Hi everyone,
I am a chronic hepatitis B and participant in AB-729 trial.
It’s been a few months since my hands are cold and blue sometimes with orange spots. Does anyone know why it happens and what causes it?
1 Like
Hi Ecky!
I’ve been wondering how you were doing on the trial! Could it be thyroid? I just know my study doctor did mention that thyroid can be altered and know our thyroid does lots of things with regulating functions for us. I hope you get some answers from your doctor and professionals here!
How much longer do you have with the interferon? I know you were randomized into the most aggressive arm. I found out week before last I got randomized into the least aggressive arm (12 weeks of INF) and no continuation of AB medication. I’ve had 2 doses of INF so far and side effects are very manageable, slim to none.
With that said, I was disappointed because I really wanted INF for 24 weeks f(the longest this study offers). I personally cannot see how INF for only 12 weeks is going to do much of anything for long term control or loss of HbsAg, just from reading about all other studies out there where they use/have used INF for HBV. But, it is what it is and don’t think I can request for more INF just because I wanted it longer. Haha!
Continued good luck and hope the cold/circulation issue works itself out!!!
Hi @3kids4me,
Good to hear from you!
Two more weeks of Pegasys and then only TDF 
.
I have almost daily headaches, mostly manageable but sometimes are really bad, recently started to lose hair and can’t keep calcium, iron, wbc, rbc, etc in the normal range. Hopefully soon, after I’m done with Interferon everything will be back to normal 
.
1 Like
I’m so sorry you the INF has been so rough. I’m sure bloodwork will be back to normal once off. At least you know you did the trial, did the most aggressive, and I hope/pray that you will be HbsAg negative after all this for you!!!
1 Like
I have Raynaud’s Disease and that happens to me a lot. I don’t know if this is what you are experiencing or not, but my Dr. said it is an autoimmune disorder.
Raynaud’s is usually triggered by cold temperatures, anxiety or stress. The condition occurs because your blood vessels go into a temporary spasm, which blocks the flow of blood. This causes the affected area to change color to white, then blue and then red, as the blood flow returns.
2 Likes
Thanks for your encouragement and prayers for me!
May the Lord bless and heal you!
2 Likes
Thanks for your reply!
What do you usually do your hands to look normal, especially in public? 
1 Like
My hands don’t itch or anything they just change colors and are either numb or very cold. I have fuzzy gloves in all my cars. I also always have a hoodie just in case it gets chilly because for me, cold triggers an episode too. If it gets too bad, I have run warm water on my hands to break the cold cycle. It has just become something I am used to dealing with so I am always prepared.
1 Like
Your blue hands seem to point to the disorder Raynaud’s Disease.
2 Likes
Dear @Ecky,
I’m not sure what may be causing this, but if it is a new phenomenon, you should be able to report it to the appropriate contacts your were given with the trial information pack. It might be worthwhile, as they may be able to give you more appropriate advice.
Thomas
1 Like
Dear @ThomasTu ,
I appreciate you for taking time to answer any questions here. I will report about the phenomenon to the doctor when I go there.
Thanks!
1 Like
I seem to have it. Whenever temperature is below 20 degrees celsius, my fingers turn cold and quite white. This also matches Raynaud’s Disease description.
1 Like
Raynaud’s is VERY common. I have had it all the way back into my teens, I just never knew what it was. About 8 years ago I had an episode while at my Dr.'s office and she noticed and said OH, you have Raynaud’s… She sent me to a specialist just to be sure I didn’t have any underlying conditions associated to it, which I don’t. She said it is pretty much harmless, but can be very annoying. It happens to my fingers, some of my toes, my nose tip, and my earlobes. It can happen on a 90 degree day or a 20 degree day, there really is no rhyme or reason to it so I just always have a hoodie and some warm gloves with me. It can be caused by temperature drops, stress, anxiety, even temperature changes like leaving and air conditioned car and stepping outside into warm sunlight. I have had it happen just walking into an air conditioned store from outside?
2 Likes