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Permalink Reply by Remona Fox on November 12, 2011 at 12:04pm

I was also taking hydra and experiencing all the side effects. I, too, was sick more often and find that the intensity of my crisis were much higher and targeting more vital organs. I found that the drs couldn't explain why this was the case, except to tell me that I may be the exception to the rule. FRUSTRATING!! I stopped taking it, needless to say. Even though most professionals would say that SCBT is the mild form of SCD, I would have to argue that SCBT just manifests differently. My journey has been anything but mild, and I have experienced many, if not all, of the high risk symptoms and struggles as have been described in many of the forum threads.

I have been doing red cell exchange for the last 12+ months. So far, it has been a good learning experience, but I cant say that it hasn't been without its challenges. Of the 20 people being followed in the program, I am the only one experiencing difficulties post treatment including pain, extreme fatigue, minor crisis, and extreme changes in blood pressure. I guess it still requires some tweaking...If anyone is doing red cell exchange, please let me know! I would love to chat.

Hanging in there,

Remona

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Permalink Reply by GL Wilbert on November 24, 2011 at 1:06am

I had a complete blood exchange in July of 2005 and has done very well since. I had to stop Hydrea cold Turkey after getting worse with all of the known side effects. If your doctor wants to do red cell exchange, I would suggest a complete exchange thru the neck as this method is much more effective than transfusing 1-2 pints at a time! I'm currently off all meds and seldom use any heavy hitting pain meds to control what pain that may develop when using this listed protocol: 

Plenty of non fluoridated water, plus Gatorade.

A sublingual B12, folic, B6 pill (Use Methylcobalamin form of B12)

Omega 3 fish oil with astaxanthin

CoQ10 or Ubiquinol with L-Carnitine

Calcium-magnesium, Potassium tablet

Whole food multivitamin (Spirulina Base)

Oil of Oregano (will control any infection)

My 20 year old Nephew also has SCD and use this same method with much of the same success... I hope it works for you as well? if you want brands and dosage amounts let me know?

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Permalink Reply by Remona Fox on December 30, 2011 at 11:14am

Hi. I would love to know the dosages and brand types for your vitamin regime. Nothing seems to be working for me lately. 

Hope all is well with you.

Thanks

Remona

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Permalink Reply by Austyn Hart-Tinsley on December 2, 2011 at 1:14pm

Hey everyone I can definitely relate and say I’ve been living with SCD for 24 years when I was about 12 I went on Hydrea but had to stop taking it because of the side affect an massive migraines. My SCD got really bad about 2 years ago and I’ve been in and out the hospital ever since. I also have RA and Avascular necrosis of the hips. The doctors can't control my RA so I’m on a high dose of prednisone and that doesn’t help the AN at all. I got a port put in and now I’m starting monthly exchanges, December will be my second one but the doctors are hopeful it will help with the crises. I am now using Hydrea again to see if I would help rather than harm. The doctors said if everything goes well I may be able to get off some of my medication right now I’m on quite a few but slowly being able to stop taking some. I have lots of minor crisis quite often and have to use pain med or cannabis. I hope this helps a little but I will keep everyone posted on how things go so we can talk later. 

--always smile it’s a new day

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Permalink Reply by Lola on December 5, 2011 at 6:53pm

Hi I shukura, i have SCBT and was taking hydrea for 9 months, it gave me more side effects and crises whilst I was on it than off, the frequency and intensity of the crises were worse. My Gps are talking about pusuing the red cell exchange route also. Will keep you informed. 

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