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Posted 5/26/2022 4:49 AM (GMT 0)
What illness have you contracted while on biologics?
Posted 5/26/2022 8:15 AM (GMT 0)
Is this really a good question for you to be asking? You have already spoken about your anxiety issues and the effect this was having on you. This is another cycle of you looking for reassurance and feeding the anxiety cycle. Coming on here looking for info like this you are only going to be hearing bad stuff because forums like this are heavily biased towards membership from people who are having issues with their condition.

Trust your doctor and if you have side effects speak to him. I mean this sincerely.
Posted 5/26/2022 10:06 AM (GMT 0)
Other than getting a toenail fungus from the place I get pedicures that was easily taken care of with meds, I think I have only had 1 bad cold in the last 5 years or so. I don't think people on biologics get any more illnesses than others.

I agree with Damo -- seems like you are looking for things to be anxious about. Why do that to yourself?
Posted 5/26/2022 10:34 AM (GMT 0)

damo123 said...
Is this really a good question for you to be asking? You have already spoken about your anxiety issues and the effect this was having on you. This is another cycle of you looking for reassurance and feeding the anxiety cycle. Coming on here looking for info like this you are only going to be hearing bad stuff because forums like this are heavily biased towards membership from people who are having issues with their condition.

Trust your doctor and if you have side effects speak to him. I mean this sincerely.


You’re partly correct. It is my anxiety again. I doubt I’ll ever change that. I’ve been like it my entire life. This illness has only made it worse and tbh I don’t see a way of ever being any different. I’m scared to die. There is no cure for that. The reason I asked the question is because I had my injection on Tuesday. My grandkids visited on the weekend. One of them wasn’t well. I obviously caught whatever they had. At first I thought I was tired from the injection but now I’ve realised I caught whatever they had so I’m just wondering how ppl handle the flu or respiratory type virus’s while on biologics. I do get what you’re trying to say Damo and I am really trying not to over analyse every situation but it’s going to take time. It took me 3 years to come to terms with my diagnosis. I have severe anxiety and have had since my mother and father died.

Post Edited (Theanxiousaries) : 5/26/2022 4:43:25 AM (GMT-6)

Posted 5/26/2022 10:38 AM (GMT 0)

CCinPA said...
Other than getting a toenail fungus from the place I get pedicures that was easily taken care of with meds, I think I have only had 1 bad cold in the last 5 years or so. I don't think people on biologics get any more illnesses than others.

I agree with Damo -- seems like you are looking for things to be anxious about. Why do that to yourself?


Thanks for your reply. Obviously you don’t have anxiety because if you did you wouldn’t make such an uneducated comment. People with anxiety do look for this to be anxious about! That’s what anxiety is. I’m not looking for something that isn’t there my question was more about how ppl recover from illness while on biologics. I’ve caught a virus from my grandchildren which has made me anxious yes.
Posted 5/26/2022 10:41 AM (GMT 0)
First, you should at least do an at home Covid test. If positive, immediately check with your doctor about getting one of the new Covid treatments -- I have heard good things about Paxlovid. But the treatments need to be started pretty quickly after symptoms appear.

If the test is negative, you may have just a cold and you will just need to ride it out -- drink lots of fluids, get rest, take OTC meds to help with the symptoms.

But rule out Covid first.
Posted 5/26/2022 10:45 AM (GMT 0)
I had a few colds on biologics. That's it.

On xeljanz (not a biologic) I had a skin abcess. The GP drained it and it got better. No antibiotics needed.
Posted 5/26/2022 10:49 AM (GMT 0)
I have had periods of my life where I had a lot of anxiety -- I would get panic attacks standing in a check-out line at a store and leave the store without making the purchase, or have to pull my car to the side of the road until the attack passed. I would think everything was going to be an impending disaster. It was a horrible way to live. I finally realized I was doing it to myself and when I would start going to that place with worries, I learned how to pull myself out. I can still spiral at times, but most times I can stop it before it goes too far.

I really did not mean to insult you or diminish what you are going through. You do have the power to change, but it's not easy and just take baby steps.
Posted 5/26/2022 11:07 AM (GMT 0)

CCinPA said...
First, you should at least do an at home Covid test. If positive, immediately check with your doctor about getting one of the new Covid treatments -- I have heard good things about Paxlovid. But the treatments need to be started pretty quickly after symptoms appear.

If the test is negative, you may have just a cold and you will just need to ride it out -- drink lots of fluids, get rest, take OTC meds to help with the symptoms.

But rule out Covid first.


I took a covid test on the Tuesday before I had my injection. It was negative. Over the last three days I’ve had 3 negative covid tests. I’d say it’s a mild viral infection but it did make me question how ppl have recovered from these types of illness’s. It’s very hard to stop my negative thinking when I get sick. Even before entyvio I have been a germaphobe. I admire people who just take it all in their stride I really do.. I would give any thing not to have anxiety.
Posted 5/26/2022 11:13 AM (GMT 0)
That shortness of breath tends to be the first sign. That feeling of not being able to take in enough oxygen to survive, like your lungs have been filled with cement. Your chest starts to ache while you gulp air in an attempt to address the crisis. Your teeth clench and grind and your muscles tense, your whole body coiling into self into a tight angry fist, preparing for a fight against whatever undefined threat has bought this on. You’re sweating and you’re choking and you’re quivering like a bowstring on the brink of being loosed. The fear is all around you like poisonous gas, coating your skin and squirming into your mouth and nose and ears and every pores. Not fearing anything~ but you’ll drive yourself mad running through the possibilities but just fear, distilled into its purest form.
A switch has been tripped in your head that informs the rest of your body that something is coming to get you, and you can't convince yourself otherwise.
Your mind is fogged and you can't do anything — it's a kind of paralysis, freezing you like a massive electric shock, pain and terror coursing through every cell in your body while preventing you from breaking free of it. At the worst point, ANXIETY hisses in your ear what sounds like God's own truth: you are going to die.

I used to think I was weak having Anxiety. I don’t anymore. It takes nothing but strength to fight this every day of your life and not give up

Post Edited (Theanxiousaries) : 5/26/2022 5:16:02 AM (GMT-6)

Posted 5/26/2022 11:50 AM (GMT 0)
You have described what it's like exactly. It's horrible and it feels like you are powerless to do anything about it. I am not sure what the turning point was for me. I think I just started getting mad at the anxiety and challenged the thoughts it gave me, I also learned how to deeply meditate -- that was very hard to turn off the voices in my head in order to get into the meditative state. Baby steps. It took me years to stop letting anxiety run my life, but I did claw back control little by little.

Glad your tests came back negative. Do a lot of self care for your cold. It might take a week or 2 to kick it. Hope you feel better soon!
Posted 5/26/2022 5:05 PM (GMT 0)
Turning point for me and my anxiety was getting meds. I couldn’t analyze or power through those attacks no matter how much I tried. My mind was fixated on those worry thought and I couldn’t get them out of my head until I tried medication. If you haven’t tried anxiety meds yet I really encourage you to give them a try. They’re just a tool to help you over the hump and learn there is a way to control the attacks. I felt at first that I was giving in by taking a medication but the reality is that it gave me control.

As far as being sick while on entyvio I can honestly say I’ve been less sick than before. When I do feel a cold or sore throat coming on, I hit Airborne until symptoms abate (don’t know if you have that OTC product there) and that helps a ton. I’ve had to go on antibiotics several times for bladder infections and diverticulitis attacks but they’ve had no affect on my overall health.
Posted 5/26/2022 8:58 PM (GMT 0)
I've been on biologics for 2 years, the only illness I've had in that time is Covid and I bearly even noticed I had that.
Posted 5/27/2022 3:58 AM (GMT 0)
I don't think I've had any colds on biologics. (Since 2015) I did get pyoderma gangrenosum, chicken pox and shingles. I went to my infectious disease doctor and he gave me antivirals on the chicken pox and shingles. It took me about 2 months to recover from both.. enough that I felt better and 6 months for the spots to just start to go away and fade. Have you ever thought of going to an Infectious disease doctor?.,Mine works me in quickly and when my spouse caught the flu the ID doc gave me antivirals so I wouldn't catch it.

Your description of your panic attack sounds a lot like mine. I wear a thick rubber band on my wrist and snap it so that it really stings and then redirect myself. On the days I can not redirect...I scurry home and hide in the shower to cry where no one can hear me. I also listen to calming music. And when it's really bad I bake or cry. Sometimes I do both at the same time.

I'm sorry you have panic attacks. My advice isn't very helpful..

I hope you feel better soon.

Clo
Posted 5/29/2022 2:46 AM (GMT 0)
I haven't gotten sick at all since before covid, not even a cold. I started biologics the summer before covid. I don't think I got any colds since then. Maybe 1? Can't remember.
Posted 5/31/2022 11:55 AM (GMT 0)

CCinPA said...
I have had periods of my life where I had a lot of anxiety -- I would get panic attacks standing in a check-out line at a store and leave the store without making the purchase, or have to pull my car to the side of the road until the attack passed. I would think everything was going to be an impending disaster. It was a horrible way to live. I finally realized I was doing it to myself and when I would start going to that place with worries, I learned how to pull myself out. I can still spiral at times, but most times I can stop it before it goes too far.

I really did not mean to insult you or diminish what you are going through. You do have the power to change, but it's not easy and just take baby steps.


I really am actively trying. I don’t want to live like this either. My daughter said to me “it will become your new normal mum, just like it did with the first lot of medication” maybe then I won’t be so anxious and constantly looking over my shoulder for the next horrible thing. I think I just had one thing after the other with the flare, pancreatitis, pulmonary embolism, then the joint swelling which put me back in hospital for another week. I’m terrified of what’s next. I’ve put on a faIr bit of weight. I was 46kg before it all went bad. Everyone keeps telling how good I look and that alone makes a huge difference to how I feel. I feel like I’m recovering. It’s taken a good chunk of a year. I will get there sometimes I just need someone to say you’re going to be ok
Posted 5/31/2022 12:01 PM (GMT 0)

FlowersGal said...
Turning point for me and my anxiety was getting meds. I couldn’t analyze or power through those attacks no matter how much I tried. My mind was fixated on those worry thought and I couldn’t get them out of my head until I tried medication. If you haven’t tried anxiety meds yet I really encourage you to give them a try. They’re just a tool to help you over the hump and learn there is a way to control the attacks. I felt at first that I was giving in by taking a medication but the reality is that it gave me control.

As far as being sick while on entyvio I can honestly say I’ve been less sick than before. When I do feel a cold or sore throat coming on, I hit Airborne until symptoms abate (don’t know if you have that OTC product there) and that helps a ton. I’ve had to go on antibiotics several times for bladder infections and diverticulitis attacks but they’ve had no affect on my overall health.

.
It’s funny you say that. I watched my mother fight addiction from benzodiazepines. I always thought I avoiding medication was the answer. I’ve literally suffered Without medication for 40 years. I’ve done myself no favours. This time I actually asked for medication to help me through the prednisone and my dr said no. I couldn’t believe the irony. All these years of Drs trying to force it on me. When I actually needed it I couldn’t get it. I’m definitely feeling a lot better with the hormone cream. Each month gets better and better. I find myself dancing and laughing a lot more so I know it’s working. It will take time though.
Posted 5/31/2022 12:03 PM (GMT 0)

clo2014 said...
I don't think I've had any colds on biologics. (Since 2015) I did get pyoderma gangrenosum, chicken pox and shingles. I went to my infectious disease doctor and he gave me antivirals on the chicken pox and shingles. It took me about 2 months to recover from both.. enough that I felt better and 6 months for the spots to just start to go away and fade. Have you ever thought of going to an Infectious disease doctor?.,Mine works me in quickly and when my spouse caught the flu the ID doc gave me antivirals so I wouldn't catch it.

Your description of your panic attack sounds a lot like mine. I wear a thick rubber band on my wrist and snap it so that it really stings and then redirect myself. On the days I can not redirect...I scurry home and hide in the shower to cry where no one can hear me. I also listen to calming music. And when it's really bad I bake or cry. Sometimes I do both at the same time.

I'm sorry you have panic attacks. My advice isn't very helpful..

I hope you feel better soon.
Thankyou so much. This was the reassurance I needed. Thankyou

Clo

Posted 5/31/2022 3:11 PM (GMT 0)
I’m glad you’re doing better!!!

As far as benzodiazepine and addiction— yes they are addicting but I feel that as long as you are aware of that AND afraid of it , it most likely won’t happen.

I have to fight my dr now for my refills but I’ve been taking Xanax occasionally for over 40 years now so I’m pretty sure if I was going to get addicted it would have happened a long time ago. 😃

Right now I only take it for sleeping. It happens in spurts — I’ll have a couple weeks where I have fairly bad insomnia and then it’ll go away for a month or two. I don’t like taking the Xanax more than 3 days in a row. Sometimes it’s just knowing I have the Xanax that I can take if I need to is enough confidence for me to not have to take it after all. After all these years it’s more a security blanket than anything. Still I’m surprised your dr refused you.
Posted 5/31/2022 11:52 PM (GMT 0)
I was on Humira for 5 years. At times I would get sick (sore throat, cold), but not more than the person who was not taking Humira. All in all, biologics are actually very safe medications. I feel your anxiety. I suffer from it too and it can be debilitating at times. All the best.
Posted 6/1/2022 1:02 AM (GMT 0)
Hey Anxious, what I’ve been through with my health makes me extremely anxious as well.

Prostate cancer. The only complication I did not have from that operation is death. Every other complication I had. I cannot even tell another person what to expect when they ask me because I do not have any idea of what a normal prostatectomy is like. For 6 mos. after the operation I was still paying people to take care of me while most men are playing golf 2 weeks to a month after the operation.They didn’t even get it all lol.

Pulmonary embolism
Weeks in the hospital
Blood clots in my legs. I cannot take blood thinners. They make me bleed.
Currently, 6 joints in my body are arthritic. (One has been in a brace for a year and a half).
Currently, recuperating from having an ingrown toenail cut out.

There’s more but you get the idea. We’ve both had our share of physical problems. I can see that you have. All of this contributed to my anxiety about going on Humira. I did get an upper respiratory infection during the loading doses (of course lol). I’ve told all of this to tell you this, I was an absolute nervous wreck when I began Humira. “Heck, it’s made me sick and I’m not even on it yet” was my thought processes. “How can this end well?” was how I was thinking.

I’m not trying to blow hot air up your (nose lol) just to try and make you feel better. Or to even give you hope for that matter. I’m telling you all of this to share my experience. I’ve always been an anxious person to begin with. First panic attack was at 7 years old.

Having said all of that, after being on Humira for one year, after the infection it gave me in the beginning (it was like any other flu like deal, lasted a week or two)…now…after one year, I can honestly say that taking the Humira has become much, much, much more routine for me. I’m supposed to take a shot tonight. I’ll take it tomorrow. So what? “What can this drug possibly do to me that I cannot deal with?” Is my thinking about my shot tomorrow. It has become a normal part of who I am and what I do. I even took a COVID booster and a pneumonia vaccine today. Tomorrow my Humera. So what. Big deal. I don’t see myself falling over dead tonight or tomorrow. And if I do? So what? It is what it is and there’s not a damm thing I can do about if.

I just hope you feel better. That’s my hope for you. Maybe you’ll still be very anxious a year from now. I do not know. I only know where you are coming from and I know that I have gotten use to taking this drug.

(And now I’ll give you an opinion if it it matters (which it doesn’t LOL)…in my opinion…your experience with this drug will be more like mine has been (not less). You will come to take it for what it is…just one more thing to be anxious about that will, with time, fade into the background.

You take care of yourself anxious. Personally, I believe you are gonna be just fine. (fwiw).

Take care.
——-
On Humira
Posted 6/3/2022 12:02 PM (GMT 0)

clo2014 said...
I don't think I've had any colds on biologics. (Since 2015) I did get pyoderma gangrenosum, chicken pox and shingles. I went to my infectious disease doctor and he gave me antivirals on the chicken pox and shingles. It took me about 2 months to recover from both.. enough that I felt better and 6 months for the spots to just start to go away and fade. Have you ever thought of going to an Infectious disease doctor?.,Mine works me in quickly and when my spouse caught the flu the ID doc gave me antivirals so I wouldn't catch it.

Your description of your panic attack sounds a lot like mine. I wear a thick rubber band on my wrist and snap it so that it really stings and then redirect myself. On the days I can not redirect...I scurry home and hide in the shower to cry where no one can hear me. I also listen to calming music. And when it's really bad I bake or cry. Sometimes I do both at the same time.

I'm sorry you have panic attacks. My advice isn't very helpful..

I hope you feel better soon.

Clo


Thanks clo. How did they treat your pyoderma? Is that very common, I’ve read it’s from UC. As if this crapty disease isn’t bad enough (no pun intended)
Sometimes I smell eucalyptus which helps a lot. I’ve pretty much struggled with anxiety since my dad died when I was 9. It came back pretty bad when I was 33 when my mum died. Always been scared of medication just I’ve just tried to cope. When I was diagnosed with UC I got really bad health anxiety which I still struggle with. Crying definitely helps. When I feel I can’t control a panic attack I cry. I read once we can only feel one emotion at a time so crying does work. I always dream of being free of UC and anxiety 😥 one day I hope
Posted 6/3/2022 12:04 PM (GMT 0)

tonito said...
I was on Humira for 5 years. At times I would get sick (sore throat, cold), but not more than the person who was not taking Humira. All in all, biologics are actually very safe medications. I feel your anxiety. I suffer from it too and it can be debilitating at times. All the best.


Thankyou
Posted 6/3/2022 12:23 PM (GMT 0)

island time said...
Hey Anxious, what I’ve been through with my health makes me extremely anxious as well.

Prostate cancer. The only complication I did not have from that operation is death. Every other complication I had. I cannot even tell another person what to expect when they ask me because I do not have any idea of what a normal prostatectomy is like. For 6 mos. after the operation I was still paying people to take care of me while most men are playing golf 2 weeks to a month after the operation.They didn’t even get it all lol.

Pulmonary embolism
Weeks in the hospital
Blood clots in my legs. I cannot take blood thinners. They make me bleed.
Currently, 6 joints in my body are arthritic. (One has been in a brace for a year and a half).
Currently, recuperating from having an ingrown toenail cut out.

There’s more but you get the idea. We’ve both had our share of physical problems. I can see that you have. All of this contributed to my anxiety about going on Humira. I did get an upper respiratory infection during the loading doses (of course lol). I’ve told all of this to tell you this, I was an absolute nervous wreck when I began Humira. “Heck, it’s made me sick and I’m not even on it yet” was my thought processes. “How can this end well?” was how I was thinking.

I’m not trying to blow hot air up your (nose lol) just to try and make you feel better. Or to even give you hope for that matter. I’m telling you all of this to share my experience. I’ve always been an anxious person to begin with. First panic attack was at 7 years old.

Having said all of that, after being on Humira for one year, after the infection it gave me in the beginning (it was like any other flu like deal, lasted a week or two)…now…after one year, I can honestly say that taking the Humira has become much, much, much more routine for me. I’m supposed to take a shot tonight. I’ll take it tomorrow. So what? “What can this drug possibly do to me that I cannot deal with?” Is my thinking about my shot tomorrow. It has become a normal part of who I am and what I do. I even took a COVID booster and a pneumonia vaccine today. Tomorrow my Humera. So what. Big deal. I don’t see myself falling over dead tonight or tomorrow. And if I do? So what? It is what it is and there’s not a damm thing I can do about if.

I just hope you feel better. That’s my hope for you. Maybe you’ll still be very anxious a year from now. I do not know. I only know where you are coming from and I know that I have gotten use to taking this drug.

(And now I’ll give you an opinion if it it matters (which it doesn’t LOL)…in my opinion…your experience with this drug will be more like mine has been (not less). You will come to take it for what it is…just one more thing to be anxious about that will, with time, fade into the background.

You take care of yourself anxious. Personally, I believe you are gonna be just fine. (fwiw).

Take care.
——-
On Humira


Thanks so much for taking the time to help ease my mind or atleast put things into some perspective. Tbh I think of all that’s happened the PE is what plays on my mind the most. Funnily enough I’ve always feared getting one. Then it became reality. The scariest part for me was no one believed me. I begged them to check me for a PE. They refused. I kept going back and they kept ignoring it. Then I finally got a Dr who listened. She done all the tests for PE but she went home before the results came back and I was sent home again. I got a phone call from her the next day apologising for the mistake then I spent a week in hospital on heparin infusion. I could of die any day. The fact no one listened when I knew. I had the worst cough. Chest pain, night sweats. For almost 2 weeks before they finally listened. As if anxiety isn’t bad enough. Feeling like you’re not safe in the hands of Drs is even scarier. I know you’re right. In time this will become my new normal. One thing I’ve learnt is to live for now because tomorrow is not promised. I think losing my mum scares me because I don’t want my kids to have no mum. I know how it affected me and I don’t want them to go through that. My mum was my age when she died. Island time you should do some research on nattokinaise for blood clots. It’s a powerful natural blood thinner. Thankyou again for your reassurance xx
Posted 6/3/2022 2:46 PM (GMT 0)
I'm not surprised at all. I've been refused my xanax too when I got a new doctor. Luckily, she retired and now I have another doctor who has no problem giving me my low dose I've been on for years. If you asked a GI, there's no way they'd give you it. You need to ask a family doctor and if they won't give you any, ask for a referral to a psychiatrist. And if you don't want to do that, you can lie and say you're claustrophobic and need some for a flight. But that won't give you many. Ridiculous we have to jump through hoops. Definitely never turn down an offer for a benzodiazepene script! Not these days.
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