I am discouraged! I know things could be worse, much worse, but I hate the purple spots, sometimes as big as one inch diameter, that appear periodically on my hand. They start very dark, a few days later they become lighter, then they go away and maybe I don’t have any for a week or two. They are so ugly! Sometimes people ask me why I have them, and I don’t know what to answer.
The spots started after the assumption of the anticoagulant medicine Sintrom (acenocoumarol) (my INR seems to be fine). A month ago I asked my doctor if I could switch to low-dose aspirin and he agreed. But nothing changed. Frankly, I think that the doctor has no idea why I get these hematomas. The only thing he was able to say was that if I had more fat in my hand it would be better.
One time – horror! – a spot appeared on my chin. If it happens again I scream so loud that you will hear me across the ocean! (You will say: Uhm, must be Annamaria in Italy) Seriously: Is this a common phenomenon? Is there anything one can do?
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Annamaria - Name: Annamaria
- Who do you know with myeloma?: I am a patient
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: Purple spots on my hand (hematomas)
Hi Annamaria,
Those purple spots are called purpura, and are often caused by low platelets. My husband has suppression of his bone marrow from Revlimid, and has had these pop up as you describe. They go away after a few days, but meanwhile another may have appeared. He is taking a break from Revlimid-dexamethasone maintenance as a result. We are waiting for his numbers to come back up before re-starting again, or beginning with a new treatment regimen.
You should have your blood work done. Are you also fatigued? My husband's hemoglobin and RBC are also suppressed. Fingers crossed that the numbers come back up, otherwise it may be another disease process causing the myelosuppression.
Many thanks.
Those purple spots are called purpura, and are often caused by low platelets. My husband has suppression of his bone marrow from Revlimid, and has had these pop up as you describe. They go away after a few days, but meanwhile another may have appeared. He is taking a break from Revlimid-dexamethasone maintenance as a result. We are waiting for his numbers to come back up before re-starting again, or beginning with a new treatment regimen.
You should have your blood work done. Are you also fatigued? My husband's hemoglobin and RBC are also suppressed. Fingers crossed that the numbers come back up, otherwise it may be another disease process causing the myelosuppression.
Many thanks.
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lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: Purple spots on my hand (hematomas)
AnnaMaria,
So sorry to hear you have the purple spots on your hands. My husband has been on Revlimid and dexamethasone maintenance for 5 years. He has those purple spots on his hands and arms. So far that is the only place we have seen them. They can get very large, and there are so many that he looks like someone beat him up. We asked his oncologist, but he just thought he might be bumping his arms and hands and that is causing some slight bleeding under the skin. He also has no fat and very thin skin.
Sorry I don't have an exact answer for you, but I wanted you to know someone else is dealing with the same problem and has not found a solution either.
So sorry to hear you have the purple spots on your hands. My husband has been on Revlimid and dexamethasone maintenance for 5 years. He has those purple spots on his hands and arms. So far that is the only place we have seen them. They can get very large, and there are so many that he looks like someone beat him up. We asked his oncologist, but he just thought he might be bumping his arms and hands and that is causing some slight bleeding under the skin. He also has no fat and very thin skin.
Sorry I don't have an exact answer for you, but I wanted you to know someone else is dealing with the same problem and has not found a solution either.
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Dianna
Re: Purple spots on my hand (hematomas)
Thank you for your sympathetic answers, Iwem and Dianna. “Two in distress make sorrow less” said Samuel Beckett. Now that I learned the medical term for the spots, I looked it up on the web and I discovered that, yes, sometimes it is due to low platelets. This is not my case. Just yesterday I had my monthly check in and the only real deficit is with the white cells, only 600 neutrophils (I had to suspend Revlimid for a week or more, as I have done before). My hemoglobin is at 11.9, almost normal, my red cells are in the range.
I am fatigued only in the sense that when 9 pm comes not even the appearance of Richard Gere would stop me from hitting my bed and falling asleep instantly, and only waking up after 10 hours, but during the day my energy levels are good.
The web mentions cancer as a possible reason, but I only saw vague explanations. It seems to me that Revlimid and/or dexamethasone play a role with this purpura, since you both mention them. I did read that cortisone can make the skin very thin. I cannot suspend the treatment because I already had a relapse, in 2015, and so we cannot talk of maintenance, I don’t think.
I was hoping that the foundation would cover the spots. It works beautifully with the redness in the cheeks caused by dex. The spots, instead, take an even more unnatural colour!
I am fatigued only in the sense that when 9 pm comes not even the appearance of Richard Gere would stop me from hitting my bed and falling asleep instantly, and only waking up after 10 hours, but during the day my energy levels are good.
The web mentions cancer as a possible reason, but I only saw vague explanations. It seems to me that Revlimid and/or dexamethasone play a role with this purpura, since you both mention them. I did read that cortisone can make the skin very thin. I cannot suspend the treatment because I already had a relapse, in 2015, and so we cannot talk of maintenance, I don’t think.
I was hoping that the foundation would cover the spots. It works beautifully with the redness in the cheeks caused by dex. The spots, instead, take an even more unnatural colour!
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Annamaria - Name: Annamaria
- Who do you know with myeloma?: I am a patient
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: Purple spots on my hand (hematomas)
Hi,
The test results that you posted only mention neutrophils and hemoglobin. What is needed is the platelet results. After a certain low point, this is possibly one effect. I have have had these same spots on my arm and back of my hand for over a year now, with no untoward issues. They just plain don't look attractive!
Keep up the good fight!
The test results that you posted only mention neutrophils and hemoglobin. What is needed is the platelet results. After a certain low point, this is possibly one effect. I have have had these same spots on my arm and back of my hand for over a year now, with no untoward issues. They just plain don't look attractive!
Keep up the good fight!
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GaryH - Name: GaryH
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Nov./97
- Age at diagnosis: 44
Re: Purple spots on my hand (hematomas)
You are right, Gary, I forgot to write the platelets value, which is 199.000 per square millimeter. The normal range is 150.000-400.000, so in my case the hematomas have a different cause. 
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Annamaria - Name: Annamaria
- Who do you know with myeloma?: I am a patient
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
Re: Purple spots on my hand (hematomas)
Hi Annamaria,
Not to worry you, but since your platelet level is in the normal range, has your doctor considered amyloidosis? Easy bruising is a common symptom of amylodisis and about 15% of myeloma patients will develop amyloidosis. With amyloidosis, the amyloid protein makes the blood vessels under the skin more fragile, which in turn makes one more prone to bruising.
Not to worry you, but since your platelet level is in the normal range, has your doctor considered amyloidosis? Easy bruising is a common symptom of amylodisis and about 15% of myeloma patients will develop amyloidosis. With amyloidosis, the amyloid protein makes the blood vessels under the skin more fragile, which in turn makes one more prone to bruising.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Purple spots on my hand (hematomas)
Annamaria,
I thought I would add to the others who have posted there response. I know the feeling of having these spots. My oncologist has had me on 325 mg aspirin for quite a long time. I can just bump into something without even feeling any pain but still get large bruises. My platelet level is fine also. The places where I bruise is mostly on the back of my hands and arms up to the elbow. Thin skin in that area.
I also have to be careful of using those really sticky bandaids. If I use one and try to take it off, it leaves a huge bruise and can remove some skin. So I now use a sterile, non-stick pad for a bandaid with a wrap to hold the pad on.
I just worked in my yard a few days ago and never felt anything that would throw up a red flag for hurting myself, and when I took a shower, I looked at my left arm and it looked like a war zone. Bruises from my wrist to my elbow. And I wore gloves.
Best of luck, Castaway
I thought I would add to the others who have posted there response. I know the feeling of having these spots. My oncologist has had me on 325 mg aspirin for quite a long time. I can just bump into something without even feeling any pain but still get large bruises. My platelet level is fine also. The places where I bruise is mostly on the back of my hands and arms up to the elbow. Thin skin in that area.
I also have to be careful of using those really sticky bandaids. If I use one and try to take it off, it leaves a huge bruise and can remove some skin. So I now use a sterile, non-stick pad for a bandaid with a wrap to hold the pad on.
I just worked in my yard a few days ago and never felt anything that would throw up a red flag for hurting myself, and when I took a shower, I looked at my left arm and it looked like a war zone. Bruises from my wrist to my elbow. And I wore gloves.
Best of luck, Castaway
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Castaway - Name: George
- Who do you know with myeloma?: just myself
- When were you/they diagnosed?: 1/24/14
- Age at diagnosis: 62
Re: Purple spots on my hand (hematomas)
I also bruise easily. This was a problem associated with steroids (dexamethasone, methylprednisolone), but now that low-dose aspirin has been added it's a lot worse. My platelet counts have been normal. I have to be careful not to have anything bump or scrape my hands or wrists. These are the areas that most commonly bruise because they are subject to getting bumped. As a previous comment noted, even an almost imperceptible bump can leave a bruise. Biggest danger: putting on a backpack (the straps scrape the backs of my hands if I'm not super careful).
Good news is that the bruises clear in less than a week. Oh, the aspirin was added because I am now on Pomalyst.
Good news is that the bruises clear in less than a week. Oh, the aspirin was added because I am now on Pomalyst.
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BobD2010 - Name: BobD
- Who do you know with myeloma?: no one on the site now
- When were you/they diagnosed?: 2010
- Age at diagnosis: 67
Re: Purple spots on my hand (hematomas)
I think bruising can be of two types, the one described by Bob, which makes your skin break and provokes bleeding like in a regular wound, and the one in which it just creates the purple spots under the skin. Last winter I had the first kind too, then, inexplicably, it stopped.
Amyloidosis? Brr, just the word sends the shivers down my back. During the 2015 relapse, I had it in my stomach and it was not fun, my digestion stopped totally and I was in hospital for two weeks. But I have had these spots for a year now and feel fine; can one have amyloidosis without any pain? I will mention it to my doctor anyway.
As I kept reading about the subject, I discovered that sometimes purpura it is due to lack of vitamin C. So now I am taking a 500 mg supplement every day. I will let you know if it works. If it does, it will be the easiest solution of all!
Amyloidosis? Brr, just the word sends the shivers down my back. During the 2015 relapse, I had it in my stomach and it was not fun, my digestion stopped totally and I was in hospital for two weeks. But I have had these spots for a year now and feel fine; can one have amyloidosis without any pain? I will mention it to my doctor anyway.
As I kept reading about the subject, I discovered that sometimes purpura it is due to lack of vitamin C. So now I am taking a 500 mg supplement every day. I will let you know if it works. If it does, it will be the easiest solution of all!
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Annamaria - Name: Annamaria
- Who do you know with myeloma?: I am a patient
- When were you/they diagnosed?: April 2012
- Age at diagnosis: 58
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