Update

Apologies to anybody who has been wondering how I was doing and if the Rituxan was working. I figure I owe an update. I had a very rough winter and was sick pretty much constantly. Either with colds, stomach bugs or then the actual flu in January. The flu really knocked me on my ass - haven't had the flu since I really don't remember. Luckily nobody else in my house had it but it caused a huge crash. Almost as bad as when I first became ill - was crawling across my house because standing was not an option. It really bummed me out because I felt like if the Rituxan was working I should not have been experiencing such a crash.  And really, by being sick for months it was very difficult for me to tell if the Rituxan was working as intended because I felt so horrible that I was not able to try and do anything to test my endurance or energy envelope.

I was supposed to get a 4th round of Rituxan in February but the night before I was slated to fly out my daughter became very ill and I had to cancel my trip. I was extremely stressed because my Dr. was leaving the country for a while and that meant I was going to have to wait until April. During the down time I had before April I really did some soul searching about this whole experience. I finally came to the conclusion that whatever benefits I was seeing (if any) were not worth the side effects and risks involved. So I have decided that my run with Rituxan is over. I've had 3 rounds and it's been 9 months since I started. And for me it seemed to cause much more problems than offer solutions. I may have had less orthostatic intolerance but I think it definitely contributed to me getting so sick over the winter and it also caused all sorts of pain for me.  I think I really struggled with deciding what to do because, as someone with an illness that is not going away, I wanted to do something. Just to feel like I was doing something about it. But again, for me, it was not worth the side effects nor the risks. 

I hope I'm just in the minority on this and that this pans out to help more people because God knows we all deserve some relief and another chance at the lives we left behind. I know that Enbrel is next on the Norwegian's list. Frankly I have no desire to be a guinea pig again right now even if I could persuade my dr. to prescribe it.

Do I regret trying Rituxan? No. If anything it's allowed me to come to grips with the fact that I have literally tried EVERYTHING I can and right now I'm just trying to settle into this illness and enjoy my life the best I can. That does not mean that I'm giving up but it does mean that I'm not lobbying my drs at the moment to try anything new and crazy. I think my body deserves a break after what it went through these last 9 months. It's frustrating as hell that everyday it's something new and at times it is overwhelming but I also know that there's not much I can do about it at the moment.  I can only pray that some answers are on the horizon for us all.

Round 3 update - and I think week 18?

Again, apologies for the delayed update. I had another blog started immediately following the third round (a week before Thanksgiving I think) but just have been sidelined with other things.

Treatment went as expected - I had steroids, benadryl, tylenol and fluids before starting. About halfway through the infusion I had difficulty breathing - or tightness in my chest. My husband flagged down the nurse and we stopped the infusion, had more iv benadryl and waited an extra 15min. Then we started right back up and got to my max of 350. All very normal according to the nurses. The one thing that was different is that my stomach pain (which had decreased dramatically) started flaring with about an hour left in the infusion.

I was more than exhausted the day after the infusion but rallied to get on the plane home that evening. Full recovery took me 3 weeks this time. I was really hoping for 2 weeks and it's not that the entire 3 weeks were horrible but really wasn't feeling 'better' until 3 weeks out. Nausea, fatigue, dizziness, weird feelings breathing (in the beginning). Stomach pain was tolerable and I felt like I jumped on top of it earlier with meds, etc.

In the past month I had a HIDA scan - which was completely normal.
But the biggest problem for me has been facial pain. I've dealt with a lot of horrible dental issues this year and about 3-4 weeks ago was woken in the middle of the night with horrific right jaw pain. It felt like it was really deep in my bone. Oxycodone did not touch it. But it finally went away and then a week later the same thing happened - and 2 oxys did not touch it, which made me nervous. I saw a quack of a dentist who wanted to rip out 1/2 of my teeth and do all sorts of surgery. But when I pushed him on things he back tracked...was just a sales guy. I do have serious TMJ issues but the facial pain I have never experienced before. It is like atypical trigeminal neuralgia in that it is unrelenting. It's gotten worse again and I've been playing around with lyrica. I hate being on it but it does help with the pain.

Overall though (except for the days when the facial pain has been incapacitating) I'd have to say that I'm doing more. What I mean by that is that I am doing more activities such as grocery shopping, appts, etc and not necessarily crashing or feeling like I need a 2 hour nap. That said, I'm not out running marathons and I did do about 5-10min of a kid yoga dvd with my daughter - felt fine that day/evening but the next day my muscles were really sore but not in a 'normal not cfs way'. So I still can't say that rituxan is making a HUGE difference but maybe it is.

Up this month is working with a neuromuscular dentist on getting my jaw in the right position. Seeing an atlas orthogonist (per this dentist recommendation).  Also seeing another biological dentist for a second opinion.
Started working w/ a homeopath and also just had an acupuncture session for facial pain.

Wish I had more to add...and just hating that I'm dealing w the severe facial pain since it's caused an addition of new issues and new drugs (lyrica) which make me feel out of it. Not what I need when I'm trying to feel less tired!

Will try to update again in a couple weeks.

Week 13 & Round 3

So after rescheduling round 3 I started to feel a bit better. Then on Sunday I felt really off - like I needed more steroids - and this only happens when my body is under a great deal of stress. All I could think was "great I'm probably going to get sick again"... lo and behold by Sunday night I was ill. Hard to say what it was - but I felt horrible like very achy and flu-like with some nausea. I did not sleep a wink Sunday night - my husband also felt horrible. On Monday I was really aggravated because I was set to leave again for treatment on Tuesday. I then found out that there was a horrible bug going around my daughter's school - 6 of 8 teachers had been out and about 1/2 the kids. It seemed to be what we had - adults were really achy and fluey with stomach issues and the kids seemed to get more out right vomiting.

Anyway I was completely stressed out but my husband reminded me that I've never felt great while going to get treatment so I decided to go. I flew out on Tuesday and was feelng slightly better. When I landed I found out that my poor daughter had slept much of the day at school with a stomach ache. So she got hit as well. My husband took a red eye out that night and met me Wed morning (the saint that he is) to take me to treatment.

So on Wed I received round #3. It went pretty much the same as last time -I started with fluids, steroids, benadryl & tylenol. Then about 1/2 way through my Rituxan infusion I started feeling like I was having a hard time breathing - this happened last time. They stopped the infusion and gave me more benadryl (which when given via iv also makes me feel a bit funky) and then let me sit for a bit. Then we were able to get the infusion up and running again. They were able to get the rate up to my max of 350 (I didn't like 400 the time we did that).

A difference was that this time my stomach pain started during the last hour of the infusion. I have been doubling up like crazy on ppi's and antacids trying to stave off any gi upset this stuff causes me. But I don't know if it's going to get really bad again - and I don't know when that would be. The first time it took 2 weeks, the second time was immediate because I was already in pain and this time...? Sort of nerve wracking not knowing when that pain will hit. 

That night I had a hard time sleeping as I knew I would (big dose of steroids makes me 1) angry and 2) have insomnia). I drugged myself with some benadryl though to get some shut eye. The next morning I was absolutely exhausted - thankfully the hotel was nice enough to give us a very late check out since our flight wasn't until evening. So I slept all morning and then pulled it together for the flight. Other than the idiot sitting next to us storing his clam chowder in the overhead bin for 3 hours of our flight (who does that??? and then eats it!!??) the flight was fine. I'm severely allergic to seafood though so was less than thrilled when he pulled down his chowder mid-flight. Seriously. Who does that?

Today has not been great - I'm glad to be home in my own bed and I know that it will take me a couple weeks to feel more 'normal' and I know that it's going to go downhill before coming back up. This morning I think I forgot that i had treatment - or that I should be taking it easy - and was up making breakfast, etc. Then I was very very tired and very very dizzy and just felt really icky. Some nausea and definitely breathing problems. So more benadryl, tylenol & a nap. This evening I was really having problems feeling like I could breathe. but benadryl is helping so my guess is that it's a reaction of sorts and hopefully in a few days will be on it's way. Not being able to breathe was my first symptom when I first became ill - so I hate feeling it. Just trying to remember that I need to give everything a couple of weeks and that I'm sure this next week is going to bring more worsening of symptoms and I 'll just have to deal with them.

On a side note, I spoke w/ my friend who works over at Genetech (on the oncology side) and was told that the protocol that I am doing - essentially every 3 months - is extremely common in oncology for maintenance. So it's not too surprising that a couple of oncologists were the ones who put together this protocol for CFS.

Round 3 Rescheudled

I barely slept last night and I'm not sure if it was because I was too cold or too hot, but either way when I woke up today I still felt horrible and very warm. I made the call to reschedule round #3 - I was not up for flying across the country to be told they wouldn't give it to me in my current state. So I have rescheduled for next week. Probably for the best but frustrating all the same.

Week 12 - and next round?

Just a very quick update. I'm supposed to be getting on a plane tomorrow morning for treatment on Friday. I say supposed to because I have been under the weather - we've all been fighting something in this house and I've pushed it this week. Today I was experiencing chills and just feeling really icky. I cancelled an appt with the new GI so that I could stay in bed. I'm still hoping to go tomorrow, just need to see how I am.

This past week has been ok - it was my daughter's birthday earlier this week so I had to pull it together for a birthday party / outing with some of her friends. That on top of shopping earlier in the day plus having chills. Some how I mustered through but am paying for it.

Abdominal pain has been decent/manageable. I was interested to hear what the GI had to say about it although I get the feeling I"m going to get some of "Rituxan??? For CFS??? That's a strong drug." Yeah well, CFS isn't exactly some little minor thing if you are really and truly sick with it. My appointment is rescheduled for next week and maybe that's a good thing because maybe I'll be in bad pain again from this round (I'm assuming it is going to cause worsening pain). 

Speaking of which it is very hard to get excited about doing something that you know is going to make you feel icky. Just trying to have faith...and hoping all goes well.

Week 9, 10 & 11

I am sorry I am such a slacker on updating here. I really regret putting this off so long. I've started and stopped this blog and it just keeps getting longer because more time has passed. I apologize for how long this is and how disjointed it might seem as I have written it at various stages in the past couple of weeks.

Had I posted 2 weeks ago I was going to post that things seemed to be returning more to my 'normal' and that I was going about my days as usual. I did start to develop a few more tiny painful blisters on my right ring finger (same finger as before) and this is about the same time frame as when the first round started - about 3 to 4 week post-infusion. Luckily they have not progressed and no more have formed.

Most notable from week 9 is that my crash from the motorized bike ride was short lived. At least by my standards. I had fully expected to be feeling it for a good week. Maybe I didn't overdo it as much as I thought I did or maybe I recovered better but I was down and out Saturday and figured I would need to be in bed all day Sunday as well. That didn't happen just because I had too much to do and then Monday I had appointments and had some errands to run. Surprisingly I did ok. I mean I didn't feel awesome - I never do - but I wasn't in a huge crash like I had been. So that was nice.

We ended up going out of town on Thursday with some friends for a long weekend. Before we left one of my teeth started killing me. I've had a horrible time with dental work this year, all brought on from long term steroid use. I've had to have 3 teeth pulled and about a dozen root canals. The tooth that was bothering me was a tooth that had been root canaled but which the pain had never gone away from and was getting much worse. I went to see the dentist (he did not do the root canals) who took x-rays and said it was possible that there was a small infection near the tip.  Because of my immune system he prescribed antibiotics and I made an appt w/ my endodontist to take a look at what is going on.  I wasn't too excited about taking antibiotics because of my stomach pain but spoke with my Dr. and she agreed that I should take them.

So off we went on our trip; the stomach pain wasn't horrible. I mean I didn't love being on the antibiotics but did ok. My family and friends did some amazing hikes. I found some beautiful places to sit and take in the view. here's a sample of what I was lucky enough to see.

One issue I had was that the altitude was slightly higher than where we live. I have a hard time with high altitude mainly due to my adrenal issues. That meant I had to up my prednisone a bit which wasn't ideal but again, I did what I had to do. One day I tried to join everyone for what normal people would consider a super easy and short hike. I probably walked about 1/2 mile all together. There was a short steep incline that was very difficult. It made me a bit sad to realize how out of shape I was with my heart pounding like it was going to leap out of my chest. I sat down immediately and was very worried about PEM but I just rested while they completed the hike and then joined me for lunch. No major PEM to speak of but I was pretty exhausted from the weekend in general.

My teeth/mouth pretty much killed over the weekend and I'm not sure if may have had something to do with altitude changes. On Tuesday I saw my endodontist about the teeth pain. He did not believe I had any infection and really feels like I am having an inflammatory response. Again, the Rituxan seems to be causing these weird things happen - just like the horrible abdominal pain with no real reason. Or the blisters on my fingers. I was then sent to the oral surgeon to discuss a bump I have inside my mouth and to talk to him about the pain I'm having. The bump seems to be a fibroma and probably isn't going anywhere. He really didn't see anything wrong with my teeth but I did have a new sore in my mouth that he prescribed some rinse for.

(In hindsight it could be that I was at a higher altitude over the weekend that caused pain in some of my teeth).

One of the biggest things on my mind has been when/if to get another round of Rituxan. My CFS doc thought it might be worth waiting to see if I respond at all before getting another dose. My endocrinologist thought I should go ahead with it. I got in touch with my prescribing doc at the end of last week and he thought I should get it now and then we can reassess.  So I've booked my next infusion for next week. If I'm being honest, I'm not all that excited about it. It's hard to get excited about something that you know is going to make you feel like crap. And again, if I'm being honest, it's hard to be excited about this treatment when I haven't heard a lot of positive stories.

This week my whole family has been sick. I've also been very itchy. All over. The bug we have is like a cold but with waves of nausea. My daughter was home for two days at the beginning of this week and I've just been extra run down. Saw my ENT as well who thinks I do have a sinus infection going on so was put on a different antibiotic. Saw my dermatologist who was not overly concerned with the itching although did say that theoretically when the b-cells start to repopulate they could be overly active and cause itching. he did not think that the timing was right for this (3 months post first infusion) but since we have not measured my b-cells it is hard to know. Told me to try a different antihistamine and see how I do.

My most persistent symptom has been abdominal discomfort. It almost feels like it could be my liver. Although all blood work and scans have been fine for my liver, where I hurt is definitely in the pattern of a liver. I see a new GI next week but doubt there will be any new news from that. Hoping just to have someone on board to consult if/when things get bad again as I assume they will post-infusion.


Also I've had joint pain - mainly in my hips/sciatic region. Off and on - mainly off. But definitely is only since I started Rituxan.
Today the sinus pain is feeling a bit better. Hopefully am on the mend.

Will leave you with something I saw posted on facebook today and really identified with. What other choice is there?

A crash and a Dr. appt

So I crashed from my bike ride. Hard. I am sure I overdid it - my husband seems to think we were out there for 25 minutes while I thought it was closer to 15 minutes. Thursday night I was slightly sore, especially my legs and sort of dizzy but not horrible. On Friday I was exhausted but went to my CFS doc in the morning, had to go shopping for a baby gift and was low on blood sugar so ate some crap while I was shopping, then had about 45minutes to nap and then had another dr. appt. I was really really tired but wanted to take my daughter to a festival at school last night so ended up going and being on my feet for about an hour. My legs started to burn and that wonderful feeling of horrible flu aches came rushing back. I was in bed relatively early but woken in the middle of the night by my daughter and a migraine and just feeling so horrible from my aches and pains. I couldn't go to her last soccer game this morning knowing I am now in a full on crash.

I did see my chiropractor this morning and we generally use low level laser pretty liberally on me - in some ways I'm her guinea pig but it's great because the laser can be nothing short of a miracle sometimes. Today we decided to just use it along my spine to see if that calmed down nerves for the rest of my body. I have to say my pain levels have definitely decreased since my appt with her - of course did nothing for the fatigue and rest of PEM symptoms but I'll take any improvement I can get.

I know it will take me a good week (if I'm lucky not longer) to get through this and I'm mad, sad, frustrated. I'm sure many of you are familiar with these feelings, both physically and emotionally. We are supposed to leave town for a few days on Thursday and I want to be able to function. Of course this week I have so much to do including getting a new license, more dr appts and then of course packing. I've pretty much resigned myself to bed for today and tomorrow and hope to see some improvement but I know really it's just going to take time.

As I mentioned above I met with my CFS dr Friday morning. We talked about my post-infusion symptoms and what my plan should be from here. Let me say again that my CFS doc is not the one prescribing the Rituxan but is helping me through this. Originally I gave my prescribing dr. the protocol from the new Norwegian study which is for infusions week 1, week 3, then month 3, 6, 10 and 15. My CFS doc recently had another meeting with one of the Norwegian docs and again it was reiterated that responses were not seen until 5 months. We discussed how it might make sense to just not get the infusion @ 3 months and wait and see what happens around 5 months then can make a decision about the 6 month treatment.

The thing is, apparently there is data showing a clear inverse relationship between B-cell levels and clinical responses. So as b-cells come back, so do symptoms. Which means that this could be a lifelong commitment to Rituxan or something of the sort to keep b-cells or autoantibodies at bay. If that is the case, it is worrisome to me thinking about the # of infusions long-term as chances for serious side effects (PML) increase. For that reason I was thinking about not doing the 3 month infusion and then just repeating at 6 months like in MS or RA. However, upon reading about the protocols for these other autoimmune conditions, I realized that they do 2 infusions again at 6 months. So technically it's the same amount of infusions - and to be honest I don't really want to do the 2 infusions close together again as they were difficult. Of course it's possible that it might be easier next time, particularly if I am feeling better by then.

I have been wondering why the Norwegians have decided to try the protocol they chose, particularly because it seems very unique. That is, there's a definite protocol for lymphoma patients and when it comes to autoimmune conditions they all pretty much seem pretty similar; 2 infusions, 2 weeks apart, repeated at 6 months or as long as the patient's markers suggest. Or sometimes they do once weekly for 4 weeks, which is more similar to lymphoma's protocol. Of course we don't have biomarkers yet. But why the infusion at 3 months, then 3 months later? My CFS doc didn't have the answer but hypothesized that maybe they were trying to clamp down on the B-cell population anytime it reared its head and maybe to permanently stop them from coming back. But if that were the case why wouldn't they do that with MS or RA or Wegener's?

The overwhelming takeaway from my appt is that nobody knows. About any of this. There are guesses being made and that's great, but this is completely experimental. There is no 'right' protocol yet. I'm clearly not a responder yet (as evidenced by my oh-so-fun recent crash) and only hope that I will be. But what is the right way to go about it? I don't know. My CFS doc doesn't know. I will be calling my prescribing doc to discuss his thoughts but my guess is that he doesn't know.

This is complicated. I guess nobody ever said it was going to be easy but the reality is that any of us trying Rituxan right now are really guinea pigs. I will most certainly continue to hope for the best but now have a decision to make as far as when to do my next round.

Oh and for anybody interested, I haven't had any more 'incidents' at night :) Seems to have been a one time occurrence. I told my CFS doc about and their thought was that my bladder could have been inflamed and that caused the discomfort I was feeling as well. Inflamed from what? Probably Rituxan :) Seems to have caused all sorts of inflammatory responses in me, so why not???