Hey everyone I wanted to share an experience about getting sick and how it can happen quickly. So, it started with my eye bothering me and I thought it was allergies so I started treating it accordingly. I started loosing my appetite and at the same time my wife had a stomach bug and was dealing with that for about 24 hours. I was drinking liquids and making myself eat but for the next week I was not feeling well. Then came stage two with me loosing liquids rapidly and I was not vomiting. After that, there was no way I could keep up and my sodium was low along with other crucial things.
I then relented and went to the doctor and it was not my normal doctor but someone in the same office. I was desperate so I made the app. I went in and he checked me out, tested urine, and swabbed nose and mouth. Nothing seemed evident that showed any cause for major concern. The 3rd week I started getting a low grade fever and discovered that tylenol would not touch. It did nothing for fever so I switched to a nsaid and that did the trick. I called the doctor that saw me the day before and he gave me augmentin. I started taking it immidiately but by that point it was to late. My fever was coming on 4-5 times daily and would hit me particularly hard while sleeping. The fever started spiking to 103.8 and a little above. My wife woke me up and said look this is not normal and I was burning her up.
She encouraged me to go see my normal doctor that morning and so I scheduled and went in. He promptly looked me over and said you are at a point where you need to go to the hospital and I will add you to my rounds. So I really did not want to do this but by that point I was feeling transparent and realized I was loosing this battle.
I spent three nights in the hospital taking some strong antibiotics through IV. I was put on steriods and some other stuff. By day three I was exhausted and determined to get out. It is amazing how little sleep you get in a hospital.
After discharge I was then assigned two more antibiotics and started those immediately. I am almost done but one of these antibiotics is the worse thing I have ever taken in pill form. So today is my last day with those drugs and I was told I would regain my strength with a couple of weeks. It turns out that I had some sort of bacterial infection in the gut. At first it was thought I might have diverticulitis. I was not septic but it could have went that way fast. Now my doctor believes it is likely that I have colitis. I am still not normal but I am hoping I will soon be normal. I have been taking taltz for a while. My doctor mentioned that I have a hyper immune system response. I was sweating constantly like buckets and chilled. I could feel the fever come in waves and at first I would start getting cold and then suddenly my fever would spike.
Let this be a precautionary tale for others with immune system problems. You can get in a jam really quick and it sneaks up on you. It will zap you and you loose functional decision making. My doctor thinks it will be evident if the immune system is acting strange and I will have something similar happen again. I can tell you this, my joints hurt big time like worse than normal when my fever would hit hard. I think this coincides with a super spike of white blood cells. I was producing way to many outside the normal range. I kind of think due to the increase in activity of the immune system the worse my joints were affected. I was producing way to many. I hope this experience may help others and I figure some of you probably have some similar immune system problems. Sorry for the book.
Wow! That is really not a good experience. I’m sorry to hear that it got bad enough for you to be hospitalized.
Do you have guidelines for when to call your doctor? For example, I know that if I have a fever I am supposed to hold my Enbrel. If my pericarditis /pleuritis starts up, I’m supposed to immediately start a high dose of NSAIDs. It gives me some power.
Yea it was bad. Yes, I do now. I have the emergency # for my doctor. The thing was is that it was not really obviously bad until it was. My doctor was out but by that point I had waited to long. I am holding on my Taltz a few days but I was instructed to continue. I figure I have a good 6-8 days before I need to do it since I have been on it for a bit. I talked with my pharmacy special order. My doctor recommends I continue as normal. I am going to wait a couple of days more. I was already on steroids and nsaids. My tools were already being used at capacity. I did find it odd that tylenol basically did nothing for my fever. Basically, once the fever gets to 100 then I should have acted immediately but it was the gradual degree of not that concerning to wow fever is out of control. I think about 5-7 days were the crucial time to act and I am not sure if antibiotics would have made a difference quick enough. I needed some heavy stuff through IV and fluids. Maybe I could have avoided the hospital but I am not so sure. It is something I need to watch anytime I get sick and if it happens again then it is probably likely that my immune system is whacked and over reactive. Anyone else running above normal on white cells when sick?
WOW! I’m glad you’re on the road to recovery! That’s really scary. Yes, you could have very easily went septic and thank God you didn’t!
Wake up call for all of us. Thanks for posting your story. I take a lot of chances being around grandkids with strep, pneumonia and other bad things. So far I haven’t caught anything too bad. Well, the one time I caught strep my doctor put me on the real thing—penicillin—and I had no complications.
Do you generally have low white blood cells? I think all people on steroids, biologics and DMARDS should have their WBCs checked occasionally. My doctors watch mine closely. It’s always slightly below normal, which they call leukopenia. They tell me if it goes much lower I’ll have to stop taking Enbrel.
I think you said you take Taltz and steroids. Do those two meds combined lower your WBCs and the ability to fight off infections? Is there any chance you could take the Taltz and stop taking steroids?
Just wondering…what you had sounds really dangerous and thankfully your doctors acknowledged the seriousness of it and put you in the hospital!
My white blood counts are within the normal range well until I get really ill. It appears that once there is some illness then I produce too many. What amazes me is that with steroids and Taltz that my immune system can still get crazy. I think the doctor was concerned about inflammation in the gut and wanted to keep that under control. Your point about steroids and taltz lowering my wbc is not what I experienced while an infection occurs. I am kind of dumbfound why my wbc would be so high while taking all these meds. It seems contradictory in nature but maybe it is complex and my immune system was slow at first and then just went overboard once the infection was set in. I do not know but as I go on I will probably figure it out. Once I started antibiotics in the hospital my immune system calmed down rather quickly. Surely that is not a coincidence.
To give an idea of how high my entry WBC was 22.0 h my Neutrophils was 90.2 h. Then the next day after antibiotics and treatment WBC 13.1 h with Neutrophils 11.30 h and followed by day 3 WBC at 10.6. I do not have the last blood test but I was told it was normal. I do not know much about numbers but that first one appears to be high.
I too have gut inflammation, and this has been my experience. It’s like my immune system toddles along at a high normal with the WBC while I’m on meds, even with a mild infection, then somehow a threshold is crossed and it goes nuts literally within hours. Thankfully you’ve found this out without the experience of septicaemia!
In my case I tend to “look” fine even as my immune system is going nuts, and most medical professionals don’t seem to spot I’m in trouble, so if this is also you, keep in mind you could do with a GP or family member to advocate for you during these times (as despite looking ok, you won’t be in the state to do it).
I don’t think it’s the “normal” pattern for an immune system reaction to an infection, so I think it can be rather unexpected for the doctors.
Lucky you thankfully. It’s sometimes too easy to forget what biologics are doing and the risks that come with them. I’m so glad you caught it in the nick of time.
I hope so too, sounds like you are on the mend but wow, weeks of all this. It must have been extremely confusing and worrying.
I accept that I have a dodgy immune system even with the meds but it’s not something that gets much coverage at rheumy appointments, probably because it’s so complex and unpredictable. My simplistic way of thinking about it is that anything that hits me hits harder than it would if the immune system was normal.
Sounds like your doctors did understand what was happening eventually and were able to make sense of it … that must have been reassuring at least.
Recover well Woodworm, look after yourself.
It boggles the mind, doesn’t it? It sure doesn’t make sense how your WBCs are so high even though you’re on meds that typically lower these numbers.
I have no idea what my numbers were before I started Enbrel 5 years ago. I’m sure the information is on my chart, but I’d have to dig for it. I’ve always seemed to have a good immune system. I never used to catch colds and all that nasty stomach stuff. This past winter was bad, though. I had one cold after the other…but so did a lot of people I know. We had a very severe winter—maybe there’s a connection?
Whatever, whatever…there’s never a dull moment when it comes to our PsA health and how life in general affects our fragile bodies every day! (I would love to say I’m not fragile, but I can’t deny I am!). How about you?
Yes Grandma_J, health can swing on a dime. I think it is hard to see the delicate balance or appreciate it until it hits one personally. I am comfortable saying that I am indeed fragile. It is easy to loose sight of that when you are doing somewhat okay.
Thanks, for the advice. It made a difference when my wife was at my appointment and of course her perception of what was not normal. It helps to have a partner that looks out for you.
I’m 65. I know that’s not young. It wasn’t too many years ago the average life expectancy was 65. But, it doesn’t seem “normal” to be fragile at this age. And, to be clear, it’s not fragile like glass, it’s a different kind of fragile. It’s like having to be handled with care because something really terrible is looming. It’s the poor immune system, the psoriasis acting up, the symptoms that are sort of under control from the meds but the damaged parts a constant reminder of what the disease has already done, the pain in walking and that constant feeling of sadness about it all. It’s all the other things secondary to PsA, too. I know there are a lot of people with PsA and all sorts of chronic diseases who are way worse off than me. But I’m still disappointed.
My mom, 94, started being fragile at about 89. Honestly! My older siblings aren’t fragile. I know this isn’t normal. So, I do wonder, why me?
Think you for your honest reflection on your condition. I’m still pretty new to this disease…only 7 weeks since I started on MTX. I can identify with the question, “Why me”, but feel like it is an unanswerable question best left alone. You nor I nor anyone else with less than perfect health should ever consider this as something deserved. I have 2 older siblings who are as active as I was and now I admit, that I am a bit envious of them. By “natural” thinking, THEY should be further down the line towards aches and pains than me. Not that I wish anything bad on them but I feel a bit weak and vulnerable and think that I should be feeling sorry for THEM…not them feeling bad for me. But, we can’t change any of it. I am slowly learning to be thankful even for this PsA…and am learning that the One in whom I trust loves me, cares for me and never leaves me. This has slowed me down to an acceptable pace in which I am more grateful for the small things, and I can identify with a new empathy for the many others who wake up hurting and lie down hurting. Drawing near to one another is necessary and very precious. In no way am I judging you or your response to the PsA…but I am learning that pain has such a loud voice that we tend to only listen to it and little else…but there are other better voices to hear. Look up, be encouraged by those “good moments” and I will pray for you! I’m writing this during a flair up…and By God, I will be surprisingly joyful. Hang in there.
Hey Amos, when I was writing that last post my pain was shouting pretty loud at me. But, I did feel like I was speaking for a lot of people, not just myself. We all have some crud to deal with, and every day it comes in different degrees. Unfortunately, my biggest crud is my feet. And when they hurt bad it’s nearly unbearable—that definitely can put me in a funky mood and sort of feeling sorry for myself.
I do consider myself very lucky, too, certainly not because I have PsA, but because I’ve met this great group of people here with whom I can identify. Another reason to be thankful is that I have the most wonderful family. Plus, I love my job. So, it’s all good here for the most part. I apologize for sounding like a chronic complainer!
You were lucky. I am on my 5th ear and lung infection in 12 months. My doctor insists I be seen within 24 hours of any infection symptoms.
I have a pretty serious infection. My rheumy doesn’t want me back on the Taltz until the infection is completely gone. I was wondering if anyone has been in the same situation?
I want to start my meds ASAP, but not quite sure of the dosing. It is very frustrating when one doctor contradicts another.
There is nothing normal about this disease. It impacts every aspect of living a “normal” life, obviously different for everyone. Difficult to explain the chronic pain and fatigue to people who aren’t affected. I have found that we need to be proactive in coordinating our care. I personally found that bringing a family member or friend with you to doctors appointments helps. They are able to see your symtoms easier and from a different perspective, asking questions that I didn’t think of asking. Hope this helps someone…
Hey, in my case I was directed to continue treatment but I can see how that will vary wildly depending on specifics and the doctor. I decided to wait before resuming treatment with Taltz until I return to a more healthy state. However, I am still taking nsaids and prednisone. I am slowly returning to normal and am getting stronger.
The bad part of this is yes I am breaking out and having swelling in strange places like the palm of my hand where there is pain. It is either a tendon or muscle or something. I have noticed I can have swelling just about anywhere so some part of this disease is more complicated than it appears. It is not that I have one particular thing but many and varying locations that is related to psa… With time and experience the picture becomes clearer. I am not recommending starting or stopping treatment. Infections are tricky things to navigate. That call is made by me and my partner along with medical advice from my doctor.
Well I’ve had Symponi every two months for a year. Figured out URIs and ear infections occurred about 7-10 days after every infusion. I’m 6 for 6. I got a consult at Ohio State University a month ago. Was told after 2 failed trials on biologists , she would have switched me to a different class. I had 4 failed biologists! I have switched my care to OSU. Now waiting for Symponi to clear my system.
Hang in there Grandma. I’m 64 and despite feeling the fragility you describe my brain constantly fights with my body about physically feeling old. This crappy disease has interrupted many goals, plans and made retaining relationships harder. All my friends and synagogue family know of my disease. I’m a nurse, more spiritual in my relationship with God and. It’s difficult but I try to find a meaning for why me. I was angry at God for a few years before I figured out it’s no one’s fault. It just is. So my hubby and I make the best of good days, and try to bear the flares. Keep your soul young. You are only as old as you think you are.