A few days ago I announced via Facebook that I’d be running a “Prednisone Survey” which was actually just some questions about people’s use of prednisone/prednisolone steroids while fighting ulcerative colitis symptoms.  What I had no idea about was how many people would actually be interested in participating in this sort of survey.  But it makes total sense, so many of us who are diagnosed with ulcerative colitis end up dealing with prednisone as a medication at some point in our life.  As it turns out, there are people from the prednisone survey who have been dealing with Colitis for over 10 years and using prednisone for about half that time! That’s unbelievable to me, I don’t know how they can continue on that medication for so long especially considering the side effects that it has.

Some of the questions from the steroid survey were based on side effects that people noticed and that list is quite impressive.  Many people had very similar if not identical side effects, which was not surprising.  Also, many people noted that the side effects did not always go away as was the case for the overwhelming majority of prednisone users. A select few seem to be still dealing with either the medication or the side effects.  Some women report increased facial hair, others reported rapid weight gain, and many others.

I would encourage anyone to read the full results at IHAVEUC which you can find here:  PREDNISONE SIDE EFFECTS SURVEY.

For all of the patients who are testing out different medications to help and treat their ulcerative colitis symptoms, there might come a time where you are prescribed Remicade.  This is a very strong immune suppressing medication that is often prescribed to UC patients when other medications like steroids, and Asacol, Colazal, Sulfasalazine and several others are not helping.

After taking a remicade infusion, it is administered much the same way as other infusions and chemotherapy drugs, you very well may notice positive affects within just hours or a few days.  Other patients it takes several days to notice positive effects from Remicade.

For another group of patients who use Remicade, there are no positive affects and remicade does not work on their ulcerative colitis.  This group of patients often visits with a gastroenterologist who will talk about other treatment options, a common treatment at this point is called Humira.  This is another immune suppressant which works in a similar way as Remicade.  Some patients who do not have good luck with Remicade have better luck with Humira.

At this point though, everything is going to depend on the patient’s symptoms of colitis.   If the patient is very severe with their symptoms and is feeling horrible and there is a fear from the doctor that the colon might rupture, there is always a possibility of having surgery.  And, this possibility is not a negative one.  In-fact, most patients who do have surgery to remove all or part of their colon are so happy afterwards, they wish it happened long before.

One other option that has not been talked about yet is a much more simple option.  It is the use of a radically different diet to treat the ulcerative colitis symptoms.  Many people have found that by simply eliminating certain types of foods, they can begin to control the bacteria that is causing the problems within the colon walls.  Eliminating things like breads and alcohol for example along with certain dairy products has proved time and time again useful in treating ulcerative colitis.  You can read more about these types of diet options at http://ihaveuc.com/the-diet.

It is pretty difficult to say there is a standard situation for anyone who is getting ready to try a new medication to treat ulcerative colitis.  With Remicade, that is definitely true as well.  In reviewing and looking at all of the different stories from people living with UC and also taking remicade to control symptoms, there are so many different outcomes.  Many people who I follow say that Remicade was the wonder drug for them and it helped them finally achieve remission from their UC.  Other people have mixed results and yet other people do not receive any benefit from the drug therapy.

For quite a few ulcerative colitis patients who are using Remicade, one relatively common response is with regards to the timing and requency of the infusions.  Many people say that their symptoms seem to relapse before the are scheduled for their next infusion and that once they get the next infusion things get better again.  Some people in the medical community believe that patients build up an immunity to Remicade and that is why the benefits are sometimes not forever.

If you are one of those types of patients who is having symptoms re-occur in-between infusions, you should definitely let your doctor know.  There might be something they can do to speed up the frequency of treatments which just might help you avoid the feeling of a new ulcerative colitis flare up taking place.

Back in the early days after my Ulcerative Colitis diagnosis, I was getting ready to take a ton of different drugs to help treat my disease.  I surely had no idea of the long list of medications that I would eventually try, and I also had no idea how long each one would be in the trial phase either.

When the months kept on moving along and the “current” medication wasn’t proving useful for me, I found myself prescribed Humira for my colitis symptoms.  I must admit, my memory is a little bit foggy, but I definitely had some joint pain which might have been arthritis problems previously, but it was very minor and nothing that restricted my upper body movements.  That would all change pretty quickly after starting to take the Humira injections.

It was just a few weeks into the medications that my joints in my upper body and mostly my arms and shoulders and chest became so inflamed that it was very hard and painful to move at all.  I felt like I was not just walking but living on eggshells all the time.  One wrong movement could send me into some pretty severe pain.  It was only the Vicodin pain medications which gave me relief from this.  And of course all along my UC symptoms were raging on pretty nasty as well.  What used to be a simple task of going in and out of the bathroom for my one of many bowel movements each day was now a majorly painful task to complete.

It was a very strange time in my life.  Trying to fight off one auto-immune disease and then realizing that you are actually fighting off arthritis which is another similar auto-immune disease is tough.  I wish the Humira had helped my symptoms more, but in the end, I decided along with my gastroenterologist doctor to stop the medication completely.   I think it was a good decision, who knows what I would be writing about if I continued.

Some related links:

Humira posts

Joint Pains with UC

What is Worse:  Ulcerative Colitis Symptoms or Acne?

For so many people both young and old, the medications that are given out for ulcerative colitis often come with some nasty side effects.  One of the most well known medications for UC is prednisone.  This is a steroid that is given to patients who need to calm down inflammation quickly.  Prednisone is a drug that has been around for many years and its side effects are well documented.

Acne from Prednisone Steroids:

Often when people are prescribed prednisone, they take the medication on a tapering schedule.  The cortizone which is a major component of this drug is usually produced within our bodies.  Once we start taking the steroid pills though, the production starts to slow down internally, and that is when some side effects can take place.  Most people start to develop acne and sometimes it can be severe, but usually it begins when a person starts to reduce their intake of steroids.  It is not clear as to why the acne gets worse when someone is slowing down their steroid use, but it is very common.  The worst place for steroid acne is on the back, and its common for a bad case of steroid acne to be literally thousands and thousands of tiny red dots spread all over the back.  Another part of the body which can experience very severe steroid acne is the chest.  Fortunately, the neck and face is usually not affected nearly as bad with acne as the back and chest, and most people are very happy about that.

Steroid Acne Does Stop Eventually

When the person taking the steroids is eventually through using the medication, the steroid acne almost always goes away completely.  This often is the same time that the person’s ulcerative colitis symptoms are getting better too, so it is a joyous celebration for some.  Steroid acne is absolutely no fun, and it is hard to deal with when there is an underlying medical condition that is being treated with steroids.  After just a short while though, things tend to work themselves out and get better.

Rashes From Humira

There are new study results being published that are showing a link between rashes and skin lessions and the medicine Humira.  Similar study results are showing the same type of skin rash from the medicine Remicade.  There are not very many people who develop these rashes, but when they do come on, they can be very difficult for patients to control in the short term.  Often, the need to continue taking the Humira is so great that the patient must suffer through the skin rash for a short amount of time.

In the majority of patients who did experience a skin rash or skin irritation after taking Humira, the skin problems and rash did go away after the medication’s use was discontinued.  Within two to three months, most of the skin rash that developed previously had almost completely disappeared or gone away.  There was only one reported case in a recent study that showed the rash remained even after the use of Humira was stopped.

One of the stranger skin rashes that has occurred from the use of Humira is the small bumps that have developed on the scalp of several patients.  These bumps are like small or sometimes larger acne bumps, and they tend to be just around the hairline.  Dermatologists have been struggling to figure out exactly what these bumps are, but they appear to be similar to psoriasis type bumps.  As with other skin rashes from Humira, the bumps also went away once use of the medication was stopped. Most skin rashes will go away within 1-2 months of stopping the humira.

The full understanding of Humira is still unknown to scientists and researchers.  The medicine has proven very helpful to thousands of patients who have used or are currently using it.  There are also many people who will benefit from Humira in the future, there is no doubt about that.  What is hard to figure out is why it is causing such strange skin problems in the small percentage of affected Humira users.

Tapering Prednisone

The prednisone taper is going great.  Of course I am cautiously optimistic at the same time.  We all know what it is like to feel a few symptoms after stopping a medication that you’ve been taking for a while to heal your colitis and then suddenly feeling like a fish out of water when you stop them completely.

Either way, I am super excited this time about getting off the steroids.  It has been over a week now of very normal bowel movements with only some slight red blood on the toilet paper from suspected hemorrhoids.  If things keep on this track, I think come  Saturday or Sunday I will drop down to just 7.5mg per day of prednisone.  I started taking 15mg/ day a few weeks ago so things are going actually ahead of schedule.  I have also noticed that since getting down to 10 mg per day, which is where I am at right now, my sleeping pattern is getting a bit more normal.  I have been sleeping through until 6:00am most mornings and that is great.

It is such a mind trick for all of us ulcerative colitis patients to get on and then come off the prednisone.  It is a wonder drug in terms of its ability to quickly calm down inflammation, but we all know it is not a long term solution.  The effects of using steroids for lengthy amounts of time are documented to cause all types of serious problems.

My good news to report is that the flare I was experiencing just a few weeks ago seems to be leaving, and the prednisone tapering is going well also.  I hope the next report continues in this general direction.

Can Prednisone Put Ulcerative Colitis Into Remission?

For the past few months, I have gradually began to notice the signs and symptoms of ulcerative colitis creeping back into my daily routine of life.  It has been a very slow progression of symptoms, one that people with UC come to know all too well.  Especially if you have been managing the disease for several years like me.

It has been a very constant mental battle, do I make an appointment to see the doctor, or should I just try to wait this one out like several times before?  What is the doctor going to prescribe to me if I do see him, and will there be any side effects from whatever that medication is?

In all of the reading of other people’s experiences who also suffer from UC, it seems that prednisone often is the common denominator in terms of the medication of choice when you are in a flare up.  There are doctors who like to prescribe antibiotics, and other medications too, but just by the numbers, my sense is I might be staring down a steroid pill pretty soon.  While there must be good reasons for this to be the go to drug while in an active colitis flare up, there are all kinds of people who simply will not take it, or at least refuse to try it until they absolutely have to.  This makes me worried.

Stopping Colitis Symptoms

Several years ago, I was in the middle of a very long several year flare up.  I can remember having a bottle of prednisone steroids in the medicine cabinet constantly.  I also remember going to the local pharmacy and filling up new prescriptions of them quite often too.  When I look back at those days now, I can recall that my side effects were really not too horrible compared to the horror stories of prednisone that other people mention.  So, what am I so scared about?  I guess it is the being scared of the unknowns.  Has anyone ever had good experiences(meaning not awful side effects) with prednisone the first time and then horrible side effects afterwards?  Also, what if the prednisone steroids don’t get my ulcerative colitis into remission at all?  Then what is next?  When I sit here and write about these thoughts, I think I’m most scared that the medications will not help out my symptoms and then I will be facing the decision of trying another hardcore drug.  I think it is time to take a chance with some medications once again, and then slip back into the diet program that worked so well for me before.

Humira and Remicade Study

There is an incredible new study that has just been released which documents many different patients who live with IBD and have used either Remicade or Humira to treat their symptoms.  The study was examining one of the now known side effects of this biologic medication which turns out to be related to the skin.  In a small percentage of people who use the medications to treat their IBD, eczema and other psoriasis like skin conditions have occurred.  What is strange is that with a large amount of the patients sampled for this study, there was no known family history of these skin conditions.

Psoriasis and Eczema:

Both of these conditions are usually very uncomfortable.  Some of the normal places to have this skin disease is on your hands, feet, and scalp.  It is most definitely possible to also have psoriasis on places like your back, chest, and genital areas too.  With psoriasis, the skin becomes to get flaky and often times it will crack open and start to bleed.  Although there are varying degrees of psoriasis, it is not very un-common among other populations of people who do not have ulcerative colitis.  Eczema is also another disease which is similar to psoriasis.  The differences in-fact often are not documented too well and some doctors can even confuse them.

Treatment Psoriasis after Taking Humira and Remicade:

If a patient is dealing with very severe skin problems from the anti-TNF medications (Humira or Remicade), often they will want to stop treatment entirely.  This is a good and bad news situation.  Almost always, the skin problems will go away once someone stops treatment.  But, that leads the door wide open for the inflammatory bowel disease like ulcerative colitis to start acting up again if it goes untreated.   Most patients take these biologic drugs because all of the other medications failed to work properly.

The Study was completed over in Europe and was just released a few weeks ago.

Earlier today I noticed someone had made a comment on a humira related blog post from before. What was so interesting to me was how this person also complained about the itchy scalp that came along with taking humira.
That is the one of the strangest side effects that I had from that medication too. Actually, I had quite a bit more itchy places than just my scalp, but the scalp was sure one of them. For quite a while I was beginning to just think it was going to be added to the list of things that I would need to just deal with for the rest of my life. I was getting used to the ulcerative colitis symptoms, and now another thing on the list as minor as an itchy scalp was not that big of a deal. My friend told me about a shampoo which he used for itchy scalp that has tar in it. After researching it for a while, I decided I would give it a try and see if it was able to help me out as well.

This is the shampoo that I ended up using to help my humira related itchy scalp and it has worked wonders for me so far. I have only been using it for a year now so I can’t say yet what things will be like several more years from now, but I am remaining hopeful that the itchy scalp has gone away forever.

The most common treatments for people who have a colonoscopy that shows signs of ulcerative colitis are:

1. Doctors prescribe Prednisone which is a anti inflammation steroid
2. Doctors might also prescribe Asacol(which is a 5ASA drug)
3. Doctors might prescribe an enema(which has medications in it)
4. Doctors might prescribe Sulfasalazine or Colazal (both tablet type medications)
5. Doctors might recommend that you change your diet(only if they believe in alternative medicine)

The most common protocol seems to be prescribing medications to patients who show signs of ulcerative colitis.

If you have been recently diagnosed with colitis, don’t panic. There are hundreds of thousands of people on the planet who have the same situation as you.  The colonoscopy is a great medical invention, and something that wasn’t around 100 years ago.  So be very thankful that you are able to go inside your colon and see what it looks like.   This is something that can be treated in a number of different ways.  Medicine, diet changes, and even in severe cases- surgery.  There are positives and negatives to all of them, but that is how life is.

When Asacol is not working to treat your ulcerative colitis, the next most common type of medication that most doctor will prescribe is either:

1. Lialda
2. Sulfasalazine
3. Colazal
4. Prednisone

These medications are all very similar to Asacol, but sometimes patients may not respond to the Asacol but will to something else that is similar.  The exception is prednisone which is a steroid type of medication.

What everyone should understand is that it is very common for UC patients not to respond to the first medication that they try out.  Many people will use 3 or more different medications before they find one that works for them.  That is one of the reasons why your doctor is so important to be working with and asking questions frequently.   Medications are not going to work everytime for every person, so be sure to communicate regularly with your doctor and ask them your questions.  They should be the person giving you medical advice all the way through your UC treatment.

If you have been prescribed Humira and need to stop taking it, make sure to speak with your doctor.  Humira as you know is a very strong medication that affects your immune system in many different ways.

Many people decide to stop taking Humira for the following reasons:

1. Cost is too expensive
2. They have improvements in their condition
3. No improvements in condition are noticed
4. Side effects are not worth the benefits
5. Want to try another less powerful medication

The best thing that anyone can do when attempting to stop use of Humira is to speak with a doctor who has worked with other patients in this condition.  The decision to begin using an immune suppressant drug is a big one, and the decision to stop using one is also a big one.

There are several different biologic drugs or hardcore top of the pyramid drugs that are used to help ulcerative colitis patients these days.  One of them is called Remicade.

If you are taking this medication and you have ulcerative colitis, I am guessing your situation is rather severe.  At least it was for me when I was prescribed the medication and went in for my infusions.  This drug is just that, a hardcore immune suppressant drug.  Its goal is to turn off part of the immune system that is over-operating and allow the colon to heal itself.  It is common sense that when anything is given to you by way of infusion, it is supposed to start working really quickly afterwards, as in instantaneously almost.  Well, not in an instant, but pretty quick.  I am guessing there is a reason why heroin addicts shot needles in their arms all day long and don’t pop some pill that takes a while to activate.  Same idea with Remicade.

For me, I went from VERY severe, ten to twenty bloody craps per day, all the way down to just a couple formed/partially bloody stools in 24 hours.  And much of the other symptoms became much less severe within a few days as well.  But, of course the symptoms were not 100% GONE in just a day.  It’s all relative.  When you go from 4 hours per day on the toilet to 35 minutes, its a life changing thing taking place.  Nothing short of a miracle.

From nearly all of the other ulcerative colitis people I have talked to who have also taken Remicade, they have had very similar experiences.  About 60% of them have had positive results from Remicade initially, and the results came pretty early, for sure within the first few days.  There were other people I must add who did not respond to the medication, and that is normal.  Not everyone responds to every medication out there.

To answer the question, and until I hear other stories from other Remicade users that are different, results come very quickly from this type of infusion.  How long the positive results last is another story and another post.

One of the most common medications that doctors prescribe for ulcerative colitis patients is Asacol. This medications is a 5-ASA drug that is currently the only sulfa free medication approved to treat UC.  As far as the pyramid for treating UC goes, asacol is one of the less hard-core drugs compared to some others that are prescribed.

Unfortunately, not everyone responds well to asacol.  Myself for example did not have any positive response at all to the medication, and that is the reason why my doctor told me to stop taking it, and moved me over to take colazal which as well is a nother 5-ASA drug, and as well that one did not work for me either.

It is not really known exactly why Asacol can work form some people and not work for others.  As this medication is taken orally, and the medicine is supposed to be helping out the colon, there is always a chance that the medicine is digested before making its way to the colon.  The actual medicine though claims to have a delayed release so it will not be broken up until it reaches the colon…

At the end of the day, Asacol does work for some colitis patients, it doesn’t work for everyone, it is relatively side effect free, so if your doctor prescribes it to you, its a pretty safe thing to test out.  Or at least, I have not had any bad reactions to it, and have not met anyone who has gotten very sick from the Asacol pills.  If you are stuck taking this medication for a long time and are not seeing any improvement and are getting worse with your colitis symptoms, definitely talk to your doctor about it.