Vaccine - 2nd dose interval

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Tesscorm

Tesscorm

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Hi all,

I think this will possibly be of interest more to the Canadian members as our second doses of vaccines are being stretched out to 16 weeks, rather than the 3-4 weeks recommended by the vaccine manufacturers (not sure if this is being done in the U.S. as well).

CCFC has a downloadable letter available on its site which can be used to request an earlier second dose if you are on immunotherapy. S's doctor has signed the letter requesting that he receive his second dose 21 days after his first shot.

I don't know if the vaccine clinic can override the request?? S is going for his first shot tomorrow and will take the letter with him. I'll let you know if he has any pushback on scheduling his second dose.

(Also, his GI's office recommended that the vaccine be given one week apart from his infusion.)
 
US is still sticking to 21 days apart for Pfizer and 28 days for moderna as per original studies
One pharmacy was stretching it and the g
There was a study I posted on main r&d section
That stated immunosuppressed folks only get 17% protection after the first shot
It isn’t until the second shot that those numbers go up
What they go up to isn’t known
There is a study on going for immunosuppressed folks

they don’t really know what happens when they stretch out the time line yet
It wasn’t studied
It may help things or hurt or do nothing different
It’s too hard to say at this point

hope they don’t push his shot out

still trying to get Ds cleared by allergy here to get his shot
 
MLP, I was going to ask you a question re allergies....

My daughter will now be starting on weekly allergy shots. As she (and I) are both just getting over Covid, her GP suggested to hold off on starting the allergy shots while she was fighting off covid (my daughter said dr mentioned 'something' about not having the shots while her immune system was fighting covid?? Sorry, can't be more specific).

However, now my question is would there be any considerations in having the vaccine while taking allergy shots? The shots are to be scheduled weekly and, I believe, could continue for approx. one year. If it was only a matter of waiting for a vaccine 'now' and another in 3 weeks, I'd say just hold off on the allergy shots but... our vaccine schedule here is a shot now and another in 4 months!

Any thoughts?
 
Hope for allergy shots for only a year but Ds was on them for 5 years

when your immune system is active (fighting any infection) you have to skip the allergy shot to avoid the system over reacting with anaphylaxis
Add in the shots can cause large hives -Ds used to swell from joint to joint
Flushing
Sometimes increased temp etc
Skin gets hot to the touch at the injection site
Person gets tired

as far as vaccines
Ds was 4 when he started allergy shots and 9 or 10 when he stopped
So he had yearly flu vaccines as well as the normal 5 year old starting school vaccines
I can’t remember if he had to hold his allergy shot for a week since they was 12 -13 years ago

definitely ask her allergist
They should have a plan for allergy shots and covid vaccine
Make sure they give her an epi pen to carry to and from the shots since allergy shots can cause anaphylaxis afterwards
 
Ugh, more worries! But, thanks for the info! I wasn't sure if I was overthinking any vaccine/allergy shot concern. It hadn't even crossed my mind until her dr told her to hold off when she was sick (of course, she was in isolation anyway). I'll remind her to be sure to speak with allergist before booking vaccine.

Yes, dr told her they were thinking a year but could be more.

But, I really wasn't aware of so many possible side effects. :eek: This is not going to be fun! She's tough when it comes to sports but seems to have a low threshold/tolerance when it comes to things like hives, rashes, fever, crankiness, etc. (The next few years could be loonnnggg! I hope travel opens up soon! lol)

She has her epi pens; I'll make sure she's aware to carry them to apptmt.

Thanks again for your help and advice!! :)
 
Wanted to add Ds was severe in his allergies
Which is why he started shots at age 4
She may have less side effects
 
Her allergy test results showed reactions to most of the allergens tested were 4 and 4+. Information on test results indicated a range of 0-4, with 4 being most allergic. :rolleyes:

I'll hope for the best!
 
My younger daughter had a BAD flare with the first COVID vaccine. I don't think either her IBD or AS were well-controlled when she had the vaccine though. Because of the flare, her GI is having her stretch out the interval from 3 weeks to 10 weeks - the idea is to get her IBD in remission and hope she avoids an IBD flare. It was her worst IBD flare to date, which is why we seriously thought about even not doing the vaccine but eventually decided it was worth it after consulting with her rheumatologist and an infectious disease specialist.

I should add that her reaction is absolutely atypical and neither her GI nor her rheumatologist have had many patients who flared - maybe 1 or 2 but that's it. M does have a REALLY overactive immune system - her CRP has been high for 5 years despite TWO biologics and MTX or another immunomodulator.

Anyway, even at 10 weeks, her ID doc says it will give her more durable protection.

That stated immunosuppressed folks only get 17% protection after the first shot
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I read this too but this study was done on transplant patients. They tend to be on Cellcept or much higher doses of Azathioprine. We asked M's rheumatologist and she said that is not the same as being on an anti-TNF or MTX or even two biologics. But anti-TNFs may have some effect but it should not be as bad as being on high doses of Aza or Tacro or Cellcept.

They are now doing studies on autoimmune patients, I believe.
 
I'm not sure of my son's outcome yet. He had his first shot yesterday but there was some mix-up and his name wasn't on the system at all to receive the vaccine. They ended up giving him his first vaccine but weren't able to book a second apptmt. They gave him contact info to schedule second dose (hopefully, in 21 days).
 
According to the study, if a person has only 17% protection, does this mean they still remain with a higher vulnerability of catching the virus but will be protected in the sense that they will likely only catch a mild version rather than a serious infection?
 
The study said only 17% of patients had antibodies I think ("seroconverted" is the term they use). But besides antibodies (which come from B cells),there is also T cell immunity. So you could have no detectable antibodies, and still have some immunity (I have two girls who love immunology but I can't really explain what that means).

There are several articles on Medscape about transplant patients and also one or two on IBD patients on Remicade. The articles on IBD patients on Remicade basically say IBD patients MUST get the second shot (the study was done in England where they are giving only one shot to the majority of people. But once they gave the second shot to a small number of IBD patients on Remicade (I think it was like 28 out of 800), they responded well to it.
 
Thanks Maya.

Ugh, S called to tell me he just found out a friend he was with on Saturday had contact with someone who's tested positive. :eek: His friend is being tested today. Just in case, S has booked a test for himself. Really, the timing couldn't be worse. :(
 
Tess, there was actually an article in the NY Times about this. Here's an excerpt:
In one such study, British researchers followed nearly 7,000 people with Crohn’s disease or ulcerative colitis from 90 hospitals in the country. They found that less than half of patients who took Remicade mounted an immune response following coronavirus infection.
In a follow-up, the scientists found that 34 percent of people taking the drug were protected after a single dose of the Pfizer vaccine and only 27 percent after a single dose of the AstraZeneca vaccine. (In Britain, the current practice is to delay second doses to stretch vaccine availability.)
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However, US researchers are not impressed by the UK study because so few patients got second doses of the Pfizer vaccine. Here is an excerpt from that article:

A previous study from Kennedy and colleagues revealed that IBD patients on infliximab showed a weakened COVID-19 antibody response compared with patients on vedolizumab. To determine if treatment with anti-TNF drugs impacted the efficacy of the first shot of these two-dose COVID-19 vaccines, the researchers used data from the CLARITY IBD study to assess 865 infliximab- and 428 vedolizumab-treated participants without evidence of prior SARS-CoV-2 infection who had received uninterrupted biologic therapy since being recruited between Sept. 22 and Dec. 23, 2020.

In the 3-10 weeks after initial vaccination, geometric mean concentrations for SARS-CoV-2 anti-spike protein receptor-binding protein antibodies were lower in patients on infliximab, compared with patients on vedolizumab for both the Pfizer (6.0 U/mL [5.9] versus 28.8 U/mL [5.4], P < .0001) and AstraZeneca (4.7 U/mL [4.9] versus 13.8 U/mL [5.9]; P < .0001) vaccines. The researchers' multivariable models reinforced those findings, with antibody concentrations lower in infliximab-treated patients for both the Pfizer (fold change, 0.29; 95% confidence interval, 0.21-0.40; P < .0001) and AstraZeneca (FC, 0.39; 95% CI, 0.30-0.51; P < .0001) vaccines.

After second doses of the two-dose Pfizer vaccine, 85% of patients on infliximab and 86% of patients on vedolizumab seroconverted (P = .68); similarly high seroconversion rates were seen in patients who had been infected with SARS-CoV-2 prior to receiving either vaccine. Several patient characteristics were associated with lower antibody concentrations regardless of vaccine type: being 60 years or older, use of immunomodulators, having Crohn's disease, and being a smoker. Alternatively, non-White ethnicity was associated with higher antibody concentrations.
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"These data, which require peer review, do not change my opinion on the safety and efficacy of COVID-19 vaccines in patients taking TNF inhibitors such as infliximab as monotherapy for the treatment of psoriatic disease," Joel M. Gelfand MD, director of the psoriasis and phototherapy treatment center at the University of Pennsylvania, Philadelphia, said in an interview.

"First, two peer-reviewed studies found good antibody response in patients on TNF inhibitors receiving COVID-19 vaccines (doi: 10.1136/annrheumdis-2021-220289; 10.1136/annrheumdis-2021-220272). Second, antibody responses were robust in the small cohort that received the second dose of a COVID-19 vaccine. We already know that, for the two messenger RNA-based vaccines available under emergency use authorization in the U.S., a second dose is required for optimal efficacy. Thus, evidence of a reduced antibody response after just one dose is of unclear clinical significance. Third, antibody responses are only a surrogate marker, and a low antibody response doesn't necessarily mean the patient will not be protected by the vaccine."

"Tell me about the response in people who got both doses of a vaccine that you're supposed to get both doses of," Jeffrey Curtis, MD, professor of medicine in the division of clinical immunology and rheumatology at the University of Alabama at Birmingham, said in an interview. "The number of patients in that subset was small [n = 27] but in my opinion that's the most clinically relevant analysis and the one that patients and clinicians want answered."
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"The biological plausibility of being on an anti-TNF affecting your immune reaction to a messenger RNA or even a replication-deficient viral vector vaccine doesn't make sense," David T. Rubin, MD, professor of medicine at the University of Chicago and chair of the National Scientific Advisory Committee of the Crohn's and Colitis Foundation, said in an interview.

"I'm sure immunologists may differ with me on this, but given what we have come to appreciate about these vaccine mechanisms, this finding doesn't make intuitive sense. So we need to make sure that, when this happens, we look to the next studies and try to understand, was there any other confounder that may have resulted in these findings that was not adequately adjusted for or addressed in some other way?
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I will add
There have been numerous studies that show that methotrexate by itself lowers the effectiveness of the flu vaccine
So I would think these vaccines would not differ much from that
 
Some medications are expected to present a slight setback, but aren’t necessarily disastrous for COVID-19 immunization, because they suppress just a sliver of the immune system’s typical operations. One example is ustekinumab (Stelara), a common treatment for Crohn’s disease, which zaps the signals that immune cells send one another—an intervention akin to temporarily putting a military’s radio system on the fritz. Many of these treatments can continue on schedule during vaccination, under the advisement of a physician.


Other drugs, however, are far blunter tools, clobbering large swaths of the immune system. Among them is Rick Phillips’ drug, rituximab (Rituxin), which is used to treat rheumatoid arthritis, multiple sclerosis, lupus, and white-blood-cell cancers such as leukemia and lymphoma. It destroys entire populations of B cells—on par with blitzing a fleet of naval forces. B cells are antibody factories, and without them the immune system has more difficulty committing new viruses to memory. “We’ve pharmacologically made a hole in the immune system,” Erin Longbrake, a neurologist at Yale New Haven Hospital who is studying COVID-19 vaccine responses in multiple-sclerosis patients, told me. After a rituximab infusion, B cells can take six months or more to bounce back.
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From

https://www.google.com/amp/s/amp.theatlantic.com/amp/article/618596/
So Stelara is ok
As are some with anti tnf
No word on mtx or combo
Or other biologics
 
The American College of Rheumatology does have guidelines:

Sulfasalazine; Leflunomide; Mycophenolate; Azathioprine; Cyclophosphamide (oral); TNFi; IL-6R; IL-1; IL-17; IL-12/23; IL-23; Belimumab; oral calcineurin inhibitors; Glucocorticoids, prednisone-equivalent dose ≥ 20mg/day** - No modifications to either immunomodulatory therapy or vaccination timing

Methotrexate - Hold MTX 1 week after each vaccine dose, for those with wellcontrolled disease; no modifications to vaccination timing

JAKi - Hold JAKi for 1 week after each vaccine dose; no modification to vaccination timing
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S's request to have second dose at 21 days was denied. Current eligibility is only if immunotherapy is for cancer patients. Oh well... who knows, once we start getting a larger supply in, maybe eligibiity will open up.

S had his vaccine a week ago today; anyone think he could be having symptoms from vaccine now? He's feeling fatigued and just 'under the weather' and went for a covid test... he's only seen one friend (who's fairly cautious as well) but still... :(
 
Normally you see covid vaccine side effects within the first 24-48 hours
My ibd kiddo got his first shot today
Second one in three weeks
Hopefully you will get more soon there
 
IDK what happened to Canada... somehow we ended up with just the crumbs! :mad: Very sad display of capability from our governments.

Glad he got his shot!! :D
 
Sorry, Tess. I do really think that availability will open up sooner than predicted. Appts were really scarce in my state for the first few months, but it's finally getting easier to make an appt.
 
"IDK what happened to Canada... somehow we ended up with just the crumbs!"

It's because you guys are actually acting responsibly and staying home etc. They are distributing more here because half the country won't pay attention to advice from professionals because it infringes on their freedom.

Off my soapbox now.

What MLP said. side effects are within first 24 hours. Not days. I hope he didn't get Covid. That would stink right after the first shot. But that is what happened to me. Got my first shot and 5 days later positive. So silly.
 
He's negative!! :D So a cold can just be a cold!😁

pdx - yes, things are finally picking up here with vaccines. I'm hoping that they'll pick up enough to bump up 2nd doses but, I'm not holding my breath. Just going to keep warning S and hoping he doesn't consider himself invincible with just one dose. :( Hate always being a 'bummer' with warnings but... I guess that's a mom! lol

CIC - LMAO... maybe we should try that! I have a friend who's been in Florida since December... I'm so jealous when she tells me about her days! lol


But, for the Canadian members... there's a group called Vaccine Hunters... they are amazing and constantly post updates from all vaccine clinics across Canada. It's run by volunteers and they post if a pharmacy has a few open apptmts, if there's a new pop-up clinic, etc. They're on Twitter and probably on FB as well.
 
Tesscorm said:
He's negative!! :D So a cold can just be a cold!😁

pdx - yes, things are finally picking up here with vaccines. I'm hoping that they'll pick up enough to bump up 2nd doses but, I'm not holding my breath. Just going to keep warning S and hoping he doesn't consider himself invincible with just one dose. :( Hate always being a 'bummer' with warnings but... I guess that's a mom! lol
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So glad to hear he's negative! And yes, I am also the "constant warning" mom. My two kids and I just got our first vaccine shots too, and I feel like I'm constantly reminding them to keep being careful. Our case counts in Oregon are going up a lot lately with the new variants...
 
It so difficult to stay ahead of the variants... now there's the new one from India. Seems we've barely got our footing against the UK, S.African and Brazilian variants when this new one is popping up. We have cases in Quebec and BC but, I'm sure it's also in Ontario... just hasn't been tested yet.
 
Tesscorm said:
IDK what happened to Canada... somehow we ended up with just the crumbs! :mad: Very sad display of capability from our governments.
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Here is an interesting article addressing that very question:

https://www.washingtonpost.com/world/2021/04/20/coronavirus-canada-vaccine-united-states/

Quote from the article:

“Canada has reserved access to more than enough doses for its population, striking advance purchase agreements with multiple pharmaceutical companies including Pfizer and Moderna. But it has struggled to get actual vaccines. A key problem is that Canada, unlike the United States, has limited domestic capacity to make coronavirus vaccines. For now it’s relying entirely on deliveries from manufacturers abroad.

A severe global supply crunch, unexpected manufacturing delays, poor communication about the safety of the AstraZeneca vaccine from officials at all levels of government and contracts that put the delivery of most doses in the second and third quarters of this year have hindered the rollout.

Responsibility for administering the doses that Ottawa procures and deciding which groups to prioritize has been left to the provinces. Haphazard drives in some provinces have fueled frustration.”
 
Yes, that's exactly the problem. Years ago, we closed our manufacturing of vaccines (I don't know details) and outsourced. Likely not a bad decision until now! But, now, it was REALLY bad decision. It's understandable that the governments of countries who have manufacturing capabilities are under pressure to take care of their own. Vaccinations seems to be picking up some speed here... hopefully, it continues... (I really hope we can get ahead of the new variant).
 
S had his vaccine a week ago today; anyone think he could be having symptoms from vaccine now? He's feeling fatigued and just 'under the weather' and went for a covid test... he's only seen one friend (who's fairly cautious as well) but still..
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I know S ended up having a cold, but my kiddo had low grade fever (it was like 100.1 F or something like that) and fatigue from the vaccine for 4-5 days from the first shot. She had a very sore arm for two days. As I mentioned before, her IBD and then her arthritis flared and those flares lasted for weeks. The IBD flare caused more bleeding than she's ever had before.

But her experience is far from the norm. Her GI had her delay the second vaccine till her IBD was better controlled. She's having it next week.

In terms of vaccine appts., it was REALLY hard to get one back in February. Now it's relatively easy. I hope the same will happen in Canada. I heard on the news that the US is sending Astra Zeneca vaccine to Canada and Mexico.
 
Maya142 said:
I heard on the news that the US is sending Astra Zeneca vaccine to Canada and Mexico.
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Might as well since we are not using it here. AstraZeneca's attempts to get emergency use authorization from the FDA have been a comedy of errors. When and if they finally get it authorized I think it will largely be too late. They will have missed their market.
 
Tesscorm said:
😟. Wish I cud get S his second dose in U.S.
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Is your son living in the US? If the answer is yes he can get the vaccine. You don't need to be US citizen to get the vaccine. You just need to be a US resident. I know several people of various foreign nationalities who have gotten the shot without any more trouble than anyone else. And the appointments are starting to become easier to get.
 
Thanks @Scipio but, no, he is not living in the U.S. We're not far from the border so, if I knew he could drive over to a clinic and have his second dose, I wouldn't hesitate but... I don't know if I can just call up a pharmacy and book it, I'd need to be sure he was getting the second dose of the same vaccine and I really don't understand these border closures! I keep hearing that the borders are closed but I also hear about people crossing the border all the time???

I also hear that lots of Canadians head down to have vaccines but... I just don't know the logistics (how, why, where, etc.).
 
Not sure if this has already been posted in anyplace else in forum but... it's positive news so worth posting!

https://www.medrxiv.org/content/10.1101/2021.03.17.21253848v1.full
Serological response to COVID-19 vaccination in IBD patients receiving biologics


Objective The impact of medications on COVID-19 vaccine efficacy in IBD patients is unknown, as patients with immunosuppressed states and/or treated with immunosuppressants were excluded from vaccine trials. To address this, we evaluated serological responses to COVID-19 vaccination with the SARS-CoV-2 spike (S) mRNA BNT162b2 (Pfizer-BioNTech) and mRNA-1273 (NIH-Moderna) vaccines in IBD patients enrolled in an ongoing SARS-CoV-2 sero-survey at the Icahn School of Medicine at Mount Sinai in New York City.
Design We obtained sera from 48 patients who had undergone vaccination with one or two vaccine doses. Sera were tested for SARS-CoV-2 anti-RBD total immunoglobulins and IgG (Siemens COV2T and sCOVG assays), anti-Spike IgG (in-house ELISA), and anti-nucleocapsid antibodies (Roche).
Results All IBD patients (15/15) who completed two-dose vaccine schedules achieved seroconversion to high levels. Two IBD patients with history of COVID-19 infections and who were seropositive at baseline seroconverted to high levels after the first dose. Concurrent biologic use was 85% (41/48), including 33% of patients (16) on TNF antagonist monotherapy, 42% (17) on vedolizumab monotherapy, 6% (3) on vedolizumab combination therapy with thiopurine, and 8% (4) ustekinumab; 1 patient was receiving guselkumab for psoriasis. Three patients (6%) were on oral steroids at the time of vaccination.
Conclusion IBD patients receiving biologics can seroconvert with robust serological responses after complete Pfizer-BioNTech and NIH-Moderna COVID-19 vaccination. In IBD-patients with previous SARS-CoV-2 seroconversion, a single dose of either vaccine can induce high index values, mirroring findings from the general population.
 
Not yet. And, of course, they did call today, finally, after constant persistence!, to schedule him for June 10. Unfortunately...

he is scheduled to have a gastroscopy and colonoscopy on June 11. He was also scheduled for his next infusion June 10! Seriously... talk about juggling balls!

He's been having off/on right flank pain for over six months! He had a flare of epididymitis (he's had it before), which can cause flank pain, so he followed it up in that way... of course, doctors aren't seeing anyone 'in person' due to covid, so it's all through phone/zoom. His GP sucks, so thank God for his GI. His GI referred him to a urologist... by that time, the epididymitis had cleared up and urologist did not think it was causing flank pain.

He had 'usual' GI follow-up, S mentioned flank pain, GI's assistant/resident practitioner said his liver numbers were slightly but didn't think it was high enough to cause pain. Kind of left it unresolved.

When pain came back again, S went to emergency, liver numbers still up very slightly... but ER dr said it was so slight, if it wasn't for S mentioning it specifically, it wasn't even high enough to mention.

S went to see GP to ask for hepatologist referral (didn't want to ask GI again). GP said to try to improve his diet, exercise, etc. because number was up so slightly, he didn't feel it warranted referral yet. S did as suggested, next blood test, liver numbers were trending in the right direction.

Pain kept coming back, sometimes laying down, sometimes bending over, sometimes constant ache, sometimes gone... no other symptoms at all (no weight loss, nausea, diarrhea, constipation, urine normal, no jaundice, no fatigue, same appetite, etc.).

S went to emergency again... did ultrasound, didn't see anything. ER dr said it could be an ulcer and gave him meds for 10 days. Told him to call GI if it didn't go away because it could also be crohns. S took meds, helped but pain has come back. Also, there's a bit of a 'bump'. It's not a lump, and it's not a defined 'shape', it's more like a small area is a bit swollen. But, really, it's so slight, you'd never see it if you weren't closely looking for it. - but S says its exactly where it hurts... at the right side (if you took a straight line down from armpit, just slightly to the front, below ribs).

So, now GI has scheduled gastro- and colonoscopies for June 11 and a CT scan on June 24.

Back to scheduling... I've told S to push out his remicade from June 10 to approx. June 14-16 (I don't want the infusion to reduce any inflammation the day before scope). But, now, they've called re the second dose (wow, the timing couldn't be worse!) for June 10 as well. S doesn't want it on the 10th because he said if he develops a fever from the second dose, they'll probably cancel the scopes. Plus his GI had once said to try to schedule his vaccine and remicade 10 days apart... :rolleyes:

He's sent an email to his GI about this scheduling tonight, hopefully, we'll hear back by tomorrow and can figure it out... S is saying to just reschedule second dose for the week of June 28??

Sorry, Maya... you asked such a simple question! o_O
 
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Oh, and S and I have run out of ideas as to the pain... he no longer thinks it's his liver...

- because it started at the same time as his epididymitis, he's back to thinking it's related and could be kidney issues?
- how about something with the gallbladder?
- lumbar hernia?

I really have no idea...
 
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Sorry to hear all this. L received his first shot 4 days after his infusion. I tried to have him move his shot to later but he didn't want to. He did call his GI before his infusion and vaccine about the timing and his GI said it was perfectly fine. I have read nothing about having to time the infusions and vaccines.

I hope S is able to get to the bottom of all this.
 
Hi Jo,

I agree, I'm not so worried about timing the infusion and vaccine. I imagine the logic is that the biologic, at it's strongest (ie after infusion), may reduce your immune response to the vaccine. But, I doubt there's any study showing this, so probably just a suggestion 'if you can'...

I don't think the vaccine would have any impact on the scopes but I think S made a good point in that he may react with a fever, etc. and that may cause them to cancel the scope?? I guess we'll see what GI says..

Frustrating because I've sent so many emails, made so many phone calls to try to get him his second dose and this is how the timing worked out! Wasn't it complicated enough?!? lol
 
So reasons not to get the shot the day before
Fevers
Fatigue /flu like symptoms
And rashes
It taxes the body
Anesthesia for scopes tax the body as well
Better to wait
Can the hospital give it post scope ?

It can enlarge lymph nodes anywhere in the body so could alter MRE findings
They recommend women wait 6 weeks after second shot for mammograms since it can cause false findings
 
Thanks MLP! I wasn't aware of all that!

GI replied today that he's ok with proceeding with remi day before scope... might be a bit miserable to go thru infusion during prep tho?? May still try to reschedule til right after scope. He did suggest rescheduling vaccines to 5-7 days after infusion.

S didn't mention CT date in his email so GI didn't mention anything about that... I'm going with your advice, MLP... I'll reschedule his vaccine until after CT. S does get stressed with worries about possible diagnoses, so the last thing we need is a false positive because a lymph is enlarged! He's waited this long for his second dose, waiting an extra week is ok...
 
I agree with MLP's advice - I would do the vaccine after imaging because it can cause fever and enlarge lymph nodes and that could cancel either the scope or the CT and affect the results.

As for Remicade, we weren't told to time the vaccine so that it was between doses of Cimzia (M has it every two weeks, so to do it after 1 week for example). We were told to stop MTX and JAK inhibitors, but nothing about anti-TNFs. But I do agree with your rationale - if possible, I'd try to do the vaccine in the middle of an infusion cycle.

As for Remicade right before the scope, I think my biggest concern would be that he'd have to go to the bathroom all through the infusion - that won't be fun.

As for the flank pain, did they see kidney stones by any chance? That's all I can think of...
 
He was able to move his remi to today... I would've preferred after scope but he would've had to wait a week before there was availability. If GI wasn't worried about remi having an impact on scope results then I won't either. :)

S said he thinks they did check his kidney on the ultrasound but he's not sure anymore. When he was having epididymitis symptoms, we did consider kidney stones but, with the limitations of face-to-face dr apptmts, the pain was gone by the time he had urologist apptmt. Perhaps he have passed it?? IDK how it works but, possibly there can be residual stones still causing pain?? Hopefully, scopes and CT will give an explanation.
 
Ct should “see” the kidneys as part of the Gi tract
If the stone is “bobbing” up and down in the kidney it can cause intermittent pain when it blocks the “plumbing “ then moves again
Either way the ct will show the kidneys so he will know soon
 
He could have had multiple stones...M once had an abdominal CT and it showed that she had 3 tiny kidney stones. Thankfully hers were so tiny that they never caused symptoms and I guess she passed them at some point because she had lots of imaging last summer and they did not show up.

Just wondering - why are they doing a CT and not an MRE? Is it a CTE?
 
I wonder if passing stones could feel like epipidymitis? S may have jumped to the conclusion that it was epipidymitis because he had it before??

Unfortunately, between covid restrictions and his age, my access to his medical has been limited... I wish I'd been with him at ER... I would know if they had seen his kidney. However, I would think if he was indicating pain in that area, the ER ultrasound would have looked at that??

I don't know why CT instead of MRE. I questioned that right away as well but I wasn't in the phone appointment when S and GI scheduled it. And don't know if it's CTE. :(
 
I guess this was the thread where I was posting re S's scope/CT (has certainly drifted from the title! )... anyway, I don't have the actual results (waiting for S to get copies) but, so far, nothing is showing on any of the tests - scope, biopsy, CT. So, again, as has happened before with S, no real answer as to cause of pain. Pain has been much better but, in the last week, has seemed to be increasing a bit again. GI scheduled a follow up in six months.

Technician assured S that the CT would show if anything was 'off' anywhere in the overall area (not sure what exactly the 'area' is but S said she mentioned liver, intestines...).

For sure, the clear results relieve S and me of worry that this could be something serious but still frustrating for S again. Has happened so many times where something is wrong but there's no answer. IDK??? But, as long as it's not serious, hopefully, it'll just eventually go away.

(I've told S to follow up with his GP again..., see if he has any other ideas. When I actually see the results, I'll post if there's anything at all that's noted.)
 

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