Lymphocytosis / high lymphocytes count on Remicade / Infliximab ??

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Kannassee

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Hi everyone...I started Remicade a few months ago, and I am a success story I think.....C reactive protein less than 0.5, calprotectin from 500 to 87.....mucosal healing in colonoscopy, no symptoms, gaining weight.....but....

When they did a CBC a month ago, everything was normal except my lymphocytes numbers.....they were high around 4350......maybe a virus!!
I had another CBC count yesterday and their numbers kept going higher...now around 4800.....a month later......maybe, still a virus??

My primary care physician is not worried at all about this but I had never had that issue before....I began to google around and....well you can imagine.....Leukemias etc etc etc......I though that maybe there was a link between Infliximab and Lymphocytosis, but I could not find much info about that.....only the following paper:

https://academic.oup.com/ecco-jcc/article/13/Supplement_1/S322/5300858
If it does not goes down eventually either the PCP or GI will refer me to an hematologist I assume. But according to that article it is reversible, assuming that it is not caused by "something" else.??....Although I am almost sure that wont be the case!!!

I am thinking of trying to get an appointment with my GI but he is usually busy....in the meantime I though maybe someone here may share their thoughts?
 
Your blood has more than a few part of an equation in a sense that equals 100%
Was this lymphocytes or absolute lymphocytes
https://www.sightdx.com/knowledge-center/lymphocyte
In 10 plus years
My kiddo has had high lymphocytes, neutrophils etc a and sometimes low values
It’s only if things get really low do they tend to worry.
We always got a letter stating the doc reviewed the bloodwork and the results were within the expected values for the conditions and medications my child was on.
Even with off numbers
Now if you had swollen lymph nodes … different story .
That said my kiddo had that once - they removed it -extra intestinal inflammation in his lymph node due to crohns nothing more …

It’s hard not to worry or google
But please ask your Gi since they have a lot more experience on why numbers seem off in bloodwork
 
Hello my little penguin, thanks for the reply!!!.....by the way 10 plus years of experience is also a lot of first hand experience!!!

The PCP was not concerned.
My GI is on vacation but I will check with him for sure.

Those were absolute values by the way, it was:

last month Lymphocytes 4350 Neutrophils 3038 N/L ratio 0.69.....kinda low
this month Lymphocytes 4800 Neutrophils 5000 N/L ratio 1.04......more normal I think. Probably just some virus

No swollen lymph nodes, no fevers, no night sweats. Just tired sometimes. I am really not worried very much anymore, and everybody is different,.....I just though it was an interesting coincidence maybe.
 
I’m having a similar issue. My WBC was up and has been up before and comes back down. But to be cautious my GI has sent me to a hematologist to get him to check for anything. I spoke to the hemotologist today and he’s going to do blood work. Neither seem concerned, but of course I can’t sleep. And I won’t get results for the blood work for awhile. Ugh!
 
Well, my absolute lymphocytes numbers continued to go down from a high of 4800 2 months ago to 4135 and just a couple of days ago down to 3900!!!

.....still lymphocytosis but not so bad.....I had today my Remicade infusion, I am going to check them in a week, I am curious if what is pushing them up is the Remicade??...if they keep going down it was some virus, not the Remicade.

I did some other research online and for IBD disease they had that figure of about 25% of patients with reversible lymphocytosis, so it means that at least 75% of patients do not develop it.

I also found a couple of other interesting studies but one was for "TNF-alpha blockers and rheumatoid and psoriatic arthritis patients", it seems that only about 12% percent of patients developed lymphocytosis versus 25% with IBD, that means 88% do not develop it, see link below:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5322781/
The other was a Danish study "Infliximab induces clonal expansion of gamma delta γδ T cells in Crohn's Disease: a predictor of lymphoma risk?? "
I really hope that they got it wrong with this article lol

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069033/
Anyway, in a couple of weeks I have the appointment with the hematologist, lets see what he will say.

My GI told me that he will not change anything until he sees me.
 
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Kannassee said:
Hi everyone...I started Remicade a few months ago, and I am a success story I think.....C reactive protein less than 0.5, calprotectin from 500 to 87.....mucosal healing in colonoscopy, no symptoms, gaining weight.....but....

When they did a CBC a month ago, everything was normal except my lymphocytes numbers.....they were high around 4350......maybe a virus!!
I had another CBC count yesterday and their numbers kept going higher...now around 4800.....a month later......maybe, still a virus??

My primary care physician is not worried at all about this but I had never had that issue before....I began to google around and....well you can imagine.....Leukemias etc etc etc......I though that maybe there was a link between Infliximab and Lymphocytosis, but I could not find much info about that.....only the following paper:

https://academic.oup.com/ecco-jcc/article/13/Supplement_1/S322/5300858
If it does not goes down eventually either the PCP or GI will refer me to an hematologist I assume. But according to that article it is reversible, assuming that it is not caused by "something" else.??....Although I am almost sure that wont be the case!!!

I am thinking of trying to get an appointment with my GI but he is usually busy....in the meantime I though maybe someone here may share their thoughts?
Click to expand...
I was just approved for my Stelara Infusions after being in hospital with 2 bowel obstructions following up with IV anti inflammatory and currently nearing end of prednisone step down. Wishing you and your family all the best in maintaining remission. I have been living with Crohns for 20 years now. Had the resection in 2001.
 
About 2 months ago they found a lump in my neck and PET scan with ultrasound guided biopsy found lymphoma. This caused a delay in humira and stelara being recommended as I had to see an oncologist. I have never had a history of lymhoma prior to this year. Immune system has been all over the place this year for me.
 
Chronsbusters, I'm sorry to hear about your lymphoma diagnosis. Have you begun treatment for lymphoma? Did the oncologist mention any concerns about the medications you are taking for Crohn's?
 
My next appointment with the Oncologist is in January. They are doing a wait and see as I am in the middle of/tapering my prednisone for Crohns Disease and have just today been approved for Stelara Infusions. I have never been diagnosed with lymphoma before this year. The PET SCAN showed the follicular lymphoma in 2 areas, my neck and abdomen. Initial intake suggested they may do Chemotherapy. But the Oncologist is going wait and see for now.
 
I just googled and learned about "active monitoring" without treatment for some early lymphoma. I had never heard of that before. Is that what your doctor is doing?

I asked about Crohn's medicine because some of them have increased risk of malignancy and could be contraindicated in people who have cancer.
 
Well, if one of the docs is considering the wait and see thats good since that probably means its not very agressive or that its a very incipient thing,

They do the same thing when they found funny cells in the prostate. If you want maybe get a 2 opinion fir your piece of mind.

I dont know much about Stelara, it sounds like a good medicine since you are targeting just a piece of the immune system that has to do with the gut inflamation, the TNF blockers are more like shooting a bazooka to kill a hummingbird lol….but the good thing is that they work.

By the way in one of the studies that I was reading above they choose precisely the Stelara as a control to compare it with the TNF inhibitors, it seems that it dors not increase the lymp numbers.

My gastro told me that he would like ideally to prescribe it for me but the insurance companies want to try first the TNF, I assume they are “cheaper”.

Maybe now if my lymphocytisis is caused by the infliximab that could be an excuse for switching.

Hugs. Keep us posted!!!
 
Lam123 said:
I’m having a similar issue. My WBC was up and has been up before and comes back down. But to be cautious my GI has sent me to a hematologist to get him to check for anything. I spoke to the hemotologist today and he’s going to do blood work. Neither seem concerned, but of course I can’t sleep. And I won’t get results for the blood work for awhile. Ugh!
Click to expand...

well finally I got the appointment with the hematologist, my lymphocytes went down to 3500 and then again to the 5000's ' He ordered flow cytometry and a bunch of other tests.
I have not spoken with him yet but judging from what I saw online the flow cytometry report says that the lymphocites are polyclonal.....I think the bad ones are the monoclonal ones.
So with me its happening exactly what was described in those papers about TNF and a percentage of patients with RA and Crohns. I don't know why but I always get the maximum dose of 10 mg/kg instead of 3mg or 5mg, I am in remision. Maybe if the dose was smaller I would not have this issue. Lets see what they think, maybe a smaller dose or another biologic.
 
Are you or were you also getting azathioprine or 6MP along with your Remicade to knock down the anti-drug antibodies? While most of the current biologics have warning labels about increased risk of various cancers, the thiopurines (Aza & 6MP) carry particular risks of lymphoid cancers, escpecially in older patients.
 
Scipio said:
Are you or were you also getting azathioprine or 6MP along with your Remicade to knock down the anti-drug antibodies? While most of the current biologics have warning labels about increased risk of various cancers, the thiopurines (Aza & 6MP) carry particular risks of lymphoid cancers, escpecially in older patients.
Click to expand...
I was taking immuran before humira, but I have never taken them together.
 
Lam123 said:
I was taking immuran before humira, but I have never taken them together.
Click to expand...

Immuran (azathioprine) carries its own increased risk of lymphoma whether used alone or with a biologic. The risk is pretty low until about age 50 when it starts to climb, and it really takes off after age 60.
 
Scipio said:
Immuran (azathioprine) carries its own increased risk of lymphoma whether used alone or with a biologic. The risk is pretty low until about age 50 when it starts to climb, and it really takes off after age 60.
Click to expand...
I took it in my 20’s
 
I have an appoint next week in the Crohns and Colitis Center, maybe they know something about reactive lymphocytosis and Remicade,

I am happy with Remicade but now my lymp are still 5600 a month after the infusion??

Maybe I have an infection or virus that gets activated when my Remi blood amount gets higher after the infusionS?..... or its an allergic reaction?..... My GI is not worried about them since they are polyclonal but I would like to know more why they go up and down between infusions. Lets see what they think since this is more an academic/research center.
 
Not sure if the number is high enough to be alarmed but I dont think its a bad idea to have your peripheral blood smear evaluated by a hematologist.
 
Not really.

They went up after my last infusion, then they went down to the mid 3000's but now they are again around 4300.

I read in some studies in the Internet that said there was some type of correlation between TNF and Lymp. but my Dr says that in his personal experience that is not the case.
I have an appointment next week with the hematologist, I will find out, hopefully they did not went up after the Remicade infussion, maybe it is related to something else.
I read that reactive lymphocytes have to do with viruses, but that won't last so many months.....also related to drug reactions and to inflammatory states (Crohn's??)
But I have never been better regarding Crohns, my CR protein is around 0.4 and Calprotectin is 46.
Maybe I generate them and since they can not go to the gut they stay around LOL.....
I am trying not to think much about them, so far they are a mystery!!!....
 
Hi Kannasee, any update on this?

We have floated between 3,700 and 4,700 (absolute) over the past 10 months.
 
I have been more or less like that, mine went a little bit higher into the 5000's a couple of times only and then they go back.
By the way yesterday I got the latest CBC results and they were 3290....thats normal but I missed my latest Remicade infusion due to insurance issues
My new insurance wont approve Remicade but Inflectra it seems.
The hematologist I saw is not worried at all about that. It seems it is a reaction maybe to the Remicade.
I had a colonoscopy done last week and I don't have any areas of inflammation in the colon and terminal ileum, there is no evidence of active disease anywhere. The only bad thing is that my stricture was back after 11 months and the Dr had to dilate it again with the balloon, it is at the site of my previous anastomosis in the terminal ileum....maybe I willl need to get surgery if this is going to come back yearly.
I think this time they put a lot of propofol or whatever in my sedation because my blood pressure went down into 80/50.....and then later I had a terrible headache.
So probably I will need to get surgery to fix the anastomosis it seems later this year or next year.
The good news is that there is no active Crohns anywhere in the colon or terminal ileum.
 
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well.....no more lymphocytosis.....!!!....

I dont know if it was caused by the Infliximab, or prostatitis or by a prostate cancer, or something else.....

They found that I had a very small prostate cancer, but it was not a nice one so they took away my prostate a month ago. The first doc did not want to do surgery because of my previous sygmoid colon anastomosys right there.....too many adhesions.

So I was going to have radiation. But radiation and Crohns.....not a good mix.....I was able to find a very experienced surgeon that told me that he would try if he could take it away without damaging the rectum.....the last thing I needed was a fistula......

He did it and hopefully the doc took everything away.!!!

But it seems that anyway all those organs are so close together that now I have the worst case of tenesmus and proctitis of my life. Really painful.
On prednisone and hydrocortisone suppositories now. Like the old times 5 years ago.

I just prefer not to eat so I wont have to deal with those two things later in the day. I just don't know what to eat.

The radiation doc did not want me on the Infliximab.....well Inflectra....the new insurance did not wanted to pay for the Remicade. So I have been biologics free for a while and I was fine until after the surgery.

Now my CBC with differential is like it was in the old times before Remicade.....neutrophiles thru the roof, and low lymphocites. The ratio between neutrophiles and lymphocites went totally the other way. It seems my Crohns or UC is somehow related to that.

So I went to see my Crohns Dr. but much to my chagrin he does not want to put me on Inflectra now.....He wants me to be on Stelara....a small molecule??.....He says that I may have antibodies to Infliximab, since I was on Remicade before and I may have a reaction and since I had the prostate cancer and it was Stage 3Ta, there is a chance to fight with the insurance company, maybe they would approve a switch to Stelara. It seems its a very safe biologic.

I do not think that Remicade had anything to do with the cancer but he wants me anyway to be on something else.

The problem is that I don't know how long it is going to take for the insurance to approve the switch if they do. And the Prednisone and the hydrocortisone supp are not helping much. And it is very painful. I dont want to get addicted to pain medicines. The only positive thing is that I am loosing weight, since was a little bit overweight.

I prefer the high lymphocites vs my actual situation big time.

I just found that they have something like Stelara ....Skyrizi??? but it targets only IL23 and not IL12....supposedly very good...and new....I can not imagine how much that would cost.

But at least I am cancer free...(I hope)!!!

I was reading that guys with Crohns disease may have a higher risk of having also Prostate cancer, probably because of all the inflammation.

For me it was a big surprise because I did not have symptoms. Nobody in my family had that thing before. And my PSA was low and normal but the "free" PSA was not. So it is important for us middle aged guys with Crohns to be aware of the PSA levels.
 
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While your waiting for Stelara approval
What about adding in formula only (een )? To help
Things and get weight up .
Uceris rectal foam helped my Ds with proctitus .
My kiddo has been on Stelara since 2017
No issues with it
He takes 90 mg every 4 weeks
Standard dose is 90 mg every 8 weeks
Skyrizi isn’t approved for crohns yet (still in trials -as far as I know in the US )
Psoriasis dose would be too low for crohns
 
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I am going to ask about the Uceris and find out about the diet the Dr said something about a mesalamine
i think part of it is my fault since I have been taking NSAIDS sometimes for inflamation and pain after the surgery. But they are very bad for Crohns in my case. Well one day at a time, it will get better. Thanks for the ideas.
 
Kannassee said:
So I went to see my Crohns Dr. but much to my chagrin he does not want to put me on Inflectra now.....He wants me to be on Stelara....a small molecule??.....He says that I may have antibodies to Infliximab, since I was on Remicade before and I may have a reaction and since I had the prostate cancer and it was Stage 3Ta, there is a chance to fight with the insurance company, maybe they would approve a switch to Stelara. It seems its a very safe biologic.
Click to expand...

Stelara is a pretty good drug. I'm on it myself. But it is not a small molecule. It's another biologic and it is not cheaper than infliximab. In fact the retail price is a lot more expensive than infliximab. Hopefully your insurance will cover it. But if your insurance company frowns at infliximab, they are going to positively gag when they see the Stelara list price. And I haven't seen the numbers yet, but Skyrizi is unlikely to be much better, price-wise, and will likely be worse.

Depending on the dose, your low lymphocytes could be due to the prednisone and hydrocortisone you are taking. High doses of corticosteroids are known to knock down blood lymphocyte levels.

Good luck with your insurance....
 
Well….it is what it is!!!…..we just need to try.
If not well Inflectra will do it hopefully.
I wanted to have the infusion ASAP but he wanted to try Stelera. Maybe it is a safer drug? I dont know.
 
Kannassee said:
Well….it is what it is!!!…..we just need to try.
If not well Inflectra will do it hopefully.
I wanted to have the infusion ASAP but he wanted to try Stelera. Maybe it is a safer drug? I dont know.
Click to expand...

Stelara is a safer drug than Inflectra/infliximab. It has many of the same scary safety warnings on the label, but the incidence of actual side effects is reported to be lower for Stelara than for the anti-TNFs such as infliximab. I have been on it for going on six years now, and I have had no side effects or adverse events from the drug.
 

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