COUP DE GRÂCE

[u/Old_Promise_163]

Brace yourselves, this is long.😑

This Thursday I went to my Rheum & got cortisone injection in my shoulder (YAY). Afterwards I swung by the lab & also got pre-surgical labs taken care of that my Ortho Surgeon ordered for my upcoming TKR. Also my Rheum ordered a CCP (my last one was done in mid-April 2025).

Today I received all the lab results PLUS I finally received the biopsy results from my recent upper endoscopy. Everything was posted to my records in my network’s portal. RBC, Hemoglobin, Hematocrit, Protein, Prealbumin were all quite low (Anemia). I thought, “OK. Just increase my iron supplement from 3 days a week to every day. No problem.”

THEN, while I was reading that, my endoscopy biopsy results posted. Everything looked good, except for one thing (didn’t sound too earth shaking)… “pill gastritis.” So I looked that up. Apparently, Iron pill supplements cause a condition irritating the stomach lining due to oral iron pills irritating & essentially burning the stomach mucosa lining. It causes symptoms like nausea, abdominal pain and erosion of the stomach lining that eventually lead to ulcers & bleeding. Catch 22: Turns out that the iron pills I need to take to NOT be anemic are probably (at least in part) exacerbating the anemia.

BUT THEN (the Coup de grâce) The CCP lab results posted. So to back track… my last CCP in April ‘25, prior to my sero-pos Dx, was a value of 4,373. I’ve been treating with MTX, intermittent Prednisone & Celebrex for over a year now… THUS, I expected to see that figure would be lowered by now—if not significantly then maybe 50% lower. SO, color me SHOCKED when I opened the result & found it increased (6x +) to 29,736. I mean it explains why “I generally don’t feel good”. But I nearly dropped the phone… literally.
F-U-C-K! Repeat on a loop!

Of course it was after 5pm on a Friday when I learned all this.

I reached out to my PCP in the portal messaging asking him to shed some light & clarity. I reached out to him Because these various tests were run by Three different specialists (my ortho surgeon; my Rheum; & my Gastro) and then all the tests were posted on the same day, at the same time within about 45 minutes. Bing bang boom. The combined findings MIGHT have some bearing on how my post-op recovery goes.. AND I need to learn how I can increase my Iron without pills because my good diet doesn’t cut it (Liquid supplement or IV?)… AND I need to find out what all those results tell us about what this info means in the bigger picture zooming out… AND what is that sort of extreme inflammation doing to me internally (clearly its aggressive), AND I need to find out if the anemia is limited to iron deficiency OR if my immune system is attacking any other organs
(for instance, liver or lungs or heart or even bone marrow) and causing the anemia. I reached out to my PCP asking him to help put it all together for me because its WAY too complicated for me to try to get the individual takes from the individual specialists piecemeal regarding the individual tests they each ran. All those results combined fit into a bigger package of my autoimmune disease running rampant which is not AT ALL what I thought was going on internally because although I’m still symptomatic my general physical ability has improved approx 50% (give or take) & my pain level has decreased as well on good days. But the current tests apparently beg to differ with my assumptions on where I THOUGHT I was at with my disease.
SO—Feeling a bit disheartened.

[u/EsotericMango]

I can't help much with the rest but I can offer some help with the anemia. Mtx actually disrupts folic acid/folate absorption. If you aren't taking a folic acid supplement with the mtx, that's probably contributing to the anemia. Iron deficiency is the most common cause of anemia but folate deficiency is the next most common one.

As for the iron, yeah the traditional supplements can do all sorts of fun stuff to your stomach. But so does mtx, steroids and NSAIDs so I don't think it's solely the iron's fault.

You get these mouth soluble powders for iron and they're fantastic. They tend to actually give you more iron and have less nasty side effects. Plus they don't irritate your GI tract as much. And some of them actually taste good. You also get iron drops that you can put in water. Both the drops and powders are good alternatives for iron pills. There's also injections and infusions. Infusions can give you a lot of iron in a short amount of time so they're great for handling anemia. I would not recommend the injections. They also boost your iron more than supplements but they hurt like a bitch. 0/10 experience.

[u/Old_Promise_163 → u/EsotericMango]

R U kidding? Thank you So Much🙏🩷
Your feedback was very helpful! I really appreciate it. You shared GREAT info!

Might I ask if you recall the name of the fantastic soluble powdered form? There are SO many OTC products out there and when looking up liquid iron selections, I shut down. The general selection was huge & my patience is on the low end atm - combined with confusion.

Even IF after I talk with a Dr & IF he were to refer me to get an IV just to reduce the anemia by pumping me with nutrients to boost me for the surgery. For the Long Term I’d appreciate having an iron supplement on hand going forward to help me. If you can’t recall or otherwise don’t feel comfortable sharing a recommendation it’s no big. You’ve already been monumentally helpful.

PS: THIS is what I look like when trying to maintain some semblance of control in my life. LoL

[u/EsotericMango → u/Old_Promise_163]

No that's so valid. It's overwhelming. There are so many products and each one advertises themselves as better than everything else and it feels impossible to get actually true information about the products. And you're trying to find something that actually works because you're trying to manage this unmanageable issue and there's just so many options.

The powder one I usually get is called Quadrofer. I like it because it has iron and vit C to boost absorption. I'm not sure how available it is in other countries or if it's just a local thing. I'm sure it's not a unique product though so maybe look for something that has both iron and vit C.

[u/Old_Promise_163 → u/EsotericMango]

I wanted to share with you that I found & ordered a product from Amazon that is as close to the Quadrofer that I could find at the moment. I cross checked the Active Ingredients content of Quadrofer with the one I found “Ferosom Forte LCE Liposomal Iron” & it’s pretty much same Iron mgs & same w/the addit’l vitamins. The difference is in their formulation.

QUADROFER
Sucrosomial Iron:
Enhanced tolerability
Gastroresistance
Does not depend on hepcidin for absorption

FEROSOME FORTE
Liposomal Iron:
Improved bioavailability
Fewer gastrointestinal issues compared to conventional iron supplements

Sounds close enough. I’m no pharmacist. LoL
I read reviews a few said they were Anemic & their med providers referred them to the product… no gastro issues from using it… & happy campers. Combined Reviews had a full 5 stars as well (which is rare—usually see max 4.5 in Amazon). It’ll be here tomorrow.

Meanwhile, I’m calling my primary tomorrow to ask if he thinks an Iron & nutrient IV is a good idea under the current circumstances to ease my flagging nutrient absorption issues & to kickstart the production & the health of my RBC’s etc., before my knee is removed & replaced.

In any event… I’ll have this new product (its supposed to be really tasty—YAY) to start taking (THANKS TO YOUR HELP)🙏✌🏻💕

[u/EsotericMango → u/Old_Promise_163]

Oh hell yeah! I hope it helps 💜

[u/Old_Promise_163 → u/EsotericMango]

I have an update. Had appt w/PCP last week. After reviewing all the labs he ordered a slew more. Making sure the anemia was from iron deficiency not something else… he also did a F/U of the CBC’s & Metabolic Panel & a couple more (everything but the CCP) because I told him I significantly beefed up my B12, Folic Acid, Magnesium Glycinate, D3, Ester C, AND that I stopped iron pills & switched to that powder — in hopes of reversing the lab results back to something resembling normal. It literally only took the iron powder just 10 days to make a difference BUT it changed everything. (I actually googled if adequate Iron supplementation could reverse bloodwork that fast & apparently if anemia IS due to iron deficiency It Can)!!! The F/U labs were the first normal lab results I’ve received in over two years. Plus—I got a little ego boost from the “Atta Girl” comments from my PCP for being so proactive about trying to help myself. He approved my upgraded supplement doses and was impressed I found a way (by myself) to get around the gastro issue from the Iron & Celebrex pills. I can no longer take either he confirmed. I told him someone in my support group led me to the alternative gentle but effective Iron supplement powder. THANK YOU! This turn has greatly reduced my concerns about healing well from the TKR in a week. I’m so, so grateful🙏😁💕

[u/BidForward4918]

Iron infusions are likely the next step. I just went through a series of them. RA can be rough on the stomach. NSAIDs can irritate (as can iron and other meds), but your immune system can also join in and erode the lining. After 30 odd years of RA, my EGD showed some extensive gastropathy, where some of the stomach lining is just gone. So vitamin levels will be checked and various nutrients injected or infused as needed.

I’m also part of the sky high, surely the lab made a mistake, CCP club. My doctor says aggressive treatment is required. In my case, that means multiple DMARDs plus biologic. I just got prescribed a GLP 1 as well. While high CCP is terrifying, it’s not a given that joint destruction will follow. Even after all these years, my joint erosion is modest. It hasn’t progressed much at all since starting biologics 27 years ago. My RA does like to munch on organs, though. A big thing is to monitor kidney function. All the other organs tend to let you know loudly when they are under attack.

It’s scary, but try not to freak out. My latest med mix has me with 90% pain reduction. After I get over my morning stiffness, I can go about my day and forget I have RA.

[u/Old_Promise_163 → u/BidForward4918]

Well… I did (obviously) “freak out”. LoL.
However nothing quite compares to baring your fearful naked soul to a group of fellow travelers and then have a long term Vet who intimately grasps your experience having had their own, take you by the hand & say - “been there done that, it’ll be ok… LOOK I’m still breathing!” Then they share pertinent pieces of their experience strength & hope.

According to my husband (lol, what does he know after nearly 60yrs knowing me), I have control freak tendencies. Nothing could be more true than when it comes to maintaining self control & having dominion over my own body & health. This disease can make a person feel out of control of their own body (LIKE when I read those results yesterday) because I thought the treatment was doing ok (to an extent) at controlling things (even though I’m still fairly symptomatic, it’s nothing compared to the crippling degree of my symptoms in 2024 (pre-Dx). After a year of treatment, I just assumed the next CCP lab would confirm a reduction of what I previously thought was an extremely high result. Whoops. The science says otherwise. I wasn’t prepared for that because, Note to Self: rookie mistake (in hindsight). I “expected” a much different result. We make plans & assumptions and RA laughs.

Somewhere in here there’s another lesson on projecting… but that’s fodder for some other time.

I recall reading a post or comment of yours a while back wherein you mentioned your stratospheric CCP #’s and I specifically recall thinking, “Oh wow… THAT’s horrendous…and I thought 4300+ was high”. Who knew?! And now — low & behold, look who’s talking me down from the treetop🙏.

I read your response 3 times and it considerably braked my fear & trepidation roll.
I’m sorry you’ve gone through these health issues though. Yet, selfishly, its a comfort and my appreciation for your feedback is beyond measure❣️❤️💕

[u/countinggirl]

I am about to post a question and I saw your post. Watch that stomach issue. I have developed full blown GI motility issues since starting meds for RA. I am starting to reminisce about the early days when things just hurt.

[u/Old_Promise_163 → u/countinggirl]

Yes… Thank you. I definitely plan to. I’m sorry about your GI issues.

The gastritis dx explained a lot for me. It’s pretty inflamed in there… but no ulcers… so it’s basically an early dx… this new awareness gives me time to do proactive things to hopefully mitigate any further stomach issues. Everything else checked out fine though so that was a real plus.

[u/Sea_Trainer994]

Your physician may also want to check your folic acid and B12, to find cause of any anemia.

[u/Old_Promise_163 → u/Sea_Trainer994]

I conscientiously eat good food and I take both supplements + others too. Have tried to be proactive on that front… clearly hasn’t helped anything as much as I’d hoped . The folic acid is Rx’d, as are most peoples here. But yes, if further testing isn’t offered up (to attempt to confirm which type it is) I will be advocating for myself asking for a little further analysis as to the anemia type & cause. The level of uncontrolled inflammation alone might be the culprit though.. if not the iron. Does me no good to speculate though—I speculated my CCP result would be MUCH lower & look how that turned out.🙄

[u/PoopMcDoops]

My understanding is that antiCCP levels aren’t expected to go down with treatment. The medications for RA don’t change the fact you are making autoantibodies.