1. < Blood Cancers & Disorders

Hydrea and joint pain

Posted by arecchie @arecchie, Apr 10 1:00pm

I've been on HU for 7 months and doing quite well. In the last 2 weeks, I've noticed that everywhere I have arthritis in my body (hands and wrists, feet, shoulders and hips) the pain has become quite severe. When I lie down at night the pain intensifies. I don't know if it is Hydrea or not, but has anyone else had these problems with HU affecting their arthritis pain?

When I stand up to walk, the first 10 steps are really painful in my hips.
Also, when I walk now, I've noticed that my shoulders are slumping over and I'm bending slightly forward from the waist, which is something I've never had before.

Any thoughts or knowledge would be helpful.
Thanks,
Ann

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

gmacookie | @gmacookie | Apr 11 8:38am

Humm... I have never correlated the two together but it could be possible. I have been taking it since 2014 and I have the same issues.
I will have to ask my doctor next month when I go in.

REPLY
janemc | @janemc | Apr 11 8:49am

Most of us are in our "golden" years when we're diagnosed with ET. Maybe normal aging is contributing to joint pain and stiffness?

Please do bring it up with your doctors, and seek care from an arthritis specialist as soon as you can. Early intervention is important.

REPLY
eloise999 | @eloise999 | Apr 11 9:07am

I have been on HU only a couple of weeks and note some hip pain in the morning I never experienced before. I am going to look into this. Thanks for raising it.

REPLY
luvs2dance | @luvs2dance | Apr 12 6:18pm

I suggest you have your dr do bloodwork to see where your vitamin D level is. Mine was at 30 and was told even though it is technically lowest end of normal that it’s too low. I started taking over otc vitamin D3 because it absorbs better than D2 and my dr checks the level every 2-3 months. Lo and behold my hip/back pain went away plus the creaking bones also went away. It works for me.

REPLY
1 reply
bambi1111 | @bambi1111 | Apr 13 9:06am

Hi there. I was diagnosed with ET and put on hydroxycarbamide 2 years ago. I am a dancer and never had an ache n’or pan before starting meds. Consultant told me to get tested for arthritis because I am 69 whixh I did but results cameback negative, no arthritis and no inflammation yet…. I am crippled with aches and pains so it must be the hydroxy….

REPLY
1 reply
eileen11108 | @eileen11108 | Apr 14 7:26am
In reply to @bambi1111 "Hi there. I was diagnosed with ET and put on hydroxycarbamide 2 years ago. I am..." + (show)
@bambi1111

Hi there. I was diagnosed with ET and put on hydroxycarbamide 2 years ago. I am a dancer and never had an ache n’or pan before starting meds. Consultant told me to get tested for arthritis because I am 69 whixh I did but results cameback negative, no arthritis and no inflammation yet…. I am crippled with aches and pains so it must be the hydroxy….

Jump to this post

This sounds unusual. Are you taking a high dose of HU? What has your hematologist said about this? You might want to get a consult with an MPN specialist.
Best wishes, Eileen

REPLY
1 reply
eloise999 | @eloise999 | Apr 14 9:58am

I have heard that we have more inflammation (cytokines?) with this disease. I have had an eczema flare up on my feet. Not tied to HU as far as I know. I also had a dental implant slowly fail. My understanding is that they do not fail slowly (over 2years). I am wondering if these aches and pains might be related to higher inflammation conditions in our bodies?

REPLY
jackiecarey | @jackiecarey | Apr 14 10:50am
In reply to @luvs2dance "I suggest you have your dr do bloodwork to see where your vitamin D level is...." + (show)
@luvs2dance

I suggest you have your dr do bloodwork to see where your vitamin D level is. Mine was at 30 and was told even though it is technically lowest end of normal that it’s too low. I started taking over otc vitamin D3 because it absorbs better than D2 and my dr checks the level every 2-3 months. Lo and behold my hip/back pain went away plus the creaking bones also went away. It works for me.

Jump to this post

Hello all,
I Agree with the vitamin D3 post...Ive been taking it for years and keep my level between 60 and 80. D3 has a half life of 24 hours so ive been told to take it every day..I also have my level checked every 3 months. D2 is for vegans or vegetarians. I'll add one more thing consider taking D3 with k2..D3 increases your calcium level in your vessels which can be problematic for vessel and heart issues. The k2 takes the calcium from your vessels and puts it in your bones. Ive been on HU just over 2 years, 77 years old and don't have ANY joint issues..Exercise daily...Can't add to your joint pain except my husband has a very difficult time with it, too and understand how it affects the quality of life. Please talk to your doctor before changing your medical plan just giving you some thoughts and insite into my journey....Lastly, exercise has changed. my life...It doesnt need to be much if you can and should start out slow and increase as your body allows...Your Hemotologist is your best friend and should allow you to partner in your medical plan..I wish you all good things moving forward.

REPLY
1 reply
bambi1111 | @bambi1111 | Apr 14 11:17am
In reply to @eileen11108 "This sounds unusual. Are you taking a high dose of HU? What has your hematologist said..." + (show)
@eileen11108

This sounds unusual. Are you taking a high dose of HU? What has your hematologist said about this? You might want to get a consult with an MPN specialist.
Best wishes, Eileen

Jump to this post

Thankk you…. He is an MPN specialist

REPLY
1pearl | @1pearl | Apr 14 2:04pm
In reply to @jackiecarey "Hello all, I Agree with the vitamin D3 post...Ive been taking it for years and keep..." + (show)
@jackiecarey

Hello all,
I Agree with the vitamin D3 post...Ive been taking it for years and keep my level between 60 and 80. D3 has a half life of 24 hours so ive been told to take it every day..I also have my level checked every 3 months. D2 is for vegans or vegetarians. I'll add one more thing consider taking D3 with k2..D3 increases your calcium level in your vessels which can be problematic for vessel and heart issues. The k2 takes the calcium from your vessels and puts it in your bones. Ive been on HU just over 2 years, 77 years old and don't have ANY joint issues..Exercise daily...Can't add to your joint pain except my husband has a very difficult time with it, too and understand how it affects the quality of life. Please talk to your doctor before changing your medical plan just giving you some thoughts and insite into my journey....Lastly, exercise has changed. my life...It doesnt need to be much if you can and should start out slow and increase as your body allows...Your Hemotologist is your best friend and should allow you to partner in your medical plan..I wish you all good things moving forward.

Jump to this post

Lots of exercise might be why I have no pain and no symptoms either. I do take vitamin D also.

REPLY
View MoreView Less
Please sign in or register to post a reply.