to be very aware of how much they are costing it.

Tonight the carpal tunnel has started to return (surgery -yes surgery on my bowel - all but cured it for a few weeks). Since I need my hands to work, I might find I know what I have to do within a week :grimacing:

I think in tntlamb’s analogy over on badgery’s thread, my wrists are the tyres :joy::joy:

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It’s funny. I had trigger finger surgery on both thumbs a few years ago. It worked, yes. My thumbs no longer trigger. But the tendons do still get easily swollen with overuse, and painful. I’ve decided it’s enough of a fix, and I won’t hesitate to do similar releases. Actually I did the deQuervain releases too.

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The problem is you won’t KNOW if the Biologic is preventing damge (joint) unless you quit using it and get damage… That being said I get your concern and its a good one. I disgaree (no surprise) with your docs. 30% of FEMALE PsA patients have IBD issues. It mavy be semantics but that being the case I’d say your docs have their carts and horses mixed up. I’d think that unless it were the other way around PsA would be primary. heres the thing usually MTX is used with Remicaid (Ilike remicaid the best of all I have taken) and frankly if I miss my MTX I know it. Perhaps you after a talk with Rheumy a wait to start Remicaid while just on MTX mighet be an option. One of the Beauties of Remicaid is the multiple dosing options/frequencey it has. I believe if used for IBD issues its more and more frequentt for IBD… My DX changes depending on what meds I’m on at the time…

LOL on the releases. I almost had them on my calendar as a regular thing till I got my new shoulders, haven’t had one since. (5 and 3 years)

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Unfortunately MTX has only ever given me mild effects on peripheral symptoms- it was pretty well useless for axial (for which I can no longer take NSAIDs) and other things such as eyes and carpal tunnel. I’m so used to it I’ve been taking it anyway until a few weeks before surgery - no point removing a drug in the middle of an uncontrolled flare, even if it’s only providing minor help,. I expect I’ll take it again but be surprised if it does much.

I agree with you about the cart and the horse - at the moment I don’t even have a Rheumy as the last one literally dismissed me after the crohns diagnosis. Australia is a funny place for rheumatology.

You are right about the dosing options for Remicade- the gastros can do just about whatever they want with it. There’s another follow up test 3 months time - might wait and see if the arthritis returns with a vengeance or that follow up shows anything. Maybe it’s a good idea to look for a Rheumy who’s willing to work with me as well.

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Keep in Mind Jen THE FIRST JOB of meds is to prevent Progression of the disease. Effect on Symptoms is a bonus. At this point MTX might just prevent progression during your vacation. If nothing else you wouldn’t have to worry about antibody production when resuming Remicaid…

I get where you are at more than you know. I’m on blood thinners from my stroke. Then my IBD stuff reared its ugly head and between that and the blood thinners had a GI bleed and generalized “seepage” My spine has started to ankylose (Fuse). The pain used to be mostly controlled by topical NSAIDs (Flector patch etc) but now can’t even use those let alone orals. If you recall how much I despise even the mention of spinal surgery, you can appreciate my desperation in that I am doctoring with a Neuro Surgeon… not to mention upper and lower scopes gtom the GI guy every three month. How many folks do you know buying Bowel Prep by the case lol. Hang in there. Building a team is Beetch…

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Good point about the first job of the meds - and I am so used to MTX now that it no longer has any perceptible side effects (and apparently my liver is one part of me that works well), so it would be silly not to resume really!

I can only imagine how tricky the combination of stroke and GI bleed makes to manage everything, I hope you get some reasonable options from the neurosurgeon. I was super lucky that my most affected bit that was dangerous was small could be removed without much consequence. Hopefully that means I’ve got years of low-grade symptoms before it gets dangerous again.

I know what you mean about the bowel prep - but in Australia it was getting enough toilet paper in the midst of the COVID panic buying that was a massive challenge :joy::joy:

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You mentioned multiple myeloma which I assume means you have a low platelet count, along with ocular pain / head aches, and a rash. Have you been evaluated for Idiopathic Thrombocytopenic Purpura?

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Hi Keith, no I have the precancerous condition which was picked up in some blood tests then confirmed by bone marrow biopsy - protein M spike, whacky free light chains (all of which pretty well unique to the condition).

Technically at this stage most doctors consider it asymptomatic, so really no symptoms to evaluate for anything else.

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Jen, I hope you start to feel better. Are the “whacky free light chains” Bence Jones?

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My bence Jones was negative in 2016 when they first found all this, thankfully. The whacky free light chains are from a serum test - absolute values of around 400 when limit of normal is 27, but that alone can be from a few things, so more importantly they use a ratio - normal range 0.31 -1.56, mine about 40 and consistently trending up, myeloma can be variable, but by the time you get to 100 your clone is almost certainly behaving like a cancer.

Scientifically really interesting stuff, but on a personal level kind of like having to watch an impending head on collision with a road train, but at a snails pace and you still need to live your life and pay the Mortage at the same time.

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You raise an important point Jen, many have an added stress of accumulated financial challenges to worry about. Many life paths can be altered by a lack of resources to pay the mortgage, support a family and pay for the right treatment. Regular teeth maintenance might have to wait and prescription glasses get left outdated as jobs might be lost and disability coverage is inadequate. Finances are a very real part of Living with Psoriatic Arthritis.

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Too true @Amos, I think until it happens to us or someone we love, when we think of chronic diseases like PsA, we probably have a picture in our head of someone in their house paid off, sad that they have to retire early and give up hiking, when the reality for many is the juggling between a life that is nowhere near complete and often major financial pressures made worse by inability to work full time. There are definitely times I wonder if a universal income is not such a bad idea!!

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Or at least free healthcare! Our NHS is by no means perfect but it does help the likes of us a lot. An awful lot.

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FWIW just went through that whole workup - my self after $60,000.00 including a fullbody and heart MRI, as well as pre qualification for marrow transplant the conclusion: IBD secondary to PsA… The Gift that keeps on giving lol. My rheumies conclusion: “check with me next time before your PCP goes apeshit again…” It was a GI bleed. or in short Horse vs. Zebra.

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Yes, it was really interesting to read in that other link you gave that IBD is now considered a secondary disease to PsA. Fascinating stuff.

A different Rhuemy might go with that, though the fact that I had a gut episode (undiagnosed at the time) at 16, we’ll before any P or A, seems to make them more certain they want to put IBD first.

I feel like I’m a Zorse - if there’s a solid solution between PsA and IBD I’m smack in the middle. The trick here in Australia is that the gastros have so much more access to medication options than the Rheumy’s, I think it’s probably better to let them leave me up the IBD end, as long as my arthritis isn’t being dismissed. My gastroenterologist is excellent and treats aggressively, so as long as I can continue to see him I think it will work.

And good point on the mention of the ASCT - that might happen in time anyway, and I hadn’t realised they were investigating it for IBD - sounds like it at least has a good chance of resetting the immune system sufficiently to either induce remission or at least change refractory IBD to TNF-treatable IBD.

Sorry to hear you must have been considered pretty refractory to get to that work up - so if it is IBD secondary to PsA then they clearly need to switch up the PsA treatment - what is the plan?

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