Remistart -ed

Nothing I had tried with my doctor had worked, so now I am starting Remicade infusions. Hindsight is 20/20, I could have saved thousands if I had just started Remicade a couple years ago. I've spent a ton trying different medicines while being covered by poor health insurance and high premiums.

Remicade is pricey too, the 'bag' for the transfusion costs almost $1,000. Fortunately there is a rebate program called Remistart , check it out if you are having trouble keeping up with all these costs like me. They actually send you a Mastercard debit card that they charge up for you so you can pay the transfusion center.

My first transfusion went quite smoothly. The nurse recommended I take Claritin or the cheaper generic alternative Loratadine an hour before coming in. I ended up not getting itchy but that is good to know. There were basically no side effects worth mentioning. What a relief! I've seen some improvement already in my symptoms and it's only been a few days. A nice change from some of the other meds I have tried. I go back in 2 weeks, then 4 weeks after that for my 3rd transfusion. Then ideally I will be in remission!

The One, The Only

A few weeks after I tapered off Predisone, my symptoms started coming back. =/

I am still on Balsalazide and Azathioprine, but they seem to have little to no effect on me since almost daily my symptoms have gotten worse. So it felt like I had the ever elusive 'remission' for all of like 2 weeks, which was actually just Pred induced.

I also take probiotic , turmeric and Omega 3-6-9 pills. All with no apparent benefit. So I assume I will have a tougher battle with UC than I thought.

I am looking into Chinese/alternative medicine to see if I have any luck with that. I will post back on how it goes.

Tough Progress... but Progress it is!

I've been on Prednisone and Azathioprine both for 2 months, I can't wait til I get to taper prednisone! The second medicine I will have to stay on a bit longer since it takes longer to take effect.

I've been doing regular blood tests, make sure your doctor wants you to, as well! These expenses add up but even if you have bad insurance like me it will be worth it if remission is achieved. I'd rather be broke and healthy; able to go out even if I have no money to spend... haha.

I've lived outside the US a bit and although socialist healthcare has plenty of flaws itself (fewer sharp people want to be a doctor when they simply can't make as much money doing it, et al.) those $4 doctor visits are easy to get used to!

These meds effect my mood, make my skin break out, increase nausea and sometimes make it hard to sleep.
I am quite hungry almost all the time, which has made me gain weight.

But most importantly my UC has almost cleared up! These last 2 months have been quite difficult, with the first 2 or 3 weeks being the roughest. Feeling sick because of the Rx every day has not been pleasant. Now I'll go in to see the doctor and see what we can do to get complete remission. I assume it will include tapering Prednisone, since I've been on it too long and it's done almost all it can do, and stay on Azathioprine until I am completely well. I can see the light at the end of the tunnel!

Prednisone and Azathioprine Side Effects

So the good news is that my required blood test 2 weeks after I started prednisone and azathioprine came out fine. Your blood should really be checked, especially if you start taking a double whammy of immunosuppressive drugs like me.

I've become quite the pill popper. I now take Colazal with each meal. This makes sense, to constantly keep it running through my system. Before I was taking it just with breakfast and dinner. I suggest making sure your doctor prescribes it for you to take 3x a day.

This week I will call pharma companies that make 5-ASA drugs and see if they can help me cover the cost of my medication. I will have to take 5-ASAs indefinitely, and the cost of Colazal is simply too high to do so, especially with taking it more frequently than before. I'd then ask my doc to prescribe the drug I found the discount on. I will post if I have any luck.

I'm drinking ginger apple juice to fight the nausea and trying all kinds of dark berry juices for the possible cancer fighting properties. Ever since my GI told me about azathioprine and cancer I've been buying more juice.

So... the side effects. There are actually some positive side effects. I've got bad arthritis in some of my joints. Azathioprine is sometimes prescribed to fight arthritis, this drug has kept my swelling way down. My joints sometimes feel like they did when I was 20! Good for lifting... sorta. Ha. Prednisone can be prescribed for asthma, it is easier for me to breath now when I work out and I never get light headed anymore when I stand up. It is nice to have some positive side effects...

But the negatives outweigh the positive side effects... this can be handled because overall the meds seem to be helping! Colazal made me nauseous, these meds more so. Sometimes much more so, that I don't want to look at food. Colitis is kind of a cruel joke to me since I can be a mighty eater. I do not have the energy to work out as much as I am used to, but I am grateful to get in the gym at least a little.

My vision has gotten quite hazy twice. I am happy this has happened only two times since this bothers me more than feeling sick to my stomach. I often get a light headache and usually feel off most of the day due to the new meds. It is harder to focus, on reading a book for example.

I am having decent success just concentrating on what the goal is: remission. This helps me handle feeling a little sick or like I am hungover throughout the day. Then I just get tired at night. The drugs also don't let me sleep as well. I often wake up way too early, and am wide awake when I do so.

*Possible TMI incoming...
Thankfully I can deal with this because overall my condition is improving! Trips to the bathroom are less frequent, with less blood. I am 'evacuating' (sorry, I thought it was funny when my doc used that term) more completely. Yay, drugs.

My Next Step in UC Treatment

I saw my gastrointerologist this week. He said I've gone from what he considers mild to moderate UC.  =/
Since the 5-ASA drugs are not working for me (Asacol, Balsalazide, etc) I've moved on to the next step.

The good news is that the next step isn't as hard on the wallet as I feared it might be. It is just harder on the body apparently, with stronger side effects to go with the stronger medicine. He prescribed Azathioprine and Prednisone for me, the first to be taken indefinitely and the second for a month. I must take blood tests every 2 weeks and a followup visit with the doc in a month.

He told me Azathioprine could cause cancer, but of course the chances are much greater I'd have more problems with UC if I didn't take this medicine. Part of the doctors job is to weigh options and set out a plan, I have confidence in him. It only cost about $20! I started taking it today and feel nauseous... as I expected.

Prednisone is serious as well. At least this one only costs five bucks. I have to take it before 9AM each day so I will start it tomorrow. I'll post later about what kind of effects I feel from the new meds. I am kind of concerned about them but more concerned that my UC has become even more limiting to what I can do than before.

Interestingly, the doc said I should stay on the 5-ASA drug indefinitely as well. It helps control my symptoms a little, so it makes sense that I would stay on it. I just wish it wasn't so costly as my insurance Rx coverage is not the best. So this one has cost me thousands and will continue to do so. That brings the drugs I am on this month to 3.

The doctor said it was fine if I continued to take aloe vera gel pills and fish oil supplements in addition to these 3 meds. He did mention that the fish oil could cause loose stools... which is ironic since I think that is the least of my concerns right now, considering the kind of symptoms that are common with UC!   :p

What should I ask the doctor?

What questions should I ask my gastroenterologist? More important, I think, is to actually take a little notepad in with you into the doctor's office and have it at the ready when the two of you are having a discussion. A simple thing I know, but chances are it is a costly visit for you and we all want to know the best way to get a handle on UC. I know I would probably forget a few questions and kick myself afterwards for it without taking some prepared questions in with me.

I have some questions prepared for my doctor's visit next week. I'll need to know what meds he will Rx, they will be new this time since Balsalazide Disodium is not helping us (the doc and I) reach our goal of remission.

Not something I was dying to put in the search box on my browser for, but I've heard people had success with a fecal transplant so I will ask about that. I also need to know if some of the bleeding is due to hemmorrhoids and if so, what I can do about that. Also, LDN. LDN is Low Dose Naltrexone, and something I've read that is in general effective, quickly. Sometimes I am severely constipated. I can swing from one extreme to the other, but I thought most with UC just stayed at one extreme. I need to ask about that as well, even though both doctors have told me modifying my diet won't help get UC into remission.

I think the doctor has a certain plan laid out for me if things keep getting worse. But this is my second doctor and things are not progressing as they both were hoping. I've poured thousands of dollars in to this already. So I will be prepared this time with a notepad and questions, ready for action as it were.

Donation for Ulcerative Colitis Research

I was thinking that as impressive and helpful as the current medicine available for UC sufferers may be, the research into UC is not complete. This is evident in people like me who find remission elusive, and are trying to get a handle on their symptoms getting worse instead of better. More research needs more money, and although because of my rising medical bills I can only donate so much, every little bit counts!

 I recommend making a donation to the Crohn's and Colitis Foundation of America. CCFA is approved by the Better Business Bureau, BBB. And of course, the donation is tax deductible! Since science and technology is advancing at such a rapid pace, let's hope researchers will continue to make progress in medicine, and maybe find the exact causes and a cure for ulcerative colitis.

 After all, if scientists can clone sheep and grow hair on bald mice using stem cells, almost anything should be possible!

What makes ulcerative colitis worse?

Good question! Anything that can be done to decrease these awful symptoms is worth trying. These 2 lists are for me in particular.

Top 5 Worse Foods for UC
Alcohol
Caffeine
Red meat
Soda
Popcorn

Top 5 Best Foods for UC
Avacado
Yogurt
Raisins
Bananas
Carrots


Others have reported that foods high in fiber or with seeds, like beans or strawberries, can make symptoms worse during a flare. I myself haven't experienced this, but everyone responds differently!

No Wayyyyyyy

So I got another giant medical bill this month. Over $4,000. I called up their office, I simply could not believe it could cost that much. And I have insurance!

I asked why it cost so much. I told them that four grand would be a huge financial burden for me. We went back and forth. More than 5 minutes in to the conversation, the receptionist mentions that if I pay in full this month, the bill would be half off. WHAT. lol. A special only this month, she says. Why on earth did she not tell me this earlier in the conversation?

Why is getting such a discount even possible? It just highlights how flawed the whole medical insurance / billing system is. People that don't call to wonder why they have such a huge bill wouldn't get this magical discount. If I started crying because of the four gees burden and had to end the convo early, I wouldn't have even heard about the discount! Amazing.

Boswellia Side Effects

I only took Boswellia for a few days but I could tell it made me way too nauseous and even gave me some chest pains / tightness. And my symptoms got worse, if anything. I had read 2/3s of people that take Boswellia were helped by it, but not me.

The side effects were such that I would really stress caution if you try to take Boswellia. Back to trying Rx medicine it is for me! The pills from a tree in India made me more nauseous than even the balsalazide. :(

Others have reported side effects such as sore throat and a skin rash. Boswellia helps with remission in many people, but take at your own risk! I wouldn't take it more than a month or 2 even if it was helping because of all the side effects that could come with it.

Naturally!

No Rx medications are getting UC into remission. I have just started to take Aloe Vera Gels and Boswellia. Apparently the Gels can become habit forming. I will be careful to not become dependent on them. I bought the brand that didn't have that warning on the label, but I will make sure I am aware of this anyways.

I have higher hopes for the Boswellia. It is extract from a kind of tree found in the countryside in India. It can help with UC, and could even help with arthritis, so if it is effective for a double whammy then I am all set!

I figured I should give some natural remedies a try, even though probiotics haven't helped me in the past. All the different Rx drugs I've spent thousands on haven't helped either that much, so I have nothing to lose!

Fail.

So the Cortifoam didn't help either. I am a bit disappointed that my doctor prescribed it actually. I read up on it, it is mostly hydrocortisone, which I had taken in a cheap form with a previous doctor. They just mixed it right up at the pharmacy for about $25. Cortifoam cost over $200!

Make sure to ask for cheap hydrocortisone mixed up at the pharmacy instead, if your doc wants to prescribe Cortifoam! Many pharmacies don't make their own stuff, but some do next to hospitals. And it didn't even need a prescription. But it is a steroid, so take care.

The doctor had my medical history. I should have checked before I bought the pricey Cortifoam, of course. But I think part of the job of the doctor is to not prescribe basically the same medicine that was shown to not work in my previous medical history.

Curious Cortifoam

I've been able to take Cortifoam, all I've noticed so far are the side effects.
I don't sleep as well, and feel bad for a while after I wake up.
I hope this works so I can stop taking it!
There are many other options out there for your doctor to Rx you, so I would recommend saving this for later if other things are not working.

Express Scripts

My insurance uses Express Scripts for prescriptions. I've been with Walgreens but they stopped accepting ES! Now I have to go to RiteAid, which I would prefer not to do. No matter what part of the country I've been in, I've always been happier with Walgreens over RiteAid. Doh.