On Topic Immunosuppressants | Arthritis Information

 

Second time typing this. It was really long so you will probably appreciate I lost it. Day before yesterday I got a toothache and within a couple hours my entire face was swollen horribly. I had a migraine, I was stuffing my mouth with cloves, gauze soaked in throat spray and ambesol for the anesthetic; VERY painful earache and my eyes were swollen almost all the way shut. My daughter stayed up with me all night as I did not want to call ambulance - afraid they would not call it an emergency and I would have to pay for it. Next day my ex-husband stopped by and pretty much said OMG You have to go to the hospital. (On top of it, it was Kelsey's birthday). I was taking strong painkillers like candy and it would only take the edge off the pain for about 20 minutes and the intolerable pain would be back . Never been in so much pain and we all know from RA - we have a high tolerance to pain. My aide came over and took me to the clinic next to hospital so we could get in faster. Brett stayed with Kelsey. I could not have had a more compassionate doctor. My pain was obvious from the swelling. Doctor had a really difficult time getting the gauze out and as soon as the air hit, I cannot explain this pain, so intense and really shooting pain. (You ever see Marathon Man with Dustin Hauffman?????) Doctor had a hard time prying mouth open because of swelling. He got gauze out and put a bunch of gauze in with Novacaine. Did nothing. The Pain was not concentrated in my gums or teeth, it was my entire head. He shot novacaine up there and it did nothing. He gave me a a shot of very strong painkillerin the butt and he said it would knock me out, NOTHING! I was panicking. The pain was only worse. Doctor finally decided to admit me in the hospital but he wanted me in an isolated room as I had just had my Engrel shot, on 30 mg. pred and it was obvious my body was very susceptible to infection.    I went to hospital and they put me on an IV of Demerol and antibiotics. They had to raise the dose of Demerol as the pain was only getting worse. It finally took - my migraine was better, I could cope and the pain in my face and head were better. The doctor at the hospital was also very kind. After they had knocked me out for a couple hours, they woke me to tell me that they did not have an isolated room available and left it up to me. Well after hearing the concern from the first doctor, (we tried to get ahold of him but he was gone) I decided to come home. We all hear the stories of when RA pts. go in hospital on high immunosuppressants, our risk for contracting other infections. I would have had to share a room with two other people.   I took a cab home, I had called my brother and he had Kelsey so I stayed up all night, taking percocet and oxycontin. I could not afford to have the cab take me to pharmacy. Up all night. Taking high doses of painkillers all night. My aide went to pharmacy andjust gave me my pennicilin so I pray it will get better. It is only worse now - my mouth is so swollen I can hardly open it, eyes are almost completely swollen shut (just a squint) and my migraine is back. I pray the pennicillin starts working quickly as I do not want to be hospitalized but doctor said if swelling is not down by tomorrow I had to go.   Tomorrow is an election night party at my families that I have really been looking forward to. My family is going to set me up in a bedlike setting, and no contact from anyone - they did not want me to go but I have been looking forward to this for a long, long time. I think it will be safe. Everyone knows to give me a wide birth and no contact. Besides, my rd is in the big city where they are and I can go to the WAY BETTER hospital there if I have to.

My aide was and is my best friend and stayed by my side all day Sunday - her day off -at the hospital. Cried with me, held my hand, rubbed me. I am so blessed by her.

Last time I was on Enbrel I got a lot of infections so I pray, pray, pray I will not get taken off of Enbrel. That was our hypothesis why it quit working (My rd then) and it really has helped me this time.

So the moral to the very very long story IS = we really do have impaired immune systems and it can be very dangerous. I guess this infection could actually go to my brain. If the swelling is not better today Dr. said I have to be hospitalized no matter what. He said I could not get the tooth pulled and root canal until the infection is completely gone. I have run a fever constantly since it started but I am glad to be home with all my pets.

Sorry such a long story but it amazed me how bad and quickly I got such a bad infection.

BE CAREFUL !!!!!!!!!!!! roxy2008-11-03 13:48:04Roxy, you should be in the hospital on iv antibiotics at the very least. This sounds very serious. If you don't improve in the next couple of hours you need to go back to the hospital. Take care of yourself, please.Gracie - I am going back in tomorrow if it does not improve. The doctors are concerned about infection IN the hospital. It is a funky hospital and I am hoping if I do go back in - I get and isolated room with special precautions. Thanks Gracie. OUCHHHHHHHH!

Free - I don't have a dentist yet. I used to be really good about my teeth but the last two years, I have neglected finding one since I moved. Doctor said he could not do anything until infection is gone anyway.   

 

Oh gosh Roxy, I hope that you feel better soon.  Please let us know how you are and give Kelsey a Birthday Hug for me. 

Hugs

I hope you get to feeling better soon. so you wont have to go back to the hospital.  If you have any ASAID's around, a dose of that every 6 hours helps too believe it or not.  Take care of yourself.

Hi Roxy, so sorry to read of your dilemma, I appreciate the warning though, my hubby is interested in applying for a job as a wardsman at the local hospital, I am about to start Rituximab and I feel maybe he should not go for this job, any thoughts?  Regards, hope you feel better soon, Janie. Becareful....My Granny who lived to 100 and 9 months said to me ....She didn't want to go into a hospital...."to many sick people"...by that she meant the germs...Please be very careful. I hope the antibiotic starts to kick the infections butt. So sorry Rox  Hope the antibiotic get to work and start to feel better! Thank you all for your concern. Janie - I would be very concerned being around someone who was constantly being exposed to illness. My example I am common. I never had an illness, infection, take off like this. My mouth just feels mangled. Having said that -

I am brain dead because I cannot remember who made pennicillin but I sure am feeling grateful. I was very frightened tonight. I asked Brett to stay and babysit me as Kelsey is at my familys. I was so worried about the infection going to my brain. I have not brushed my teeth in three days. GROSS. BUT - I Fell asleep in my chair this evening and I woke up feeling so much better. The swelling is down some and the pain is down. I have taken so many pain pills lately I am going to regret it but the pain was truly beyond my experience.

So I am going to bed. I have not slept in two nights and I am soooooooooo tired.   Thank you again for the concern. It has been quite an experience and I thought it was important to share it as it would not have happned if it were not for my immunosupprsants.

BE careful you all.

BE SURE TO VOTE TOMRROW !!!!!!!!!!!!!!!!!!!




roxy2008-11-05 10:37:58The swelling has moved to below my eye to my lower jaw, upper jaw, lips and lymph glands. I have a cut that is looking infected. The pain is bad. I think I need a more potent antibiotic and higher strength painkillers. I am very nervous about going to hospital with impaired immune system, open sore and BAD mouth infection. Constant fever. Unless I can get an isolated room, I think I am to afraid to expose myself to hospital. I will probably have to spend some hours there to get stronger antibiotics and meds for pain or maybe another shot. I just know I will likely be there for an easy five hours which makes me nervous. I am getting a first hand experience that our immune systems are impaired, especially if you are on a biologic. This thing should be healing, I cannot even break the fever and then to have this cut suddenly infected - my God - we have to take these drugs seriously and be careful. We will see what happens today. I don't even want to get out of bed - so weak. Any similar experiences out there?

I guess it is a relief to post. I can only communicate through writing and handwriting hurts my hands and not very legible.roxy2008-11-05 10:39:25

go to the hospital

Well, it got worse. I woke up yesterday and could not talk at all. The pain could not be controlled. Called the hospital on speaker and wrote while my husband read and I grunted LOL    I was going to stay but all I wanted to do was be home with my pups. They have never gotten me sick.

I have become very brave about painful procedures. I liked this doctor too. We went through the pain meds he could give me via IV and we opted for fentanal. That is what my doctor wants to put me on since my insurance is refusing to pay for oxycontin - all because my forms were not filled out properly and my doctor refuses to re-do them. I like oxycontin as I function very well on it, it works for the pain. So far I have been on for the big gun meds morphine, methadone, oxy and now fentanyl which I did not like at ll - very weak muscles and can't think worth sh*t. SOOOOOO - any recommends for long term meds would be appreciated as I go to doc tomorrow to decide what to put me on next. I digress - back to hospital.

After four hours of drip antibiotic and fentenyl, doctor decided to come in and try to cut into roof of mouth and clean out abscess himself. I amaze myself how brave I have gotten. I do not complain about anything - just do what you have to do. The fear is gone except I am not ready to die. The people around me, my pups and kitten and cable tv keep me going. Kelsey and my relationship has gotten very close and I miss her. She has veen staying at my famiies while I go through this. She was so sweet = she did not want to go, she wanted to go to hospital with me but she has been gone 4 days today.

Anyway, the doc had to put in easily ten shots into roof of my mouth -yeah it hurt -just to be able to take the gauze out. Then he made at least ten criss cross cuts into the roof of mouth. Yep, even with the shots they hurt and lots of blood. He said the infection did not come out so he wanted a C-scan of my brain to see if infection had spread and was dangerous. After he left my room, my mouth was all numb and bleeding but I kept feeling this thick gunk hanging down from my mouth. I went out and told the nurses but nobody would look at it. I took paper towels and very gingerly kept pulling out a snot like substance. During this time, the ER was busy and everyone would ignore me. I was certain it must have been the infection but who am I to say. I was finally rolled off for C-Scan where they put iodine in my veins, wierd sensation, after I got out of machine, I asked the tech for a paper towel and pulled out more "gunk" and the tech said it sure looked like puss like an infection. So, I think he drained a lot of the gunk and didn't realize it. By the time they got me back to my room and were going to put me in overnight room, the doctor I had liked was gone for the day, I decided I was out of there. I demanded to leave, I tried to leave once, ( I was high on Fentanyl) wiithout taking my IV out LOL. So, after being a bitch, I got IV out, called aide and came home . Eight hours was long enough for me to be in that hospital!!!!!! I did get my antibiotics stronger and pain pills (percocet) doubled. I really think some of the infection had drained.

Tough time once I got home dealing with pain. My pain meds just are not very effective any more and out of oxy (I had one left) so percocet is all I have. Used an icepak and took my last oxy and finally went to bed. At least I had my pups. I called my family and they were pisssed I came home but I do not know about you but with RA - I do not know what I am more afraid of - treatment or hospitals. I do know I would rather be home with my dogs.

So slept a few hours, middle of the night and "sharing". Isn't RA fun?????? I forgot to tell you, I had a long cut on hand, not healed, so that made my hospital stay a little creepier.

I see my primary today. She may fire me as I do not want painkilers that make me tired and that is probably what I will get. I am going to get a dentist appt. going today and they can just pull that bugger tooth out. I have lost all vanity

Rocky - seems like about an even poll whether I should be in hospital. We will see if this does not get better but I do know - I will go out of town to another hospital - I like the doctors but to be so flippant about MRSA and cleanliness - makes me paranoid

















And if the nurse did not wash her hands before touching your IV why on earth didn't you speak up and stop her? WOW- let us know how you are doing today. I hope you'll get better !

I just called the meds we take POISON (I am on MTX) and somebody felt offended, on another topic.

I really am going to campaign for elimination diet. We need another campain. :) No matter if it doesn't do much for me, maybe for somebody else it will prove effective. See my topic. Roxy - You are risking this infection going systemic. Pain meds are great, but the pain is there for a reason and that is to force you into action. When I had meningitis this summer, I waited to go to the doctor when I first started to get sick. I had pain meds and anti-nausea meds that were subduing my symptoms enough that I was just comfortable enough to stay in bed and sleep. If I hadn't taken them, I would have been in intolerable pain and forced to seek medical attention earlier. Also, as I became sicker, I was less willing to leave the house because all I wanted to do was sleep. If it hadn't been for my husband insisting that I go to the doctor, I would have become much sicker and who knows what the result would have been? Even so, I still needed continuous iv antibiotics for nearly three weeks, and then oral antibiotics for another month to be sure the infection was gone. And, I still wasn't out of the woods. The infection turned into osteomyelitis which then required another round of iv and oral antibiotics for an additional 6 weeks.

Please, please get to a hospital where you can stay and be cared for appropriately. Can't your primary doctor call the hospital and arrange for a room in isolation? There's got to be some way to do that. Let us know what happens. I hope you feel better soon.OH MY GOSH!!!!! As most of you know I am at the hospital where my son is being treated for MRSA...I have had to tell several health careworkers...to put gloves on before touching my son.....jeesh...A few replied that the culture hasnt come back yet...but I tell them he is being treated for MRSA....plus we are in a controlled isolation room...Duh...He just recieved the MRSA DX a little while ago.... I say go to the hospital and speak up if they don't wash hands and such...take care of your self... This could turn way worse for you.
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