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My best friend has been in a sickle cell crisis constantly for two years now and going into the hospital for even a week only gets her pain level down to a 7 before it jumps back up to 9 or 10. What can a sickle cell patient do when it seems as if hospital and prescription medicines no longer provide the relief that he/she needs? Are there patients who never get over being in a crisis?
Generally sickle cell pain events do not last for long periods of time. If you are taking opioid pain medications (oxycontin, dilaudid, morphine, etc.) every day you can develop hyperalgesia. The pain medications actually make the pain worse. You can also be physically dependent on opioids (different from being “addicted”) and become very sick when you do not take them. It also affects your libido and your level of estrogen or testosterone.
There are ways to deal with this, but it is not easy. You have to be treated with hydroxyurea or chronic red blood cell transfusions and wean off all of the medications. It takes months. You need to have counseling, you may need to have antidepressant medications. You need a supportive family, supportive doctor, supportive friends. If you have some problems like osteonecrosis (avascular necrosis) it is harder and you may have to have a joint replacement to become pain free.
It is possible. Many people are unable to wean off the opioids. In that case you just have to have some empathy and compassion for your friend. Usually people who have this problem were over prescribed medications for their pain. It is not their fault they have an awful disease and they are doing the best they can.
I have struggled with Sickle Cell Disease (SS) for as long as I can remember. Things started looking up after the combination of Depo-Provera and Hydroxyurea but the feeling didn't last…
Since then, I have become a pescetarian - someone who eats mainly fish & seafood as their main source of protein, started taking turmeric supplements - to naturally aid in my inflammatory response, and most recently have started religiously drinking RedCel tea - a supposed "sickle cell" tea that I found online that claims to eliminate crises completely.
As far as pain management goes, I use a variety of methods: deep breathing techniques; mindfulness; drinking even more fluids - such as the RedCel tea, green tea, water, and Gatorade; my recliner with massage settings and heat; dilaudid (4mg every few hours); fentanyl patches (100mcg every 72hours); and if all of that fails, I have to give in and call 911 for an ambulance to the ER. (I'm currently in the process of changing hematologists but with my previous one, if I was able to drive, I could go and receive fluids and Toradol to see if that would diminish my pain...) I'm forever tired of having to rely on the ER and this is mostly because I'm tired of being labeled as "drug-seeking" or straight out at times as a "junkie". It's too much to deal with, ON TOP OF ALL THE PAIN!!! So, am I doing all that I can do or is there more I can do to control my crises?
And an even bigger question to you... What do you think of medical marijuana for the treatment of Sickle Cell Anemia? I live in Georgia, where medical marijuana was approved for the treatment of Sickle Cell patients and I'm eager to try it out, as I am running out of options opioid-wise. I would like your feedback on this because I have heard mixed reviews on the topic. Our bodies all process different drugs and treatment forms differently as I've heard that it has worked for some but not for others. I also have researched that only certain strains of marijuana are effective for sickle cell patients.
I hope you are still taking hydroxyurea; my experience has been that it has helped many patients with their sickle cell disease. There is a small percentage of people who have side effects (low platelet counts, or hemoglobin) that lead to discontinuing hydroxyurea and it has been reported that for a small percentage of people it does not work as well as they would like. Hydroxyurea does need to be monitored by a doctor familiar with its use and side effects.
Turmeric is good, it contains curcumin which has been investigated in numerous studies and with some encouraging results. If you are into natural supplements there is a very good app that will give you the scientific basis for hundreds of natural supplements: About Herbs App from Sloan Kettering Cancer Center. The RedCel Tea company does not publish ingredients so not much to say about that, but drinking tea and water is good during a pain episode. Talk to your healthcare provider about vitamin D, it has been shown to decrease pain in people who have sickle cell disease.
You are taking the maximum strength opioids. Unclear how often you are taking the diluadid and fentanyl patches, but there are some side effects most people don’t know about when taking opioids on a regular (daily or almost daily) basis. Hyperalgesia is the most common and most distressful for people taking opioids. Hyperalgesia is increased sensitivity to pain when taking opioids. It occurs within days of taking opioids and is common when you are in the hospital and on intravenous opioids, makes dealing with a pain episode more difficult. There are endocrine side effects of chronic opioid therapy, but they do not occur unless you are taking opioids daily for months.
My response to pain treatment in emergency rooms is in an answer to another question, it is a huge problem. In a perfect world there would be day hospitals for pain management and transportation other than an ambulance to take you to and from a pain center.
I have also commented on marijuana in another answer. Yes, some people find that marijuana is helpful in pain management. Medical marijuana is an herb, there are many chemicals in plants, medical marijuana is cultivated to increase the cannabinoids in the plant. Even though marijuana is used for pain and other purposes, it has not been studied due to federal restrictions on the scientific use of cannabinoids for medical purposes. There are some studies in progress, but they have not reported any results. There are some serious side effects to consider when using cannabinoids: memory loss is common; there could be some other learning problems associated with cannabinoids. Cannabinoids are psychoactive medications; there can be other effects that are rare or unknown. Smoking marijuana is as dangerous as smoking tobacco; all of the bad things that are in tobacco smoke are in marijuana smoke. Airway hyper-reactivity (asthma) is common in sickle cell disease, as are other pulmonary problems, that could be made worse by exposure to smoke and the particles of impurities in these herbal drugs (tobacco is a herb as well). You should discuss your pain management with a healthcare provider you trust concerning what medications and treatments would benefit your pain episodes the most.
What is the best thing to do for my pain crisis? I’ve reached the point where oxy and dilaudid pill give me no relief. I need help.
Opioids can cause hyperalgesia (increased pain sensitivity, can be confused with tolerance), tolerance (the dose needs to be increased due to your body becoming tolerant to the dose you are taking), stopping the opioids without tapering the dose: withdrawal. If you are taking opioids almost daily or daily you need to taper off the opioid or you will become ill, your body has become habituated to the opioids. Withdrawal symptoms can feel like a pain episode.
Besides opioids you need do other things for pain. Hydroxyurea can decrease pain episodes and acute chest syndrome in adults, it is underutilized in sickle cell disease. It takes three to six months to get the full effect of hydroxyurea, some people feel better in weeks. In some studies vitamin D supplements were effective in reducing pain. Having a good diet and drinking a lot of liquids will make you feel better and decrease pain. Getting some light exercise has also been shown in some studies to improve blood flow in sickle cell disease.
If you have been taking opioids and continue to have pain you may also be depressed (very common) and counseling can be helpful.
During a pain episode you can use distraction exercises, warm heating pads, and other methods of pain management.
Talk to your healthcare provider about what you can do besides opioids to decrease pain. Chronic pain is not relieved by opioids, there are other medications that can be helpful for chronic pain in sickle cell disease.
What are the best ways to prevent and treat vaso-occlusive crises? I'm currently in Nigeria and have been involved in SCD clinics, this seems to be one of the many common health issue patients are facing, that and wound ulcers.
Where it is available hydroxyurea is a medication that can prevent complications of sickle cell disease when used appropriately and monitored. Currently there is a study in Angola, the DRC, Kenya, and Uganda in children to determine the correct starting dose and the maximum tolerated dose of this medication. This study has no results at this time. In India (half of all people in the world with sickle cell disease live in Nigeria, DRC, and India) it has been reported that hydroxyurea at 10 mg/kg/d is a safe and effective treatment for sickle cell disease. At this dose there was a dramatic decrease in pain episodes, along with all other parameters studied. Children were examined and had laboratory testing monthly. This dose is two to three times less that what is recommended in the United States, it would be expected that hematological side effects would be decreased at this dose. The dose used in the United States was determined by the maximum tolerated dose (the dose at which there were significant decreases in blood counts).
Niprisan is a mixture of five herbs that are found in Nigeria. The medication derived from these plants has been tested in humans and in sickle cell mice and has been found to be effective in reducing pain in sickle cell disease in small studies. The medication has been manufactured in Nigeria by a private company, however, in December of 2015 the license for manufacture was withdrawn from the pharmaceutical company and the drug is now. manufactured by National Institute of Pharmaceutical Research Development (NIPRD) and is available only through this government agency. I am not aware that the active ingredients of the herbal mixture is known.
It has been reported that supplementation with vitamin D has also decreased pain in sickle cell disease in small studies.
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