Tuesday, September 30, 2008

TPMT Blood Test

The blood test for TPMT is also known as Thiopurine s-methyltransferase. It's a liver enzyme important to the metabolism of azathioprine (Imuran), and 6-mercaptopurine (6-MP).

Each person’s ability to metabolize thiopurines through the liver is different. I've read that it is only known to affect caucasians. The majority have no problem processing Imuran. However, a very small percentage have almost no ability to do so. One article says, "with 0.3–0.6% having very low (negligible) activity and approximately 10% having decreased activity compared with the remaining population.

Apparently, I fall into the 10% category, as my test results were
called Intermediate. I am so GLAD I was tested even though the chances were minimal.

The test is ordered when patients are about to start treatment or if the patient is having side effects due to TPMT deficiency. The test identifies those at risk of developing severe side effects such as lowering of blood cell counts.

If regular dosages are ordered, a major deficiency of TPMT can usually cause life-threatening bone marrow depression (myelosuppression) This happens because the drug builds up a toxicity in the body due to the lack of metabolization.

When a patient has no TPMT enzyme, then the prescription will have to be changed to something else.

When a patient has a low blood TPMT activity the risk of less serious side effects are more likely just hair loss, stomach pain, diarrhea and inflammation of the pancreas.

If a patient has normal blood TPMT activity then then they can take a standard dose of a thiopurine drug.

When at the lab, I didn't understand why the technician said it was a Prometheus test. But, take a look at this site and you can learn about it.

I am slowly reading through what I can about TPMT and it is scary to realize how close a call this Imuran could have caused. But, seems I am being looked after, as I am still here.

Monday, September 29, 2008

Good News... Bad News....

I have been taking this immune modulator drug, Imuran, for a month now and my OLP is much improved, very much improved!

Unfortunately, I have been getting more flu-like symptoms recently and got to the point that every night after taking my pill, I got no sleep because of severe nausea, and I don't mean an upset stomach, I mean the kind where you wish you weren't face to face with the "throne".

I thought, well, perhaps it was just something I ate, but as it continued to worsen, I stopped taking the Imuran and had a good night's sleep. Take the pill again, no sleep. Stop taking pill... sleep. Doesn't take a genius to figure out it's the Imuran. Called my doctor in San Francisco today and told her what was going on. I just saw her on Friday. She told me to stop taking the Imuran, not just temporarily but permanently.

Blood tests reveal that I have a rare condition which is definitely NOT good for patients who take Imuran, in fact it could result in death according to some of the medical articles I have been reading. Yikes. Glad I had the test! Glad we have the results! I do wish we had the results before this! But, that's my fault. I had the orders, just didn't go to the lab to be tested right away. Live and Learn.

The test? It's called a TMPT. Now I gotta go research this more than I did the first time.

So, now I shall rest up, get some electrolytes down me and get well and start all over again with whatever is next to come along.

Monday, September 22, 2008

Tight Rope Performance

The meds, the combination of my meds, I should say, are a little difficult to keep up with. I've had some noticeable, annoying arrythmias (heart palpitations) since the end of July. I kept thinking that maybe it was due to the prednisone, and figured it will stop as I go off of it. But, the dosages is now down to 5mg. Last week I had some really intense ongoing palpitations (or whatever they are), that lasted a long time. It was exhausting!

So my doctor sent me to a cardiologist for a work up. I also kept wondering if it was caused by anxiety. But, I noticed that taking tranquilizers had little effect. At the Cardiologist's office an EKG was done. Funny, I forgot to even ask what the results were! I should have taken someone with me! Now I have to wait until the follow up appointment to learn what is going on. Couldn't be too serious, or they would not have let me go home.

I have an ultrasound scheduled this week. A heart monitoring device sort of like a Holter Monitor was ordered for me. I wear it on my chest and it measures the way my heart beats. Apparently, the information is sent to some main computer where it is analyzed and a report is sent to the doctor. I have to wear it for two weeks, unless I have an episode that gets them worried. I don't think it is that bad, but I would very much like to have some way for it to stop bothering me. I'm sure many would describe it as having a bird in a cage flapping to get out. Well, I describe it as a monkey shaking the cage door and throwing himself up against it, too. Then, too, the monkey will just sit there tapping his finger in an irradict out of synch way. Tip, Tap, Tappity, Tippity, Tappity, TAP TAP TAP!!!

The cardiologist, though, was more concerned, it seemed, for my liver. The Imuran is metabolized by the liver, as so many other drugs are, but right now I have a bit too many all at once. And my Alkaline Phosphatase is above normal. So, I have spent the last several days researching each medicine I am taking, to learn how they metabolize. Most of them are through the liver. So, I am trying to figure out what other medications I might be able to substitute. For example, there were some prescription eyedrops I was taking which are most definitely contraindicated. So I have stopped them. Happened to see my eye doctor today for my annual exam (how convenient) and he agreed that I must discontinue them. I hope it will stop eye pain that I have had recently.

I have discussed all this with my pharmacist and she is quite helpful to figuring out what other drugs will possibly substitute for the ones that increase my liver counts. I have appointment soon with my primary care doctor, and I intend to see what she suggests. She knows a lot about chemo drugs as she is an oncologist, so hopefully this will resolve the issue.

In the meantime, I have also done some research to learn what nutritional supplements will be helpful also. The one I had taken for years, (Milk Thistle) I had been out of for some time, and careless about replacing. I guess I should not have let it go, because that is the number one, most important one to take to detoxify the liver according to those who research such things.

There are certain foods I will be including more in my diet and some I will eat less of, and some I will forsake entirely.

My white blood cells have dropped below normal. I didn't realize all this would happen so fast. My lymphocytes are the lowest. I haven't had time or opportunity to do much research in this category. I wonder if I were to take a prescription to increase my white blood cells, it would increase my immunity. If so, then I am defeating the purpose of taking the Imuran. And I do not want to suffer any more Oral Lichen Planus if I can prevent it!

Life's a balancing act, and I'm performing with two trays of prescription meds, an electronic heart monitor and a bum leg!

Friday, September 12, 2008

Burning Mouth Syndrome

Today Lady Teelah (great name!) wrote a comment regarding my post on Prednisone Psychosis.

See her comment here.

She mentioned her own autoimmune disease as well as concerns for burning mouth. I hadn't heard of that before so I googled it and found some articles. One produced by Mayo Clinic had a list of causes for Burning Mouth Syndrome which I am including here. Many of these surprise me.

* Dry mouth (xerostomia), which can be caused by various medications or health problems.

* Other oral conditions, such as oral yeast infection (thrush), oral lichen planus and geographic tongue.

* Psychological factors, such as anxiety, depression or excessive health worries.

* Nutritional deficiencies, such as lack of iron, zinc, folate (vitamin B-9), thiamin (vitamin B-1), riboflavin (vitamin B-2), pyridoxine (vitamin B-6) and cobalamin (vitamin B-12).

* Dentures. Dentures can place stress on some of the muscles and tissues of your mouth, causing mouth pain. The materials used in dentures also can irritate the tissues in your mouth.

* Nerve damage to nerves that control taste and pain in the tongue.

* Allergies or reactions to foods, food flavorings, other food additives, fragrances, dyes or other substances.

* Reflux of stomach acid (gastroesophageal reflux disease) that enters your mouth from your upper gastrointestinal tract.

* Certain medications, particularly high blood pressure medications called angiotensin-converting enzyme (ACE) inhibitors.

* Oral habits, such as tongue thrusting and teeth grinding (bruxism).

* Endocrine disorders, such as diabetes and underactive thyroid (hypothyroidism).

* Hormonal imbalances, such as those associated with menopause.

* Excessive mouth irritation, which may result from overbrushing of your tongue, overuse of mouthwashes or having too many acidic drinks.

Monday, September 1, 2008

My Only Hope?

I've been on the immune modulator drug, Imuran, for about ten days now. Some call it a Chemo drug. Apparently, it is sometimes used in cases of Leukemia. My primary care doctor (an oncologist) wrote a prescription for the Imuran at the recommendation of the mouth specialist at UCSF. My erosive oral lichen planus is now "intractable", I think that was the word used. Therefor this drastic measure. I could be on this drug for up to 8 months, if it works correctly. Apparently it has been quite successful for others with OLP. In the meantime, I will continue on the Prednisone, titering down to lower and lower doses.

My mouth is already getting better, the gashes on the sides of the tongue are healed. What a blessing! That's about it for right now. Still a lot else is going on.

The effects of the Prednisone, racing heart, sleeplessness, feeling crazy, are lessening as the prednisone is being titered down. So, I'm feeling better in that category. On the other hand the bone and arthritis pain is coming back. The swelling around the benign bone tumors near my right knee on the tibia and femur has started back up again. I won't be able to have the surgery that my local orthopedic doctor wants to do. I have to be off the Imuran. It lowers the immunity and makes one susceptible to all kinds of things. Not a good time to do surgeries. The Ortho Doc talked about removing the tumors and fixing the torn meniscus.

Imuran is also known as Azathioprine. From what I understand, it's normally used to prevent rejection of transplanted organs, autoimmune conditions like, Colitis and Chronn's disease, and for cases of severe arthritis that do not respond to other therapies. And in my case, the erosive OLP.

I've been told that possible side effects are nausea/vomiting, loss of appetite or diarrhea. I have not had any of these, so far, unless you want to count the lack of ravenous appetite that the prednisone was causing. Okay, so that is "loss of appetite". Isn't it?

Imuran can be very nasty. Apparently in very very rare circumstances (the percentages are very low) it can cause Leukopenia and Lymphoma, among other kinds of "neoplasias".

So the Risk/Benefit ratio is a high one. Either I suffer from a mouth that a dragon has fired into, and all the flu-like symptoms that come with it, and the arthritis bone pain all the time. Or I can have the side effects of the Imuran and Prednisone for the next 8 months.

I'm really feeling quite desperate. To quote Princess Leia Organa, "Help me, Obi-Wan Kenobi, you're my only hope!"

Always seek the advice and supervision of a qualified licensed medical professional!

The information provided on this site has been created as an online journal only. The author is writing from her personal viewpoint and cannot guarantee the completeness or accuracy of the information displayed.

Comments to any of the entries are appreciated.