Life with a Flare

I have now actually completed both of my Rituxan infusions for this round. This was probably the most frustrating round as I was trying to figure out how I would feel after each infusion so I could plan but everyone I talked to seem to have different experiences with the medicine. SO my disclaimer is my experience may be different from yours. Infusion Day  Both infusions were scheduled for 8AM since this medication takes a pretty long time to infuse and if there are any reactions it takes even longer so I was the first person at the infusion center. The infusion center is the same one I used to go to for IV fluids before I got my port 2 years ago (although it has since moved from a building across the street to inside the hospital) so I knew a good amount of the nurses and it was nice to catch up. One of the new nurses I knew as well because she was an RA in my building freshman year, small world. For the first infusion my port was already accessed but for the second infusion...

So while it has only been 3 months since I last wrote instead of 6 months, a lot of things have happened with my health. After student teaching I refuse to be on prednisone for a little while. That didn't go so well and there was a month full of ulcers. I couldn't talk, I couldn't eat, I couldn't sleep much. I was not a happy or pleasant human being, which is all the things I hate about being on it. At this point they were running down my throat and I could not swallow. So after a month of this it was time for camp and that meant I needed to be able to talk without wanting to cry and I gave in to the steroids and have been on the highest daily dose yet ever since. Also Behcet's now seems to be the responsible disease for at least this mess. Meanwhile my ability to swallow liquids has also struggled. Most of the time it was pretty solid but more times than I would like I cannot seem to get the coordination down and it seems to go down the wrong pipe and cause ...

I am not sure where I am going with this blog post but it will probably end up being a warning to all of those people who bite off more than you can chew like me. I also just need to try to calm my mind that feels like it is going a million miles a minute, as a result my writing may be all over the place. I am thinking writing will help. Tonight I ended up near tears because I lent my pen to someone and they returned it without the cap. On the ground crawling around for the pen cap I realized I may have over done life this week and I needed chocolate or ice cream or more likely both. I wanted to think about all the things that had lead me here so in the future I could prevent such break downs from occurring in the future. First off there is some medical stuff that is definitely going in to play here. A few weeks after being diagnosed with Sjogren's my POTS symptoms were acting up and I email rheum instead of cardio this time since we now know the cause. We decided to see ...

A little over a week after Sjogren's was confirmed I had an appointment with my rheumatologist. My head was filled with questions and possibly a little too much online reading (however I have graduated from google and now use my college's online database to read medical textbooks). I had a list of questions on my phone I wanted to ask and did get to most of them. However the ones I missed was due to me already feeling overwhelmed and wanting to focus on specific things, not because the doctor rushed me which is a nice change. The most important part of the appointment was figuring out a treatment plan. My rheumy asked what the most pressing symptom is and obviously it is the autonomic nervous system issues (autonomic neuropathy). He thought the best treatment option was a medication call azathioprine (Imuran), which is an immunosuppressant drug. However before I could start I need a blood test to see if I had the enzyme needed to properly metabolize the medication (10% of the...

As I mentioned in a previous update, a couple month ago my joints started flaring badly. This is definitively on of the worse flares I have ever been in if not the worst. After a burst of prednisone did not stop it (well it helped till I weaned off of it) I went to see my rheumatologist. At the appointment after describing my symptoms she mention Enbrel but wanted to do a physical exam first. If there was obvious signs of inflammation on the exam she would prescribe the medication but if not she was going to send me for an MRI to look for inflammation first. Well by the end of the exam there was no question my joints were not in good shape, Enbrel was prescribed. We wrapped up the appointment by adding back in some lower dose Prednisone as well. Then the nurse came in to teach me how to do the Enbrel injections, super fun. Overall doing the injections is actually relatively simple. Compared to an Infusion the Enbrel Supplies are Pretty Simple  Now to get down to the...

My Lungs Got a Close Up and I Got to Choose the Gown Color Every semester I seem to be muddling through at the end. In fact this trend pre-dates my college career. December of senior year I was diagnosed with Uveitis. Two days after graduation I had hip surgery, meaning the two weeks before that I was medication less, not pretty. Then in college I was diagnosed with Celiac about 5 days before my first set of finals. Spring of last year the week before finals was when erythromycin stopped working and my downward spiral towards the feeding tube began. This past fall semester my POTS was so bad during finals I thought I was going to pass out during my math final, I lasted until 2 hours after it. In the ER I found out I at least got a 90% on the final and the doctor high fived me.  So in true Joan fashion something had to go wrong in the past two weeks of my life and sure enough something did. Unlike in the past I was much more blindsided by it. With past finals weeks the healt...

Once upon a time this was a blog I updated on my health multiple times a week. I now realize since the whole NJ tube thing I have not given an actual update on my health. A lot has happened in the last few months to say the least. I think the best way to go about this would be to go by specialist: Rheumatology- As I mentioned a few post ago at my last appointment with my rheumatologist my joints were doing amazingly and I don't have to go back for a year. As of now I am only on celebrex for my joints, which I was really hoping to get off of but since sulfasalazine clogged my tube that went instead. The last week or two my left SI joint has been a bit stiff and sore but I am hoping tylenol will be enough for it. GI- In September I saw a GI at Temple Hospital who is supposed to be the top doc for gastroparesis. He put me on domperidone, which is not FDA approved and did not help. The only thing he had left for me was an experimental surgery with a 50-60% success rate so I am taki...

Two years ago I was doing my research before my first rheumatology appointment and I discovered most people with autoimmune arthritis are on self injectable medication. 90% of kids with Juvenile Arthritis take a medication call Methotrexate, which can be taken orally but is mostly done by injection. Although I was also pretty positive we were not going to find anything at my rheumy appointment so I didn't think much about it. Once we discovered Uveitis in my eye though I thought my fate was sealed. Just under two years ago I was trying to prepare myself for the idea of sticking a needle in my leg. Within a few months of my then rheumy not doing anything I realized as long as I was under her care, for better or worse, I was not in danger of having to self inject. Under the care of my current rheumy the thought of possible self injections was on a very far back burner in my mind for a while but since my joints have done so well in the recent months it has totally disappeared. So to...

Celiac Update I started meting with the dietitian on my campus and she is really great (I actually babysit for her kids now). She had me keep a food journal, and we saw I was not eating enough. I added in snacks, I try my best to get two in a day but some days just go better than on that front. I can't seem to break 125 lb, which is okay if I maintain it but not id I lose anymore weight. I also met with Disability Services on my campus and was able to get my meal plan down graded so I am mostly cooking for myself. I was also able to get disability housing for next year so I am getting an apartment with  full kitchen. Last week I saw my GI. She prescribed Periactin to help my nausea (which is why I have so much trouble getting enough food). I am only taking one pill a day right now but we may up it this week. The reason I started with such a low dose is because it causes severe drowsiness. I was actually falling asleep in class the day after my first dose as I was drinking cof...

On Sunday my stomach pain started to get worse than it had been, and continued to worsen until finally on Monday it was more than I could handle. My RA went to get some EMTs but instead found police. The police wanted my to take an ambulance to the ER but I was not going for that, because there is a fine for the ambulance because it is assumed you are drunk. The police kept insisting I may have appendicitis and my appendix may burst, I tried to explain my pain had already been diagnosed by a doctor and it was not in fact appendicitis. They finally made me sign a release saying I refused to be taken to the hospital in an ambulance. Next my RA hailed a taxi and we took that to the University Hospital. I was admitted as soon as we got there. And was treated to gastritis of course (and not even checked to appendicitis). First I was given Zofran, which help with my nausea but not pain. A while later I was a GI cocktail, which was bubble gum colored and tasted rather vile. The GI cocktail ...

No one will ever be harder on yourself than you are. When I was diagnosed with AMPS a couple months ago I was told I needed to push through the pain. This idea was reaffirmed when I went to see the PT and OT at CHOP. This is what I have been doing. I have not missed a single class because of my health yet this year. Besides for when the Mobic did not work I have not gotten to the point where I have called my Rheumy. I have not missed a commitment or scheduled event. I am proud of all these things but at some point the pain started getting even worse this week, something had to give. I did everything I normally do plus put some of the anti-inflammatory fancy cream on a few joints. It is homecoming weekend, I was going to push pass this flare, I had to push passed it. Two weeks ago I had decided I was going to go out this weekend, yet here I am writing this blog post instead (not that I don't enjoy blogging but...). The past couple of mornings haven't been pretty. I have ha...

I have been so bad about updating this blog! Mobic did not go well, I only last about two weeks on it, then I switched to Celebrex. Celebrex is supposed to be the easiest on the stomach of all NSAIDs, well cause I am me that is not how it worked out. About a week or two into taking Celebrex my stomach pain got a lot worse, I actually thought I had an ulcer. It was not fun at all. So I went to student health services and had to see a nurse before I could get a doctor's appointment. Right away it was agreed on I needed to see a doctor as soon as possible, but the next available appointment was not till the next day. When I did see the doctor he was really great and prescribed Protonix to replace Prevacid, but did say if I have anymore stomach issues I need to see a GI specialist which I would like to avoid. He also confirmed that it was probably gastritis and not an ulcer but went over all the signs to look for. The doctor also said he would try to do some reading on NSAID induce...

First some exciting news, I get to wean myself off crutches! Basicly my PT has decided I can make my own decision, so right now I do not use them at all in the house and bring them with me when I go out, tomorrow I will have a day with a lot of walking but then I plan on definitely being down to one or none all the time. Heat then Ice and Stim @ PT (my favorite parts) Thursday I went to the rheumatologist. She thinks I had gastritis (which is the inflammation of the stomach) caused by long term NSAID use, which is what caused the horrible stomach pains. Currently NSAIDs still seem lie the best treatment option since we finally had found one that works. She decided to switch me from Prilosec to Prevacid for the side affects and restart the Voltaren, so today was the I took Voltaren with Prevacid for the first time and hopefully I will not get gastritis again. My rheumy thinks the two things that are my biggest problem right now are my crutches and how lax my joints are. She ...

This past week has been really rough, although my hip is doing really well. Last Tuesday I had my 2 week post op appointment. It went pretty well, everything looks good. The biopsy of the inflammation came back negative for RA. The OS mentioned I toe in when I walk, something which my PT has been telling me for 2 years. Still had to stay at 50% weight bearing for another week (which is disappointing because I thought since I started out with more weight on the leg then last time around I would get to wean sooner not later). I also got a letter to send to my insurance company to try to get them to cover more PT. Wednesday I woke up extremely tired. I took a shower and then went right back to sleep, I even fell asleep in the CPM, which I have tried to do before but never been successful unless I was still on narcotics. I woke up just in time for my weekly PT session, where I noticed my right shoulder hurt and my left ankle did as well. Thursday I went to college orientation, I had ...

Yesterday afternoon I went to the rheumatologist, then today I had x-rays, then OS, then the PT from HSS. I will start with the rheumy appointment. It was actually pretty uneventful because I am doing pretty well right now finally. The one thing we discussed was lowering the dose of Voltaren because of some GI issues. I am pretty reluctant to mess with the Voltaren at the moment, between my internship at a preschool, my nannying job, and prom coming up I really do not have the time/energy for a flare (not that it makes a difference). Since I have to stop 2 weeks before my hip surgery anyway I am waiting until after then to change anything. I was also given copies of my blood work from a week ago to give to the OS, so with any luck I could not have to get more pre-op blood test. Apparently they need blood tests from 30 or less before surgery, so the last test misses the window, but it was worth a try. At my OS appointment appointment we talked about the issues I had with the last ...

That is the question I am currently grappling with. (No I have not forgotten that I am 4 weeks post op but since I won't have an exciting update on that until tomorrow I decided not to bore you) Today I had a rheumatologist appointment. It was pretty routine. My left elbow hurt during the exam and that was not expected but has never hurt before or after so I am going to try not to worry about that. She commented on how much better my ROM was in my operated hip then my un-operated one. My last set of Lyme tests came back negative, so we have finally ruled out Lyme after the one false positive. Since my most problematic of my joints currently are my shoulders and my knees, which could just be acting up from the hip surgery as well the crutches, she wanted to wait to re-evaluate when I have been off crutches for a little while to see if they calm down. On to the Relafen thing. I told her about the fun side affects I had from Naproxen and she said I could go back on Relafe...

Before I had hip surgery I had been taking Relafen with is a prescription NSAID and it had a helped a little bit, definitely with my knees (along with the euflexxa). However I had to stop it two weeks before surgery. After surgery I was put on Naproxen, another NSAID, which is basically prescription aleve. While Naproxen does just as good of a job as Relafen, it can be harder on the stomach and more likely to cause problems. About a week after starting it I realized if I did not drink a full glass of water after taking it my throat would start burning, and starting a couple days ago I would drink two cups of water and eat food and my throat would still burn, even though I was even taking a prescription antacid with it. And I don't mean burn for a few minutes, it would for a few hours. After e-mailing with my OS's PA I was told to stop taking the Naproxen and I could take regular aleve if I wanted instead. Of course I have a really big debate tournament ...

I am done with euflexxa injections!! First thing I did today at HSS was go for right hip x-rays. Worst x-ray experience of my life. The x-ray tech kept trying to move my hip in ways it doesn't move, if it did move that way I would not have been there getting x-rays! Then it was off to the OS's office where the PA came in and asked me how I felt after the last injection and I told her I had the same symptoms as after the first she decided to talk to the OS before doing the injection. He came in to the exam room and asked me more about my symptoms, and told me while he had seen plenty of local reactions to euflexxa he had never seen a systematic one in about 5,000 injections. Apparently I am special. It was decided that it was worth doing the last injection even with the side effects.  There was a little less pain during the injection than the first two times, but the ten minutes after hurt a lot more than any of the injections, the first hour was just really painful i...

Yesterday I had my second euflexxa injection (supposed to be third but Hurricane Sandy screwed that up...not that I am bitter or anything). My last one is next week. The appointment did not take long, only about five minutes. My knee was sterilized, "numbed", and then I got the injection, which hurt as much as last time but at least I wasn't blindsided by the pain this time. After the injection my knee was more painful and stiff than last time. Even today I can't stand on it while it is extended. In other news I finished my six weeks of PT this morning, but I am sure I will be back in PT soon. And three weeks till the rheumatologist appointment. Update- I totally forgot to write about how I am feeling now...which is not good. I feel sick again, exactly the same as after my 1st injection. Even though I was told that is was just a coincidence I got sick after the injection I am sure it is not now, but since I only have one left and last time I was only ...

Last week went from bad to worse, as Tuesday night I got sick, and stayed home from school sick on Wednesday (and missed PT) but went to school sick Thursday. I called the OS's office to see if it had to due with the euflexxa injection, since there was no localized reaction it was probably just a coincidence. Now I feel better and my knee is still status quo, so we will see what happens after the next injection. I don't think I mentioned it in the last post, but the OS doesn't really want to operate on my hips at all currently, because the cortisone shot only gave about 50% relief. The final opinion won't come until after the Rheumatologist appointment, which seems like so far away. At sometime Monday Hurricane Sandy is supposed to hit CT and collide with a cold air front coming from the north as well as another storm coming from the west and crate "Frankenstorm." I keep hoping if I ignore it it will go away. While I have my college applicatio...