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Ever had hot flashes from Remicade?

Mountaingem

Mountaingem

It's so strange-I've been having hot flashes and night sweats for the past six months. After extensive testing from my Ob/gyn, Rheumatologist and Endocrinologist every thing is normal (for once!). No early menopause, no thyroid, everything fine.

But I continue having hot flashes, especially the week following an infusion. The Endo put me on Effexor to control hot flashes which has helped a little, and definitely put me in a better frame of mind, but hasn't stopped completely...

Anyone else go through this? Could it be the Remicade? Ideas as to what this might be?

FYI: I'm also on Pentasa, Methotrexe, Atenolol, Hydrochlorothiazide, Singulaire, and Benadryl.

Thanks guys for reading!:thumright:
 
David

David

Co-Founder
Location
Naples, Florida
I'm sorry you're having trouble Jeannette, that must be really frustrating. I'm no help but free bump to draw attention to your thread so hopefully others might have some insight.

*hugs* to you.
 
Crohn's Mom

Crohn's Mom

Moderator
Awe I'm sorry too - I have no advice but I am so sorry you're experiencing this. Do they think it could be a "strange" mild-allergic reaction?
I hope you figure it out soon ;)
 
K

kllyeve

Only at infusion number 4 and I am dealing with girl hormonal issues so I can't say the Remicade is contributing to this or not.

Wish I could be of more help.
 
SarahAnne

SarahAnne

Jeannette, I just started having night sweats and hot flashes again, I had to change my clothes twice last night! It's almost like I'm on pred again...

Honestly don't know if it is the Remicade. I am in the middle of my 8 week cycle, I know that reactions can happen any time but I hesitate to think it is the Remicade. It seems like I would have started having the issues shortly after the infusion. But, hey, I'm no doctor.

I did just start taking vitamins more regularly, does anyone know if B12 or Vit. D can cause sweating? Maybe it's just getting too hot here and I need to turn down the AC.

Hope you find a solution.
 
David

David

Co-Founder
Location
Naples, Florida
I haven't heard of B12 or Vitamin D causing sweating SarahAnne, that doesn't mean it's not possible of course. I notice when I take my B Complex I get a burst of energy and sometimes feel warm though. And I pee bright green :D
 
Mountaingem

Mountaingem

It doesn't seem to matter if I take the vitamins or not, it happens the first week after the infusion-so frustrating! And on top of it I have a rash on my scalp and down my neck-not sure if it's a heat rash or what. Derm can't fit me in til May 24-after my next infusion! Grrrrr....
 
Clash

Clash

My son just had his first treatment and he complained of hot flashes that night and the next day. IBD nurse said it would probably subside a few treatments in...he is also on pred, just started tapering from 40mg I can't help but wonder if his pred taper is playing a role.
I really hope you get some answers and are able to get past the hot flashes.
 
V

vm7999

I have been on remicade infusions for over two years and don't have hot flashes from these infusions. I have however had this during the times I have been on steroids of any kind. Hope this helps
 
Lisa

Lisa

Adminstrator
Staff member
Location
New York, USA
The only 'hot flash' I have had was the day after my last infusion - was sitting at my desk at work and all of a suddent my face flushed and I didn't feel right - turns out it was my blood pressure rising to a dangerous level (I posted in another thread).....
 
Biek

Biek

Get off Effexor whatever you do! My dad has been dependent on that drug for the last several years. It is one of the hardest drugs to come off of. Read up on it and effexor withdrawal I'm telling ya. The hot flashes are nothing compared to what you will experience. Horrible drug to be on and your Dr should know better.
 
Mountaingem

Mountaingem

Thank you Biek. I have read up on it and I'm in the process of getting off of it. So sorry your Dad suffered; I wish him the best and hope he is better now.
 
tots

tots

Location
Austin, Texas
Mountaingem-
Please remember everyone reacts diff to drugs. I am sure you talked to your Dr before you statred to get off the drug. I personally couldnt take it. My mom responds well. I dare say if we all read the side affects of all our meds we would be filled with fear daily!

I am afraid to tell many people I am going to try Remicade- I have enough fear and dont want any horror stories- just honest experiences!! I know some will be negative. But so will letting my disease get me further in trouble.

I hope your hot flashes go away! How have you done otherwise with the Remicade?


Lauren
:hippy:
 
Mountaingem

Mountaingem

Awesome-prior to Remicade I had fistulas, abdominal abcesses, and AS. On Remicade I went into remission after 3rd dose, stayed there a year, and at that the flare I had was mild. Totally worth it. Just be sure to take probiotics because it kills off alot of good bacteria, which led to a bout with c.difficile. Regularly taking Florastor will protect against it.
I hope you have good results too! :)
 
Bamafan94

Bamafan94

Location
Alabama
I have taken two infusions of Remicade and have two more to go trying to get my Crohn's back into remission. I have taken Remicade before, but it's been several years ago. I am having horrible hot flashes with it this time to the point that sometimes I feel like I'm going to pass out. I also get a head rush anytime I stand up from a kneeling or squatting position. I don't remember any of these side effects from my previous experience with Remicade. Does that help anyone or does anyone have any similar experiences?
Thanks!
 
David

David

Co-Founder
Location
Naples, Florida
Bamafan, that you had Remicade in the past and then stopped and now are taking it again and getting side effects makes me wonder if you have developed antibodies to it. DEFINITELY mention your side effects to your doctor if you haven't. They may want to test you for antibodies.

Welcome to the community by the way. If you'd like to introduce yourself in our, "Your Story" forum, we'd love to properly welcome you and get to know you better.
 
Mountaingem

Mountaingem

Bamafan, are you taking Methotrexate with the Remicade? My doctor uses it to prevent the antibodies from forming. I was on it for 2 years, then off for 6 months and have gone back to it without problems.

Also are you mainly experiencing these symptoms around the infusion? What you describle to me sounds like they may be infusing too fast-I had those same symptoms and when my GI had they slow down the rate it went away.

Keep us posted :)
 
Bamafan94

Bamafan94

Location
Alabama
David,
I haven't talked to my doctor about antibodies, but I defineatly will. I took Remicade 12 years ago. Then again 6 years ago. And I'm on it again for now.
Thank you so much for your advice.
I will be introducing myself in the "My Story Forum" soon. I just haven't had a chance yet.
Again, thanks for the advice!




Mountaingem,
Thank you so much for your advice. I've never been given Methotrexate. I take 150mg of Imuran a day and 2.4gr of Lialda a day. I actually start having symptoms a few days to a week after an infusion. The hot flashes have calmed down a bit, but I still get the head rush feeling whenever I stand up.
When they give me the Remicade infusion, they start it slow, then speed it up as it goes in. They always give me a shot of steroid and a shot of Benedryl before they even start the Remicade. So those two make me want to run and sleep at the same time! Sleep usually wins out.
Again, I appriciate the advice!

Bamafan94
 
M

Marge

Yes, I have hot flashes after my infusion for about 3 days. Night sweats are worse than day hot flashes. I just put this together recently, since I have been through menopause I thought I was just having hormonal fluctuations. But I really have a spike after Remicade otherwise they are rare. Dress in layers, sleep with it cooler, etc.:)
 
S

SoOoO CoNfuSeD

wow almost relieved to actually find results when i searched "hot flashes" and "remicade"... i've only had one infusion, my first which was 5 days ago and i have been getting these weird hot flashes. I'm 27, so never been through menopause, and had no idea how else to describe it... i'm sorry you're all going through this. I'm really watching my body's every difference since i began the treatment, but this was something i experienced for the first time in my life the day after my treatment. Hadn't expected it. Hope it's temporary, or that the benefits outweigh the brief uncomfort. Know that you're not alone having that kind of reaction.
 
bobf

bobf

yes, I am relieved as well regarding hot flashes/flushes. Sorry to hear about everyone elses misery. I have been on remicade for 2 years now and I have suddenly not only developed hot flashes and bloating but breathing difficulties. Nurses and doctors seem stumped. My doctor put me on xanax twice a day trying to minimize the hell.
doesn't seem to work much tho. Anyone experiencing breathing difficulties when bloated?
 
David

David

Co-Founder
Location
Naples, Florida
Welcome to the forum bob. Breathing difficulties after Remicade is certainly concerning. Have they tested you to evaluate if you have developed antibodies to the Remicade?
 
bobf

bobf

thanks for the welcome. glad to be here finally...going to the dr tomorrow and was looking for some other questions to ask him. He doesnt seem to have as many answers as this forum, but he will consider suggestions. Will let u know what he wants to try.
 
M

Marge

Hi So Confused and bobf, I have definitely correlated hot flashes with Remicade. They are worse the first 2 days then dwindle in frequency through the next few days. I have been on it since 2009 and just put it together after reading the forum. For me it is definitely worth it because Remicade keeps me healthier than any medication or surgery I have been through. Mine are worse at night so I just turn down the thermostat and use light cover or none. During the day I drink cold drinks not hot tea, etc. Hang in there So Confused, try not to over think every little thing. Bob, I have had what I thought was a partial blockage the past 2 infusion, they resolved overnight. I thought I just didn't chew up my food. Do others have bloating? Breathing difficulties should never be taken lightly.
 
bobf

bobf

Hi everyone, my wife signed me up to try and get answers for me regarding hot flashes and breathing problems. After reading some posts it got me thinking, I started getting my infusions at one clinic and it took close to 3 1/2 hrs start to finish. I switched clinics shortly after surgery and it now only takes a little more than 2 1/2 hrs for the infusion. I never got hot flashes until I switched clinics, my next infusion I'm going to request that they slow the drip. If this helps I'll be sure to let everyone know. My hot flashes come and go the full 8 weeks between infusions. Thanks everyone, hopefully I figured one prob. out.
 
bobf

bobf

Went to the Docs and he thought that I might be creating a cycle of panic attacks about the breathing difficulties when bloated, creating more difficulties. He said my chest xrays are the same as they have for the last 8 years. He prescribed zoloft for a month and I took one last night. I am a little lathargic today so I hunkered down for the day. So I will see what happens with both zoloft and slowing the drip. It does help to talk outloud.
 
M

Marge

I hope the zoloft helps! What about the bloating? Did the doc say what that might be? Or if other patients have had that symptom? Another interesting commonality with your expereince is that a few months ago the IBD infusions were moved from the hospital to an outpatient clinic that did only RA patients in the past. This nurse seems faster with infusion than the hospital and never has me wait for 15 minutes afterwards like the hospital clinic.
 
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pipmom

pipmom

Yes. My daughter is small framed and has always been cold natured until Remicade. She gets really warm at night and doesn't like to wear a coat this winter which worries me sick. I think it really messes with the thyroid and or hormone levels.
 
pipmom

pipmom

My daughter has suffered severe anxiety and panic attacks due to the enormity of pain and complete change of her lifestyle due to this horrible disease.The anxiety drives the pain which exacerbates other symptoms as described by the fellow who is having trouble with his infusions. A pain management Dr. has helped us by recommending an antidepressant(Celexa) instead of depending on pain meds.
 
bobf

bobf

Hi Marge, The doc thinks I'm dealing with multiple issues. Which usually seems to be the norm with me. Both the bloating and hot flashes affect my breathing in diff. ways. All of which he thinks is connected to the remacade. Because it's been going on for a few years, everywhere I went I was thinking about keeping my breathing under control. So my brain got programmed to that. No worse feeling than being in the back of a store, have a hot flash, breathing gets difficult and you start to wonder if your going to make it out of the store. The more it happens the more it creates panic. And so the cycle starts. Anyway, the first thing he did was put me on the lowest dose possible of xanax. It did help some but not completely. So slowing the drip hopefully will stop the hot flashes and maybe help the bloating. The zoloft is suppose to help in a sense reprogram my brain to do things without thinking about my breathing. If this doesn't work after 30 days he wants to suspend my remacade for a short time and then either start over or go to plan B.
 
bobf

bobf

David said:
What's your feeling on his diagnosis of panic attacks?
Click to expand...
I agree, the more it happens the more you think about it, and vice versa. But the main thing is a control issue. For instance, say I'm at home and I have a hot flash and my breathing gets a little difficult. I'm in control of what I need to do to get thru it. But if I'm out and about, I may not completely have that control which creates a little panic. So the more it happens the more panicky you get.
 
M

Marge

I have night sweats, then I freeze, then I sweat, etc. I am cold natured but never dress too heavily or in something that can't be removed in seconds. For example, I wear fleece vests often instead of a sweater. If I wear a sweater it has to be extremely cold or again one that can be layered- a wrap sweater. I think your weather is much like NC so unless she is standing outside I would not worry. I often leave my coat in the car when I go in a store or someone's home.
 
Tesscorm

Tesscorm

Moderator
Staff member
Mountaingem said:
Awesome-prior to Remicade I had fistulas, abdominal abscesses, and AS. On Remicade I went into remission after 3rd dose, stayed there a year, and at that the flare I had was mild. Totally worth it. Just be sure to take probiotics because it kills off alot of good bacteria, which led to a bout with c.difficile. Regularly taking Florastor will protect against it.
I hope you have good results too! :)
Click to expand...
Are you referring to remicade killing off the good bacteria? My son will be starting remicade soon and this is the first time I've heard of a connection between remicade and bacteria... just wondering if I should start him on probiotics now???
 
L

LittleSarahRae

I have been taking various biolgics for about 5 years including remicade, humira, cimzia, etc. I always have hot flashes and night sweats. The only medication I am normally on is my birth control pill which I was on for 10 years before being on these medications and never had an issue. The hot flashes and night sweats actually get worse on prednisone.

I believe it is called "purging".
 
T

TammyPastor

I have been on Remicade for several months now. I went from getting surgery every 2 years to now having very few Crohn's issues. The draw back is my monthly cycle is non existing, sex drive gone, hot flashes that cause migraines, energy level is very low, I am sick at the beginning of each infusion. I am tired of going in public and being embarrassed because they think I am going to drop on the floor due to red appearance. Since infusion started my low blood pressure is now high, I stay dehydrated all the time and havesome of the strangest female issues now. Can anyone relate to the multitude of issues I'm dealing with!
 
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