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Does anyone know if 10mg prednisone is still immunocompromising?

Hi!
I went on prednisone about a month ago and got sick, seems like some virus. I wasn't feeling horrible but have gotten worse, now am tapering off prednisone but still have fevers around 99. I did get an infusion of Stelara on 12/09/20 (first infusion) and the GI says she has never had anyone react like this, but I'm wondering if the Stelara could be a factor as well. I am down to 10mg of prednisone and have about 10 days before I am off completely. I feel very sick. Has anyone had an experience like this? I ended up in the ER and they did a CT scan of my sinuses, but no sinusitis as far as they could see. Seems like a virus. I have a lot of pain and congestion in the face and some in the lungs which is getting better. The fevers have me concerned. I'm hoping it is all the prednisone as the Stelara seems to be helping the gut. Thank you!
 

Jennifer

Adminstrator
Staff member
Location
SLO
Both Stelara and Prednisone can lower your immune system as well as Crohn's itself. Many people become more ill when weaning off the steroid but with a possible virus I'm gonna bet it's the Stelara. You'll find out for sure if you start getting sick more often and for longer. If it's not a virus then you could request a slower taper on the steroid just in case. Hope you feel better and keep us posted.
 
Both Stelara and Prednisone can lower your immune system as well as Crohn's itself. Many people become more ill when weaning off the steroid but with a possible virus I'm gonna bet it's the Stelara. You'll find out for sure if you start getting sick more often and for longer. If it's not a virus then you could request a slower taper on the steroid just in case. Hope you feel better and keep us posted.
OK, thank you for the help. Why was it important to request the slower taper from the prednisone if it's not a virus? Does that mean the body is still able to fight bacteria off equally as well with or without steroid? Thanks!
 

Jennifer

Adminstrator
Staff member
Location
SLO
Because many people start feeling ill while weaning off the steroid. Their symptoms tend to come back and they have a general unwell feeling. You're not on a high dose of the steroid so it wouldn't affect your immune system as much as if you were taking 60mg but it still affects it. By the sound of how sick you are it still sounds like the Stelara because it lowers your immune system and your ability to fight infections so you may feel worse and for longer along with getting sick more often. It's very common with biologic medications.
 

my little penguin

Moderator
Staff member
I would talk your Gi
When Ds was seeing an infectious disease specialist
We were told Stelara was not a concern
Only biologics like humira and remicade
Since the infection rate is higher with remicade /humira vs Stelara
Given how they affect different pathways in the immune system
 

Jennifer

Adminstrator
Staff member
Location
SLO

This link talks about the differences between Humira and Stelara as far as how they work and what their possible side effects are. Both affect the immune system yet even if they affect it differently you can still experience an increase of various infections.

Here's a list of the possible side effects of Stelara. All of your symptoms are listed including fever.


It is good to talk to your GI every time you get sick so they can help you decide if the medication is right for you.
 
Thank you both very much! I am slowly improving in symptoms. I talked to my GI last week and she does not know what to say. She does say that I am immunocompromised on two fronts, Stelara and prednisone. She has not had anyone react this way on the Stelara though, so she is not sure what is happening. I guess I will have to wait until the prednisone is gone from my system and see how long this lingers or if it disappears beforehand. One thing is for sure, it is due to a med or meds. I never get this sick. I'm worried about another Stelara injection in six weeks. I will have to discuss with the GI. I work in a school! An elementary school.
 

Lady Organic

Moderator
Staff member
Did they test you for covid at the hospital?
Did you received your first Stelara shot while being sick with fever? If I remember correct, the instructions are to wait and postpone our shots when we have an infection, especially fever. There should be a info help line/center in your country for Stelara users you can register to. I am on Humira in Canada and I have a very good customer service with nurses specialized in our specific medecine we can call and get important information like this.
this is the support program for Stelara in canada, they probably have similar service I get with Abbvie care (humira):
 
Do you know if that number is something I can use in the US? I have an insurance provider with nurses but they don't really know much, they more just ask questions. I was sick with the first Stelara shot but don't think I had a fever. I didn't feel hot at the time. I remember feeling an increase in temp and hot over the next week, including body aches, then had a fever of 100.7 when checked at dr office nine days later. I have also been tapering off prednisone though and GI says prednisone can mask an infection. I have had low grade fevers since but it is getting better. I did get COVID tested and flu but negative. GI sent me to ER where I had a CT scan but no apparent sinusitis. ER doc thought I should take antibiotics anyway. I've had other opinions since and they are back and forth, half say take antibiotics, half say not including ENT. Of course I don't want to take them with gut issues going on. I have been holding off but am suffering a great deal. Lungs and sinus irritation with fluid getting trapped in sinuses when I use Neti Pot, but need to keep them flushed. Feeling bad, could not go to work right now.
 
Do you know if that number is something I can use in the US? I have an insurance provider with nurses but they don't really know much, they more just ask questions. I was sick with the first Stelara shot but don't think I had a fever. I didn't feel hot at the time. I remember feeling an increase in temp and hot over the next week, including body aches, then had a fever of 100.7 when checked at dr office nine days later. I have also been tapering off prednisone though and GI says prednisone can mask an infection. I have had low grade fevers since but it is getting better. I did get COVID tested and flu but negative. GI sent me to ER where I had a CT scan but no apparent sinusitis. ER doc thought I should take antibiotics anyway. I've had other opinions since and they are back and forth, half say take antibiotics, half say not including ENT. Of course I don't want to take them with gut issues going on. I have been holding off but am suffering a great deal. Lungs and sinus irritation with fluid getting trapped in sinuses when I use Neti Pot, but need to keep them flushed. Feeling bad, could not go to work right now.
 

my little penguin

Moderator
Staff member
Does your doc (Gi and ENT) know your using a neti pot regularly ??
What type of water are you using in it ??
The number listed for Jansen is for the US .
Have you seen pulmonologist since you have lung issues ?
Crohns can have extra intestinal manifestations in the lungs.
 
Yes, the ENT doc told me to use it. However, he does not want to see me as he thinks the whole issue is too complex for him. He is referring me out but the other hospital is 2 hours away and probably cannot get me in soon. I couldn't make the trip anyway, too sick. I tried not using neti but get clotted stuff coming out.
I just started boiling my water for it and straining it. So much work while I am sick.
Oh good about the number. I have been sick since mid November.
They took a lung xray at ER and no problems apparent.
They are also not sure now if I have Crohns or UC since the sigmoidoscopy.
I wonder if the prednisone is keeping the sinuses drained. I have a wee bit of topical gentamicin, I am getting more tomorrow. Every time I use I feel a bit of relief, makes me wonder. It's a liquid antibiotic, putting it in with a dropper. Getting more of the regular strength soon.
 

Lady Organic

Moderator
Staff member
here is for the USA:
in 2017, prior to Humira I had a 3-4 month chronic sinus infection first time ever, it was very painful on one side of my face, that was a very difficult time, I understand you! I took the antibiotics at one point, but I dont recall if they helped or not unfortunately. I think they didnt help and that the infection just went away gradually. I was using the Neil irrigating system along with other decongestant and nasal spray corticoid. Purified water must be bought in bottles at the pharmacy ideally.
 

my little penguin

Moderator
Staff member
Right - look in the baby section of Walmart or target
There is gallons of “nursery” water )at least they used to carry it years ago to make baby bottles of formula
Purified is needed


Not tap water
Not the fluoride version
 
here is for the USA:
in 2017, prior to Humira I had a 3-4 month chronic sinus infection first time ever, it was very painful on one side of my face, that was a very difficult time, I understand you! I took the antibiotics at one point, but I dont recall if they helped or not unfortunately. I think they didnt help and that the infection just went away gradually. I was using the Neil irrigating system along with other decongestant and nasal spray corticoid. Purified water must be bought in bottles at the pharmacy ideally.
Great, thanks, I'll call the number! Thanks for sharing about the sinus infection, that makes me feel less alone. Thanks for tip about pharmacy water. Only problem is I use about a quart 2x day. Have for years to keep infections away.
 
Right - look in the baby section of Walmart or target
There is gallons of “nursery” water )at least they used to carry it years ago to make baby bottles of formula
Purified is needed


Not tap water
Not the fluoride version
Thanks so much. I need a lot of the water....about 3 cups 2x/day.
Great, thanks, I'll call the number! Thanks for sharing about the sinus infection, that makes me feel less alone. Thanks for tip about pharmacy water. Only problem is I use about a quart 2x day. Have for years to keep infections away.
Sorry, 3 cups 2x/day for water
 

Lady Organic

Moderator
Staff member
Yes purified or demineralized water, thats what I am using when needed. Its not expensive. I was using the extra strength salt sachets by NeilMeds in the pot. Really bend your head in the sink when you do the procedure and go very gently when blowing your nose, this will help for the irritation.
My sinus infection lasted so long I was then afraid I would have reccurent sinus infection after any time I would catch a cold, but no, it never happened afterwards.
What I do now is that I clean my nose with spray saline water daily (Gentle stream spray is important, ENT recommendation) and I only do the nasal irrigation system when I start a cold, to prevent the sinus complications.
So yes, hang on, this can be a long and hard process, but eventually, it will go away, hopefully soon.
 
Yes purified or demineralized water, thats what I am using when needed. Its not expensive. I was using the extra strength salt sachets by NeilMeds in the pot. Really bend your head in the sink when you do the procedure and go very gently when blowing your nose, this will help for the irritation.
My sinus infection lasted so long I was then afraid I would have reccurent sinus infection after any time I would catch a cold, but no, it never happened afterwards.
What I do now is that I clean my nose with spray saline water daily (Gentle stream spray is important, ENT recommendation) and I only do the nasal irrigation system when I start a cold, to prevent the sinus complications.
So yes, hang on, this can be a long and hard process, but eventually, it will go away, hopefully soon.
Thanks very much. Do you remember if you had low grade fevers with it?
 

my little penguin

Moderator
Staff member
Is your crohns flaring ?
I ask since crohns inflammation/arthritis inflammation in my kiddo can cause low grade fevers as well
So if Ds is not under control for his arthritis or crohns he will get low grade fevers until the inflammation is under control
Muddies the waters a bit
 
Yes, the Crohn's (or UC) is still flaring. I went into a major flare in November and just got Stelara on Dec. 9th. I didn't feel feverish until after the Stelara, but GI said prednisone can mask a fever. Am tapering prednisone.
 
Happy New Year!
Listen, I may be coming to the agonizing conclusion that I need the oral antibiotic. The ER doc prescribed Augentin and the PCP prescribed Doxycycline. I think I will start with the Augemtin although I know it's a broad spectrum deal. What do you all think? I've been sick since mid November. I am taking the topical antibiotic and it is helping to a certain point but I'm not sure it's going to fix anything. I can't even drive or shop for myself. We start work again next week. The ENT did a culture that came back with no abnormal bacteria but I was taking some topical antibiotic at the time. The CT scan was also negative. Dr's are saying there is probably still some infection of a bacterial nature in there, but not all are saying that. I have inflammation and I don't think it's totally the Stelara because I had fevers and it is getting a bit better, but extremely slowly. I've got headaches and inflammation. I've been sleeping a lot at night. I could try the topical (gentamicin) for a few more days but I've just had it. I'm still in a flare and just started Stelara on 12/09, still bleeding some and pooping 2 times a day. What do you all think?
 
It looks like you have been having quite the series of challenges this year.

People who have never lived thru a full blown sinus infection have no idea how impactfull they can be
I hadn't has one for about ten years, but got one for christmas
It's been mostly mild compared to the past, but damn, does it mess with the nighttime, and leave you groggy and out out of it during the day

... sucks...

I have always tried to get ahead of them by doing many of things that you are already doing.


My go to is a hot water bottle laid across the affected area,
... and then a single sudafed (the real ones, pseudephedrine HCI 30mg) that are kept behind the counter at the pharamacy (no script required)
recomeneded dose is two tablets, but one is usually enough

Sit upright, and give it time to work, and most nights, it'll knock it back enough I canget some sleep

Use your netti pott, they can be magic
... but understand you must be very carefull to not introduce any bacteria/pathegens or other allergens
(the advice on "nursery water" by "my little penguin, and the follow up from "Lady Organic" were spot on!)

Use it when you needit, but try and give the system some time inbetween to recover naturally



One thing that is kinda crazy but kept me from having allergies, and really minimized my sinus troubles was "five mile honey"
That's honey that is collected in your very local area, and it will contain everything that's in your local pollen groups.
My wife just puts it on one of my toast slices at breakfast every day

In the diluted form collected by happy little bees, it will condition your system to recognise the local pollens and allergens and it kind of :mutes" your immune system response. Try it, you might just have the same luck that i (and many others!) have had with this particular approach
I also run a hepa air purifier in my bedroom to cut down on the airborne irritants


I am also on Stelera, and I have been very impressed by the Jannsen pharmacuetical group's response to my questions and concerns.
They have an excellent nurse navigator system, and if you sign up for their programs, they will absolutley exceed any expectation you could ever have about product support. Truly incredible folks!


One last thing, (and I don't want to sound negative), but you've got to slow down a bit, boss.

Every single drug we take has side effects, and some of them can be very impactfull

Your health care team sound like they are on it and trying to help, but you can help them by slowing down and defining some priorities.
Antibiotics and steroids are very powerfull tools
... almost too powerfull at times

Overuse of antibiotics can (and often will) cause gi problems, and in many cases they can cause the system to flare, and make those flares hit harder and last longer as the symbiotic happy little guys doing work in the digestive system can really get nuked by the action of many antibiotics
There's a time and aplace for them, but it is a VERY good idea to discuss their use with your gi team

It's a bit of the same thing with the steroid therapies
There's a time and a place for them, have no doubt!
But mixing different types can cause all kind of problems, especially if care team is not kept informed.

ER folks only see one data point (you, that instant), and they *may* mistake that one data point as being the whole picture
your care team sees the big picture, they see many data point as you cycle thru your many appointmments, and they will become familiar with you, your particular climical presentation, and how you want to approach things.

always consult them before making any drastic changes to your medication list or dosages

You got this man,

it's just gonna suck ebery now and then

Get outside on the warm days,
keep moving

Both my grandparents used to say;

... when you're going thru hell ... keep moving ...

You got this!
 
T-Bone,
Thank you so much for your reply. I haven't gotten back to you because I'm still trying to heal my body and like you said, slow down. Unfortunately I have gotten so worked up I haven't been able to come down. I've been horrified and all by myself. I've been home waiting for the IBD to calm down so I can get off the steroids. I was almost off and it came back. I don't take the steroids well and I get really nervous and upset. I keep thinking I'm fragile physically as I was getting fevers. So, I've not wanted anything irritating my system and creating any anxiety, and steroids do. So I'm trying to handle the steroid effect but not doing well. I can't seem to calm down even to meditate, and I'm worried about being on them for this long. I really appreciate all the time and energy you put into you replies and I do cherish your words. I really wanted you to know this and I have been reflecting on your reply since you wrote it. Thanks again!
 
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