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MDS Myelodysplastic syndromes

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  #1  
Old Fri Jan 6, 2017, 06:23 AM
Meri T. Meri T. is offline
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Location: Tokyo, Japan
Posts: 167
Diagnosed MDS, now joint pains!

I've been reading up on MDS and joint pains ever since my knees started hurting, but haven't found much info on it. Actually it started at the shoulders, then the wrists, now it's in my knees.
I brought it up with my hematologist just yesterday, he said it comes with bone marrow failure, and left it at that.
I know he is focusing on raising my blood counts rather than alleviating other symptoms, but my knees really hurt !!

Does anyone else have this kind of pain, it hurts when I bend my knees, not when I am walking. I can't bend it, and it even hurts when I sit in one position for too long.

Diagnosed MDS RAEB1 about 5 months ago, I have only started steroids (primoblan 10mg/day) and vitamins K and D, with antibiotics for 3months. So could the steroids have anything to do with this pain? Or is this just part of getting old?

The good news is with the steroids and vitamins, my counts have stabilised somewhat. I just need some rest from all of this knee pain!

Any, absolutely any suggestions and comments are more than welcome.
Meri
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  #2  
Old Fri Jan 6, 2017, 09:55 AM
bailie bailie is offline
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What are you now using for joint pain relief? I am using Tylenol and Celebrex.
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age 70, dx RAEB-2 on 11-26-2013 w/11% blasts. 8 cycles Vidaza 3w/Revlimid. SCT 8/15/2014, relapsed@Day+210 (AML). Now(SCT-Day+1005). Prepping w/ 10 days Dacogen for DLI on 6/9/2017.
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  #3  
Old Fri Jan 6, 2017, 10:48 AM
Bossywife Bossywife is offline
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My husband has the same problem when his bloodwork is bad. When things leveled out .. it got much better!
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  #4  
Old Fri Jan 6, 2017, 05:54 PM
Meri T. Meri T. is offline
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Red face Not taking any painkillers yet

Quote:
Originally Posted by bailie View Post
What are you now using for joint pain relief? I am using Tylenol and Celebrex.
Baille,

I used to take "pain-aid" (aspirin+acetaminophen) but ever since being diagnosed, I don't take any meds without my doctor's consent, being on the cautious side. He did not prescribe me any painkillers.

On the back of the pain-aid package, it states "might cause stomach bleeding if on ...steroids", so I thought I would try to ride this one out without drugs. Trying, not succeeding though.

Maybe some exercise and massaging might help. It can't get any worse than this.
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  #5  
Old Fri Jan 6, 2017, 06:09 PM
Meri T. Meri T. is offline
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Blood counts

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Originally Posted by Bossywife View Post
My husband has the same problem when his bloodwork is bad. When things leveled out .. it got much better!
Thank you Bossywife.
How bad is bad?

My bloodwork as of 5 Jan was
WBC 1.7
RBC 3.26
Plt 37
Hgb 10.2
The plts have been sliding down steadily from 70, and nothing seems to keep it at bay. My hematologist is not (or doesn't seem to be) worried.
Was your husband's counts around this range when his joints hurt?

Meri
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  #6  
Old Fri Jan 6, 2017, 07:04 PM
Sally C Sally C is offline
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Y'all may want to try tumeric which contains curcumin. It is the yellow substance in mustard and curry. Since it is a spice it may be safer. Here is a link about it.
All the best,
Sally

https://authoritynutrition.com/top-1...s-of-turmeric/
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  #7  
Old Fri Jan 6, 2017, 08:14 PM
Meri T. Meri T. is offline
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Love curry!

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Originally Posted by Sally C View Post
Y'all may want to try tumeric which contains curcumin. It is the yellow substance in mustard and curry. Since it is a spice it may be safer. Here is a link about it.
All the best,
Sally

https://authoritynutrition.com/top-1...s-of-turmeric/
Year end cleaning, just threw a batch of fresh tumeric out, what was I thinking !!??

Thank you Sally. I will let you know how it turns out.
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  #8  
Old Sun Jan 8, 2017, 02:16 AM
Meri T. Meri T. is offline
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Smile Oiling those old joints!

I remembered when I had pain in my forefinger, my orthopedics told me not to bandage it, on the other hand I should practise " rehabilitating" my finger by practising my "grasp", that means moving it.
So I decided to WALK my joint pains off. Not a good idea, because my knees were bearing the brunt of my weight, so I couldn't really walk that far without finding somewhere to sit and rest.

Then I got on my bicycle and tried cycling. It really worked ! I have been cycling up and down the riverbank, getting some exercise, some fresh air, and soothing my joint pains too. They don't hurt as much now. Mentally it's more refreshing than indoor cycling. You get to see and meet people on the way.

I know, for some folks it's winter, and snowing, and outdoor cycling is out of the question, but whatever works. I just hope this helps anyone out there with knee pains who need exercise.
Meri
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  #9  
Old Thu Jan 12, 2017, 08:11 PM
medicalenigma medicalenigma is offline
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Magnesium

Meri, This is a stretch but Magnesium is stored in the bones and has been known to help with pain in the joints.

http://www.arthritis.org/living-with.../magnesium.php



Quote:
Originally Posted by Meri T. View Post
I've been reading up on MDS and joint pains ever since my knees started hurting, but haven't found much info on it. Actually it started at the shoulders, then the wrists, now it's in my knees.
I brought it up with my hematologist just yesterday, he said it comes with bone marrow failure, and left it at that.
I know he is focusing on raising my blood counts rather than alleviating other symptoms, but my knees really hurt !!

Does anyone else have this kind of pain, it hurts when I bend my knees, not when I am walking. I can't bend it, and it even hurts when I sit in one position for too long.

Diagnosed MDS RAEB1 about 5 months ago, I have only started steroids (primoblan 10mg/day) and vitamins K and D, with antibiotics for 3months. So could the steroids have anything to do with this pain? Or is this just part of getting old?

The good news is with the steroids and vitamins, my counts have stabilised somewhat. I just need some rest from all of this knee pain!

Any, absolutely any suggestions and comments are more than welcome.
Meri
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  #10  
Old Sun Jan 22, 2017, 08:45 PM
Meri T. Meri T. is offline
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Location: Tokyo, Japan
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Back to Basics

Agnemia, thank you very much.

I went back to the Aplastic Anemia& MDS packet YOUR GUIDE TO UNDERSTANDING MDS the Foundation helpfully sent me when I was first diagnosed last year. (Thank you Neil for the Link). The "Symptom Snapshot Chart" on the last pages listed Pain (joint or muscle pain) as one in about several common symptoms related to this disease.

Knowing that my joint pains are part of the parcel somewhat helped me mentally, though physically these knees are still not cooperating !

Just wanted to let others know that sometimes it's refreshing to learn something when we go back to the basics.
Meri
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  #11  
Old Mon Jan 23, 2017, 06:39 PM
Faye R Faye R is offline
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Cool Be Careful

HI I have just been reading your threads, I've just got back from a stay in hospital with the most worst bout of muscle pain I have ever had. Pain is caused by inflammation of the bones and muscles, Be very careful to what medication you take for pain, as some medication can eat into your platelets, and some can effect you white cells. I'm going to go to a cancer physio to help me get back my core muscles again. One step at a time first get fit then get will is my aim right now.
Counts as at 23/1/17
Haemoglobin 88 g/l
Haematocrit 0.27
HCV 93
MCH 30
Platelets 19
WBC 0.4
DX RCMD
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  #12  
Old Mon Jan 23, 2017, 08:50 PM
Meri T. Meri T. is offline
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Location: Tokyo, Japan
Posts: 167
Yes, not only joints but muscle pain, too !

Quote:
Originally Posted by Faye R View Post
HI I have just been reading your threads, I've just got back from a stay in hospital with the most worst bout of muscle pain I have ever had. Pain is caused by inflammation of the bones and muscles, Be very careful to what medication you take for pain, as some medication can eat into your platelets, and some can effect you white cells. I'm going to go to a cancer physio to help me get back my core muscles again. One step at a time first get fit then get will is my aim right now.
Counts as at 23/1/17
Haemoglobin 88 g/l
Haematocrit 0.27
HCV 93
MCH 30
Platelets 19
WBC 0.4
DX RCMD
Faye,
Sorry to hear about your bout of pain, and glad you are seeing a physio about it. I'm med-phobia now, ever since reading about meds/herbs and their side effects. My platelets in a span of a few months has dropped from 70 down to 40 !
Oh, and the muscle pain, tell me about it! It starts creeping up on you, and then before you know it, you can't sit or sleep in your normal position anymore. Trying to adjust to my new normal ! Stay fit, everyone.
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