Sikcell: People living with Sickle Cell

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The Same Pain, Stronger Medication Needed

Building a tolerance to your pain meds is common with Sickle Cell, but something I'm only starting to notice in myself. Now my history with Sickle Cell isn't all too terrible compared to some. I was often sick as a child with frequent hospitalizations for pain crisis. I've had Acute 3x and been hospitalized with the flu and pneumonia often as well. I also had my gallbladder removed. The majority of this happened to me as a kid and teen from 3-16.

I went through a period from the age of 17-21 I was the healthiest ever. During that time I had only two brief 2-3 day crisis that I was hospitalized. I didn't have the daily pain that I seem to have now, and even when I did have pain I could treat it with 600 mg Motrin, rarely would I have to use a percocet or vicoden a bottle of 30 could last me 4months. Now Motrin does nothing for pain, and is only used to pre-medicate.

I haven't had a change in dosage for my percocets in 3 years. And its only in the past 2 years that I've really been needing to use them. And It seems like I have to use them more often. It used to be that one bottle lasted 4months now a bottle lasts a little over a month. In the past year I've noticed daily pain and also a need in stronger meds for the same pain. Pain that 8 months ago I could take a motrin for requires a percocet. And something I would grab a percocet for now requires that I take 2. And this is where I say I am gaining a tolerance. I know I need a stronger prescription, especially since its been 3 years since my dose has changed. I know the risks of tylenol on your liver and motrin on your stomach. But I'm nervous about approaching my doctor for a stronger prescription.

I don't want to fall into the tolerance trap of needing more and more narcotic pain medication.

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Comment by Ali on March 15, 2010 at 9:21pm: I understand. Actually, our experiences sound similiar. I am protected by a high fetal hemoglobin. Therefore, by crisises are not as frequent and as bad as others. However, I have had chronic pain since 2007. I can't even remember how and when it began. At first, I saw other specialist and had lots of tests (MRIs, EMGs, x-rays etc.) then finally my hematologist said it is the disease. Now I take narcotic pain med every day twice a day. Now I am finding that I need more and it scares me. I am afraid of addiction, abuse. Everytime that I talk to my doctor he says that I am not abusing because I take it as directed and no more. I feel that it is due to aging. I am 42 years old. I know that I didn't say anything to help you. All I said was that it is happening to me also. Good luck and be well. May God bless you.

Comment by Maurice Lamount Alford on March 13, 2010 at 4:29am: I fully understand your concern about tolerance as my tolerance is very high. I remember when tylenol and t-3's worked for me as a child under 10 then as a teenager needing Percocets. Now I have chronic pain and avascular neucrosis and I require Oxycontin 240mgs twice a day along with gabapentins and Oxycodone 2 30mg tablets as needed for breakthrough pain. My pain specialist this month increased my Oxycontin dose from 160mgs twice a day to the current dose because I was eating 16 or more 30mg Oxycodone for breaktrough pain. I wanted to only take the Oxycontin as needed according to how I felt when I woke up and felt throughout the day but the pain specialist said to keep a steady amount of meds in my system since my pain level had increased dramatically. I feel that my tolerance is going up more and I have expressed this to my doctors but they keep telling me to take the meds as ordered until we get the pain under control then we can go down once the pain stops increasing.

Comment by Marcus McKinley on March 9, 2010 at 11:12pm: I take 10 of Lortab, and the max I take is 4 per day. Now, I also have 40mg of Oxycontin ER (extended release). I only take this when I'm in crisis and trying to prevent a ER or hospital visit; I am supposed to take 1 pill every 8 hours, but one a day is usually good for me and I would just use the Lortab for breakthrough pain. On good days I can take two Lortabs a day and be good. Like you I was on Tylenol #3 up until I turned 19. After that I have been on Lortabs since.

Comment by Nana007 on March 9, 2010 at 1:06am: Thanks for all your advice. I understand fully that tolerance will happen at some point but I've seen first hand a person with a legitimate medical problem (ms) that developed a tolerance that was horrible. She got to the point where she was physically dependent. Its something that I really want to avoid. Especially when there is such a fine line between physically dependent and addiction.

Comment by Sickle Cell Warrior on March 6, 2010 at 11:45pm: Nana,

Tolerance is one of the unfortunate traits of being on longterm pain therapy. Keep in mind that when you are in pain, it affects your activities of daily living and severely impairs your emotions and activity level. I understand not wanting to get tolerant and require a higher level of pain meds, but you have to still find a good medium, a dosage that covers majority o the pain, but isn't overriding all your other senses.

Percocet is made up of 5mg of Oxycodone and 325mg of Tylenol per pill.
Vicodin is 5mg of Oxycodone and 500mg of Tylenol per pill
Lortab (different concentrations) is 7.5mg Oxycodone and 500mg Tylenol per pill

I started with 2 Percocet in 1999, but since then, my dose has been increased to Vicodin, then Lortab, and then just plain Oxycodone. I resisted the changes, but this just made me miserable since I was in pain alot, and couldn't really do anything that I wanted.

Perhaps instead of having the docs increase your Percocet dose, you could just have them switch you to plain 5mg of Oxycodone per pill. You will still get the same 5mg of Oxycodone that is in Percocet, but without the additional Tylenol, thereby limiting the damage to the liver. This also might improve the effect of the pain medicine.

Just a thought.

The other thing is to switch to a different medication regimen altogether, but you can cross this bridge when you get to it.

Good luck,

SCW