My husband has been diagnosed with RA for over 10 years.
In September he had a very fast onset of pneumonia. He was in the hospital overnight given IV antibotics. Discharged with more antibotics. He felt better but never back to baseline. Went back to internal med doctor this past Monday because of swollen eye lids and still not feeling good. Xray shows still has fluid on the lungs and told to have pink eye so they gave him oral antibotics and script for eye drops. Started antibotics on Monday...its Wednesday night he has a temp of 100.3 and eyes still swollen.
He is on methotrexate, predisone, remicade, folic acid, and celebrex.
I have been reading all over the web in journals articles about disease with the lung and methotrexrate. Also, I already knew the dangers of chronic steriods.
My question is this...do you have any experience with methotrexate and lung issues...
And yes...its time to bring the internal med doctor and rheumatologist together and consult with each other.
Thoughts....
Hi and welcome to the board. Sorry you did have to find us, but you will get a lot of support from some very caring and knowledgeable people.
I have some questions to ask before I can really answer yours. First of all, how long has your husband been on the mtx and Remicade? Second of all, how old is he? Third, what is his dosage of his meds?
There is an incidence of lung problems with long term usage of mtx. Remicade can also cause some lung problems. Usually the dangers of chronic steroid use show in thyroid problems, adrenal gland problems, and hypertension problems.
Both of you hang in there. I know it is very frustrating right now for both of you.
Thank you so much for responding and for the welcome.
DH has been on mtx and Remicade for a long time. He's asleep so I can't ask him. Probably four or five years.
He is 38 years old.
I don't know the remicade but he gets it every six weeks.
Celebrex - 200 mg, Folic acid - 1 mg, Nexium - 40 mg, Predisone - 5mg, MTX - 2.5mg (3 pills once a week)
Thank you again and any insight is greatly appreciated...
~A
Hi Wife!
GS - correct me if I'm wrong, but don't they usually take you off the biologics with a serious infection? Am I wrong here? Isn't pneumonia 'serious'?
Sorry Wife, I had to ask as I don't use biologics (use antibiotics) but I thought that was standard operating procedure for those meds.
Hugs,
People here will help!
Pip
I know he is still taking everything now...I can't remember when he was in the hospital.
And he just woke up the bed was soaked with sweat...just moved him into the guest room...
Luckily, I have someone helping me all week because I can't lift due to spine surgery (minor compared to his illness) I had two weeks ago. I will be going with him to the doctors office tomorrow. But, I can't even change the sheets...uggh!
~Amanda
Pip! Is right. He should be taken off of all biologics (Remicade) and dmards (that is the mtx) when he is sick like this. Did one of you let his rheumy know that he was put on antibiotics and is very sick? I just had to cancel an infusion due to laryngitis. When I got there this morning, I had a fever and they said oh no way are you getting an infusion. The thing with these biologics and dmards is that they are designed to suppress the immune system to keep it from being out of control therefore keep the RA from being out of control. Once you have a suppressed immune system, you are more susceptible to catching infections and viruses. And it also makes it harder to shake everything.
It could very well be that his immune system is just so compromised that he is just very sick. It does happen to me once in a while. It could also be that the mtx is causing the lung problems. However, unless he is taken off of everything, we won’t know. I really would get on the phone to his RD (rheumatologist) in the morning and ask him why he has not been taken off of his meds to recover from his illness and can this be the mtx causing him lung problems.
It is a good idea when he sees his internal med doc for anything and he is put on antibiotics, that he gives a call over to his RD and lets them know he is on antibiotics.
Sometimes the internal med doctors don’t know to take us off our RA meds when we are sick like this.
Wife,
Are you worried about Rheumatoid Lung or Interstitial Lung Disease? Chances are small that he has that now - the lungs would normally be compromised with pneumonia. Heck, I used to get pneumonia all the time, so I should know.
If they take him off Remicade, he will probably flare after the antibiotics wear off. You need to be prepared for that. Those of us that use antibiotics to control our RA believe that we have intracellular infections that can 'reactivate' with antibiotics. We call it a 'herx'. We use our antibiotics in a low dose manner - a little bit every other day (sometimes daily) until the herx (or reaction) goes away. When a person on the biologics get an infection and they bombard the body with antibiotics, then stop, the microbes figure it's 'party time!'.
So if he decides to go back on the biologics - he needs to get back on as soon as his doc says it's OK.
Hugs,
Pip
HI Amanda, in my experience of terrible chest infection bordering on pneumonia, I was on MTX and Pred among other drugs, but these two were the ones affecting my immune system, the Drs put me into hospital on IV antibiotics for a week with worsening breathing problems the whole time, asthma meds were included 2 hourly and oxygen with no real improvement, then they started phsio! I told the hospital big boss when he came to see me that I felt it was the MTX stopping me from improving and they stopped the drug, I had almost instant benefits and had to be checked out on discharge for interstitial lung disease among other things, which were all clear thank God, I reckon once they stop the MTX and remicade if you are on it, you will see a big difference. In my thoughts and prayers Janie.Thank you to everyone for your ideas! I feel more informed...I am slammed busy this morning with children and such so I can't type long. I am going to call Rheum doc right now and I will post later with more details.
Again thank you to all!
~Amanda
Welcome wife. I'm sorry to hear your husband is suffering so with his RA.Dear Amanda, I know you can't read this right now,but I want you to know I am thinking about you and worry about what all the others have said. I had pnemounia Nov of last year and in the hospital for 7 days, was taken off of the mtx and didn't get to take it until the following March. I believe like the others your two doctors need to talk. he can probably go on with the prednisone, for stiffness and swelling from the RA, but the others 'not good'. I know I wanted to continue with my mtx, because I was in so much pain, but I had to wait.
Good luck with this as it is impossible for you to do this along, I'm glad you are calling the RA today! Lynda
Amanda...I am so glad that you are getting help and support. Stick around and there will be more for you on this forum. I am always glad when the spouse is involved!
Yep, you need to call the Rheumy, but that aside because I have had pneumonia a lot in my life....here are some things that I have learned.
1. He needs to be taking very deep breaths at least two or three an hour. It will hurt like a son of a gun! He has to do this to get air into the bottom part of his lungs.
2. He needs to sit and sleep during the day in a semi reclined position. If he sleeps flat or is flat day and night...the fluid will also pool! He may cough more, but coughing is good. If his ribs are sore...he needs a pillow to apply pressure against them.
3. STay warm....do not allow him to get chilled....feed him lots of Green Chamomile tea while he is under a blanket...even though it is gross; he has got to sweat...drinking a hot cup of tea and being under a blanket will cause him to sweat. He needs to take a shower after he sweats for a while.
4. He needs some tylenol and I think he can still take his celebrex...but check on that. Tylenol will help the fevers.
5. Get him in the sunshine for a few minutes every day. Even if you have to have him wrap up in a blanket and put coats and heavy socks on...he needs the air from outside. It is also better if he can do some deep breathing outside. Wait until the warmest part of the day.
Have they given him an inhaler??? This will also help shrink the membranes in the lungs. Check with the internal med guy to see if they can give him an inhaler of Proventil or some kind of rescue inhaler for asthmatics. Docs usually do this, but maybe there is a reason if they have not.
Also, if he will tolerate it coat his chest with vicks and put a heating pad on low on his chest. This will losen the cough.
Let us know...and I agree he should not be on any of the MTX or the biologics. I have been pulled off of them for a sinus infection. It is a serious thing!
How are you doing with all of this???
Shelly what great advice.First of all, I want to say a huge thank you to everyone for all the advice and kind thoughts!
Let's see where should I start...this is how my day went:
First, I called the Rheum Dr because DH was still sleeping this morning and miserable and asked me too. Told him about his history since september. Nurse asked "Why didn't he call us and tell us?" I said..."I'll let you handle that one when he comes in...I told him to." She said to immediately stop the MTX...his next dose was suppose to be this coming Sunday and he missed his last Remicade txt so we are covered there. She said to call his internal doctor and to have him call her back after we see internal doc today.
Next, call internal doctor and speak to nurse...very nice...takes all the information...says she will talk to doctor and call back. Nurse calls back and says Doctor doesn't need to see him and only wants to change antibotic. DH says that is not want he wants he wants to be seen today. Nurse says she will talk to the doctor again...Doctor calls back and says "If you come in here I'll just give you a new script." (I wasn't here during that conversation...which is good for the doctor's sake.) Doc says she is calling in a new script.
Little does Dr know, I work for same Healtcare system that owns that practice...I call back speak to the manager of the practice let her know we are very unhappy with the response we got. Manager very concerned...I call another office get appt with a doctor I know. We go in right after lunch. She was awesome. She listen..looked at his records...and said...something which I totally argee with..if you looked at his labs from Monday...white blood count and such are normal. If you just glance at him he looks pretty healthy...but, when you put your hands on him and listen to us both describe everything...you know something isn't right. She says she still thinks the pneumonia is hanging on because of four things: 1) the MTX and Remicade factors (stop taking those), 2) the course of antibotics while we were in the hospital was only 5 days...insufficent for his factors, 3) his adrenal (msp?) glands don't work right with the steriods..she said after you have an infection to this degree you have to ramp up the steriods to take the place of the how they usually work when you aren't on steriods; and 4) doctors not talking with each other.
So, along with the antibotics he was already on he is on a 10 day cycle of another one...he is off MTX and Remicade for now...he is ramping up the predisone for 4 days then will slowly move back down. Also, she placed a call to his Rheum doctor (and even called and left a message that he was out of town till next week) and DH was to make a appt with Rheum Dr. Which he did for Monday. She said she wants to see him if he is not feeling better in seven days.
So, since I can't lift more than 8 pounds....my mother is coming this weekend so he can rest.
I must say I was so pissed at him when I found out he didn't call his Rheum Dr after his hospitalization. I mean fuming mad. I yelled at him....told him that this is not something you can put off. He has a serious illness that could put him in grave danger and kill him. I see it all the time at work. I told him he has a wife and two small children that depend on him...that need him and that want him around for many years to come.
So, he rested today and when I worked this evening I had my aunt come and help him get the boys in bed. He went to bed early and I am about to go to bed.
But, everyone thanks again y'all did awesome!
How wonderful that you got the ball rolling and seem to now have a good doc on your side!
Hugs,
Pip
I am glad he was seen, but still do some of the things that I said to do this am. I think it will help. The deep breathing is a must...he has got to get that stuff out of his lungs and worked into the system. The pred should help as well. Make sure you get sleep, 'cause the babies need you too!
TTYL, shel
Hi Amanda and Welcome!I'm back for an update.
It's not good...
DH went off his mxt and remi...remi...he went like a month late for an infusion and mxt he was off for two weeks. He got better....no temps, but of course he was having trouble moving. He felt horrible...got check out seemed to feel better...got check out before infusion and did fine for a week.
Then, exactly...eleven days later...the temp is back.
He immediately called rheum doctor and he said to call internal doctor. DH had appt and she thinks it might be "inbedded" sinus infection. He has a CT of the head on Wednesday. She said it would make since since infection could have gotten into his lungs from his sinus through drainage.
I'm extremely worried right now. His temp is back tonight. I feel like we are losing "us" in all this...he is so miserable we can't even watch our shows on tv together now. I feel as if I am starting a "grieving" process now...
Hey Wife, how have you been? -
Many times when you take a lot of heavy hitting antibiotics you stir up a lot of latent infections. Lungs and sinus tend to be c. pneumonia. It's good that they're going to do a Cat Scan and make sure what is going on.
It's so hard for the partners with these diseases. My husband had to handle everything when I first became ill and I couldn't even watch TV either. All I did was sleep or moan. :-( Sometimes at the same time.
Don't start the greiving process - just hang on! He'll get this under control and things will be alright between you again.
Besides - there's a Writer's Strike - most seasons are over now. Think of it as a 'bright side'.
Hugs,
Pip
Hello Wife
Pip's right. Hang in there... it'll take time, but things will get better for the 2 of you.
You and Hubby hang in tight, I'm sure everything will be alright. Wife, you're a wonderful advocate for your DH and I think, if the others here who have been through similar circumstances tell you to hang in there because it's going to be alright, you can believe them. It must be so scary for you right now, but you are really on the ball and have gotten good medical care for your DH so it sounds like you just need to be patient, keep the doctors informed and hold on tight. Please keep us posted.
Thank you to Pip, Punkie, Bodak and Jesse88! All of you are wonderful! I am hanging on tight and I won't let him go...sometimes I have to kick him in the behind to make him fight. I also am really trying to be positive for him even though I do feel as though I am sinking.
Pip...funny you mention the writer's strike...I'm pissed my shows are ending now...don't they understand this is my only form of entertainment right now...how dare they demand to be paid for their work? Wife, please don't give up on your hubby yet. He will pull through, we always do. He may not say it but it means everything to him that you are pulling for him and willing to kick his butt occasionally. Make sure you're taking time to take care of yourself also. I read somewhere that caregivers often suffer from chronic medical issues too because they put all of their energy into the sick person. I hope that everything works out for you two soon.
Amanda Welcome to the board and I am so sorry about your husband. I am glad you got him into a different internal dr. Like the others say it will take some time but he will get better. May I make a suggestion , if you have a computer at home, make a file with your husband's list of meds and dosages, keep it updated. whenever your hubby goes to see a dr print up the file and have him take it with him to give to the dr. this way they always have a current list of his meds so that should help them make sure they don' complcate his situation. It was shame what has happen to your husband, I know we will all keep him in our thoughts, take of yourself too and remember everyone is here for you.
I'll let everyone know something when we here the results. His appt isn't until tomorrow afternoon so it might be a day or two!
Wife, your husband is lucky to have you. Good luck! Wife, I just wanted to say hello! Everything is going to be fine. JFR just needs to get over this hump. Sometimes it seems like everything kind of snowballs, but in the end it turns out all right. I will be thinking of ya'll.He said there was one problem....they didn't see a brain...haha.
Seriously, he has a followup with internal doc tomorrow...his left eye is almost swollen shut today. I feel so bad for DH...he has a training he has to do this afternoon. He feels so embarrassed by his eye.
I'll let you know what the doc says tomorrow!
Amanda ~