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Living with Sickle Cell Disease
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What treatments are you taking for Sickle Cell disease?

What are the pros and cons of your medications and treatments?

Share your experiences and interact with other members in the comments below! :)

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For about 20 years now, medication is folic acid and hydroxycarbamide every day. A multivitamin complex every other month, ibuprofen probably twice a month when my leg hurts badly and I limp more, half the minimum dosage of alprazolam when I am extremely anxious.

Vaccines & Immunizations - must always be in order but until I went to uni when vaccines were finally available in a synthesized version I didn't take most of them. Nowadays, it's the flu shot every year, hepatitis b, HiB, pneumococcal whenever they need to be renewed.

Antibiotics - During childhood and teenage years I took Penicillin every month as a preventive mensaure agianst infections. As an adult, the latest trend was not to take it all the time so that when ot was really needed the organism would react quicker as needed. There seems to be a debate about it in the medical community but it has worked for me. Antibiotics have proven to be more effective in the combination amoxicillin + clavulanate.

During hospital admission, salin solution IV from the 1st moment and usually stronger pain killers such as Tramadol and even morphine drip. Every now and then blood transfusions when the haemoglobin levels drop dramatically and need a boost.

As part of day-to-day life management of SCD, constant hydration, avoid sudden temperature changes, staying out of the strong sun from 12:00 to 17:00 (in Portugal, particularly during Summer), wearing appropriate clothing, controlled physical exercise, a balanced diet, resting and sleeping enough.

Medication cons - a) hydroxycarbamide has made me a lot more skin sensitive - drier skin and immediate reaction to hot direct sun. Solution: applying lots of rich body lotion, driking lots of water, eating papaya and rubbing the inner side of the peel against the itchier spots, staying away from the hotter sun. b) ibuprofen - don't exaggerate and always eat properly before you take it

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Am on a 4 weekly exchange transfusion via porthacath in my chest.

Regular paracetamol, folic acid and morphine pain killers for painful crises either home or hospital.

Most of the cons are mostly with opioid, itching, nausea, dependence, withdrawal, depression, insomnia etc etc

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I am drinking 4 litres of alkaline water it has absolutely changed my life! I have been one year hospital admission free. It has been really good for me, I still meditate to keep my stress levels down, I take minimum medication because I think in the long run it doesn't end.

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Hi Andy. What is alkaline water and how does it help SCD patients?

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Hi Feio, if my memory is correct alkaline water has a higher PH than regular tap water and the way it makes me feel is energized. Which I really need because I'm so tired but overall it seems yo keep me hydrated longer. If pure alkaline water isn't available to you at the grocery purchase "Smart Water" bit speedy but well worth it. Try it to see if you like it.

Living Life

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Hi Living Life, hope you are keeping well. Thanks for the recommendation, I will try the smart water and see if it helps.

Kind regards

Fei

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Hi Fei,

Trusting that the water will work for you. Please give it time and do let me know what you think either positive/negative. We know what works for some doesn't for others but hoping best for you.

Living Life

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Pain killers like Codeine Phosphate tend to be addictive and as such I am very conscious using it but only used as required. The notion of having to take tablets everyday is not something I do like but on the long run better be safe than sorry. On treatments, the fact that I can go somewhere to be attended to is very reassuring.

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I'm on folic acid, penicillin, lansoprazole and vitamin d daily,

I reacted to a transfusion badly last year which almost cost me my life because we didn't know I had antibodies as I had had transfusions before and I was alright, I'm on and off with hydroxycarbamide, I'm not the biggest fan of it but I have to try something as they don't want to transfuse me all the time

I take cyclizine daily also because I feel nauseous a lot of the time

I take codeine and tramadol daily the painkillers make me drowsy and it can get a bit hard to do anything else after I've taken them because I just want to sleep also for my pain but I want to cut down and detox if anyone knows of any good natural remedies for pain can you please let me know thank you

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Currently I don't take anything, I take each day as it comes. On record I am supposed to take Penicillin V and folic acid daily. Unfortunately some of the hematology doctors don't agree with me not taking them at all but it seems to work for me.

If I feel like I'm getting a cold or other symptoms I will take the Penicillin for a week or so then stop. If I'm in pain or feel run down, I will take ibuprofen first then tramadol as a last resort. I don't like the way tramadol makes you feel, having 2 boys and a full time job I have to be strategic when taking it as it generally puts me to sleep.

Day to day I stay hydrated just water and eat healthy as best I can.

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I take folic acid everyday, all the B- vitamins, I exercise (walking only) not less than 3 days a week. Drink water all day, and especially start my day by drinking water before I consume anything in the morning. I take one Aleve everyday, sometimes I need another later in evening to assure restful night. Tramadol when it's still home manageable, but that's generally a sign i'll soon be in hospital. Depending upon which vital organ is attacked I get nitro glycerin, delauded(sp), IV, prednisone. I take every flu, and pneumonia vaccines. I've been asking for 2 years about taking the Shingles vaccine is it safe for me. But no one can answer ...... can you? I'm concerned because if I developed shingles I most certainly will have crisis, only how bad will it be a what other organs will be picked on. In addition, if I get the vaccine what side effects will do to my state. Catch22, and a shame there's no answer to my question

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Sometsinger, Here I sit another year with a prescription for the Shingles shot, why I haven't gone and gotten it I have no explanation. When I do it, I will let you know how I feel.

Living Life

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I had the shingles vaccine with no noticeable side effects, but i only have the trait. My son, who has SCD will be getting the shot for sure. During one of his hospitilizations he was exposed to a guy with shingles and later came down with chicken pox.

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Taking Hydrocodone, was taking Morphine but, really didn't do much for my pain altered my voice but didn't touch my pain. Hydrocodone, is my daily pain med upon waking and throughout my day it enables me to do chores and do things for my 96 yr., old Mother. When the going gets tough, I take Oxycodone now it's (3) at least to sort of knock down the pain. Oh and that's 3@once.

Living Life

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