ok, here is one for the history books - or at least my medical history. I stopped taking Enbrel around Oct 1 because it was making me feel worse, not better. But I knew I would need someone else sooner or later. I was waiting to meet with my rheumatologist when push came to shove, something was just WRONG. On Nov 15, I went down to see him. He was puzzled because he saw NO signs of inflammation, but he had been having suspicions for about a year that some of the markers were changing, but we didn't know to what. At the end of the fall semester (I work at a university), everyone is always stressed and getting sick (faculty and students). I was SO tired - but what else is new? I asked my PCP for RX for 10 mg amitriptyline to sleep better (it had been very helpful several years back). One helped but not quite enough. Just about that time, both my husband and I came down with flu (or so we thought). At the end of the Flu week (Dec 14 -Dec 21), suddenly he had terrible spasms in his neck (totally new for him, he's very healthy). I took him to the ER on the 14th, and they did a spinal tap just to rule out meningitis. Then they did a chest xray and said he had "some pneumonia" and sent him home with Levaquin, Cyclobenzaprine and Percocet (the last two are well known to me!) In the meantime, I almost passed out while trying to give him moral support during the spinal tap. The nurse gave me a wet washcloth for my forehead and I HAD to sit down the rest of the time. I figured I was just exhausted from FLU, right? The next day my husband was feeling a little better, but I had a temp of 101 degrees, so it was my turn to go to the ER. They discovered I had lobar pneumonia (upper right lobe) and advised me to stay for several days of IV antibiotics. I'm allergic to Levaquin, so the first set of IV meds was Zithromax and Rocephin, and they did absolutely nothing. The doctor quickly switched me the next day from Rocephin to Zosyn (pipercillin and something else). Within an hour I started feeling a little better. Finally! I went home Dec 26 and was doing (still am) regular nebulizer treatments every 4-6 hours. I'm getting a little better each day - but blood tests last Friday have my doctor concerned that something else totally unrelated is going on. My SED (ESR) rate is 90 (NINETY!!) and my alkaline phosphatase is 261. He's concerned something is happening in my bones. II asked, cancer possibly? (Both my parents died of two different kinds of cancer, both were smokers, and though I'm not I developed asthma 2 years ago, after an URI. I've done some reading and several organs make the Akl Phos, including my liver. My liver has also acted strangely since I got RA (2004). My PCP has ordered more tests (probably to determine the source of the AlkPhos. Meanwhile, I'm wondering if I'm going to be hit with a superflare - I feel like an accident waiting to happen. I have had a lot of foot trouble, but now my legs are starting to feel weak. We have a 'raised ranch' house and I can only go up and down the stairs a few times a day, so I try and plan and space it out. On the other hand, I read that 30% of RA patients have elevated ALkPhos and that it's the hepatobiliary (liver/bile duct) involved ment that seems to be related to the RA.Can anyone make sense out of all this for me? My husband is fine now and back to work. I will have two weeks off before I have to return - but I have a strange feeling that something else will be found out in the meantime. They did say the ESR could be elevated because of the infection (2 weeks after the diagnosis?), but that seems pretty extreme since it's 2 weeks after I started getting treated for the pneumonia.EllenPotsdam NY
Hi Carrie Beth, thanks for all the info - I did read up on some of this, and actually I do have a gastroenterologist who has been trying to figure out my weird liver for a number of years now (the good news is that all they have found is low iron - which is a good thing. But I asked him, did I really need a liver biopsy for all that?) Both my PCP and GE docs are really good about being thorough, so I have no doubt they will do as much as necessary to sort things out - the first being some specific test for protein electrophoresis, which I should find out the results tomorrow. Also, I will be redoing the blood tests from 2 weeks ago to see if they are heading back to 'normal' , or at least in the right direction.
Thank you again - I'll keep you posted!
wow... this is totally beyond my expertise. I wish I could be more useful...
I can hypothesize a couple of things, though. Your body went through a really hard thing and it tends to take a while to recover from major health events. My mother had back surgery followed by a kidney infection last summer and her body was really inflamed for a long time. We spoke to our family doctor about the possibility of RA (despite her being in the late 70s) and although she got some blood tests, which were ultimately negative, the doctor said that it was quite normal for the inflammation to take a long time to simmer down. My mother's inflammation markers were really high for months and then gradually eased off. If you look at recovery from surgery, it also takes your body a good two months to get over the offense of being cut open. And that's for people who don't have RA. RA tends to add several weeks to any estimated healing period. You had a lot of stress, both emotionally and physically, and I think it's quite likely that your body is still freaking out.
I don't know enough to say anything about your AlkiPhos tests, except to say that your research indicates that 30% of people with RA have odd liver happenings. Since you've had liver oddness since you got RA, maybe you're one of the 30%?
Please keep us posted.
I will definitely keep you posted - hopefully the suspense will diminish tomorrow after my doctor's appointment - have also had stress with the personnel office at my job bugging me to bug the doctor's office about getting the disability papers in. Another whole story, just annoying (because they didn't get them to me as soon as they could, and now I'm paying for it, but it SHOULD work out...)
I think you're probably right on - I emailed my cousin who also has RA ... and lymphoma .. and she said don't worry about it, my AlkPhos has been off for DECADES - but then again, she's in her second variety of cancer.... (nurses ignore their symptoms while paying attention to everyone else's - yes, she is a retired RHEUMATOLOGY nurse, too! LOL
Thanks for your support, everyone! I'm going bonkers just feeling in limbo about so many things - guess that means it's time I got back to work. I need a little more structure here, God.... talk about feeling helpless. The most interesting thing I've learned through all this is that healing does not progress at all in a straight line. When you think you're there, you're not - and when you don't think you're there, you actually might just about be. (har har)
yeah, and that's really frustrating thing about healing after a major illness/surgery. What I've learned though, is that when you start going stir crazy and being really bored, wanting to do something, but not quite having the energy to do it? It usually also means you should stay home a little bit longer to avoid a setback. , but you're on the right track. Almost there!
Hi all - I had my last follow-up with my doc and I'm good to go - in fact, I will go in tomorrow and 'share my desk" for one day with the retired secretary I replaced! She loves to come and fill in so that worked out well ...
My doc says my lungs sound wonderful and my xray is all clear with only the tiniest trace of what was there. He thinks the blood test results WERE just from having been ill etc. The specific test he had mentioned before hasn't even come back yet, but he has pretty much dismissed the problem and is just repeating the standard blood tests from 2 weeks ago.
So - as far as I know, all is well (except for my old RA pain, which is coming back with a vengeance - so I did bring up th equestion of when/how should/could I re-start (or begin) RA meds? He says, unless something shows up on the repeat blood tests, I can probably start in a week or so. Good deal!
woo! Good news!
yes indeedy! Ya hoo!
But I picked a cold day - it's going to be 13 below 0 (Fahrenheit) tonight so out come the long underwear!
Stay warm - - -
Back again - test results much improved this last time. Alkaline phosphatase has dropped down to within the normal range (at the top) and though my ESr is still high, it too has droppepd to about half. From 97 (yikes) it went down to 49 (now just Ra, not pneumonia on top of it!
So - BIG RELIEF!!
woo! Glad to hear it!
Oh my gosh, Ellen. My head is spinning after reading all you have been thru, so I know your head is spinning. I have no idea what is up, but something is up. Good that you have a doc who is on top of things. With all the meds you were on for pneumonia, I would think a lot of tests could be off, and may return to normal. I'm sorry I am no help in this department. I just wanted to let you know I am thinking of you and will be praying for some quick answers and phsycial and mental relief for you soon.
Thank you so much, V! Something interesting has happened since I wrote that: I had to get a fresh supply of nebulizer solution and when I went to throw out the old box (from Nov 2011), I discovered that it EXPIRED TWO MONTHS AGO! Now I am feeling even better from non-expired solution (just today) and wondering if that could have also thrown off the tests - depending on what actually it degrades into! But the good news is, I am feeling better and better - so how bad can it be?
I also got a very nice call from a nurse connected with my insurance, to follow up how I am doing and if I am in need of anything. I gave her quite an earful of stories, I was just wound up and she happened to call just then!
I am also starting to get out now - it does tire me somewhat, but then I can take a good NAP, because being with people is GOOD. I sat in the hospital bed long enough (but the nurses were really good too, and everyone explained things and gave me choices - it really felt like a team effort. Wow....
Thanks for writing, I always love to hear form you!
How is your healing going?
I am so happy you wrote back and let me know you were feeling better! Sorry you had to spend Christmas in the hospital.
I am fighting the flu that turned into a sinus infection and bronchitis. Finally feel like I am getting a handle on it. Now just mostly tired. Still hoarse from all the coughing, etc. I am taking Cipro and Albuterol inahler, etc. What a bad flu year!!!
I hope to venture out tomorrow, even if just for a short time. Would love to get out a bit. I have missed two Orencia shots and two doses of MTX, and so the RA Troll is getting unhappy, but he will just have to get over it! Gotta take care of this other nasty stuff first.
Please take care of yourself, and let me know how everything turns out. Hope your husband is better now, too...???
That sounds like the same things that are circulating here! I now have a number of friends that were sick over the entire break, like me! Sinus, bronchitis, you name it!
Do know that if the Albuterol inhaler doesn't do enough, you could be prescribeda Nebulizer like me... but hopefully you won't need that!
I have a package of Orencia sitting in my fridge since early December! Good thing I wasn't taking it when I got sick... yikes! Probably would be much worse...
omigosh - I had read your message very quickly and missed the part about the RA Troll! That is a wonderful way to refer to RA! I think now there should be an RA Troll doll (like those little smurfy kind of trolls with big tummies, full head of unmanageable hair, and the puckish smile! Then, when we're unhappy with our "troll" we can imagine throwing him/her/it into the toilet or out the window - a little sympathetic magic!
As soon as I toook that part of the message in, I got a picture of MY troll - he is hiding under the bridge (isn't that where they live?) waiting to POUNCE on me at the moment when I least expect it - I love water and bridges and interesting paths....and so when I'm out for a nice walk (or a little vacation from work), enjoying peace and quiet --- BOOO! the troll jumps out with his nasty smile and runs me off the path ARGGGGH!
LOL Exactly! That is what trolls do. I picked up that term from my best friend, who also has RA. Her rheumy calls it the RA Troll.
I want a talking RA Troll doll, so I can punch him and then he can say something...like, 'Okay, okay, I'll go away". LOL
You make me laugh ! (which is always GOOD THERAPY!)
I wonder if I still have my grown-up daughter's trolls somewhere,,,otherwise I will start looking around at the local flea markets, etc. (always fun to have a goal when shopping!) In fact, there's a huge 'Snowflake Sale' this Saturday (if I'm up to it) at the local high school. Every year the French Club holds it to raise funds for their trip to France.
Hi - good luck on that liver stuff - have you been give any other medication when you stopped the methotrexate? There are so many options, I don't know of any excuse to just leave you in pain! (I was skipped right over all those nasty liver-hating drugs because when I was first diagnosed, my liver enzymes were tripled...
Due to what's been happening, I'm not on any RA drugs right now (although I have Orencia in the fridge, waiting for the right time..) I am however taking a small dose of amitriptyline, which in small doses really helps with pain & sleep, and in larger doses (i'm on the smallest...) is given for depression. Ironic, as I got better from the pneumonia and off the antibiotics, ALL my old aches and pains from the RA started giving me grief again! The amitriptyline has been a life-saver - as I found out the other day when i tried to skip it - the next day I felt SO AWFUL, I can't even tell you - so I won't do that again! In fact, to make up for it, I took it during the day, and then the regular dose that night - and I felt SO much better today, and have not used the nebulizer at ALL today - FIRST DAY WITHOUT IT - YAY!
oops that should have been endone
I love the RA troll. Thanks for the laugh as I lay here with my shoulder so inflammed can barely type. FYI. Saw trolls at the Family Dollar store and as soon as my shoulder is able to steer the wheel am going to go and get one. Hope you all can find one too. Happy Day!
Jane, thanks for the tip! I'm actually about to head out to do a few errands (didn't get out at all yesterday and even looking forward to fresh air, even if it's colder (with a scarf around my neck and over my mouth! I'll let you know if I find "my" RA Trol!