Red itchy blotches and spots

[Bambam]

In the last four weeks I have been having some weird red blotches, some small white blisters, and some small boils, around my hairline, in my scalp, behind my ears and down my neck. I started to get an itchy scalp with small pimples around the time I was diagnosed but it was given little attention. I have tried different shampoos, conditioners etc. My GP has prescribed a cortisone lotion, but I am reluctant to use it!
Now, it seems to be worsening and every day I find one or two new itchy bumps in different places - today I have one on my chest, last week there was one on my upper arm. My GP has put in a referral to a Dermatologist but I am wondering if anybody else with MDS RA is having skin problems, other than mouth sores? I am not taking any treatments and my last counts were stable. However, I have noticed I am out of breath more easily so wonder if my hb has dropped. Anybody have similar condition?

[mike b.]

I too :confused: have developed these same skin problems in the last few months and have a problem when shaving. I'm on no meds for my MDS other than Tramadol 50mg for the constant headaches that I have and a b/p medication but that shouldn't cause any problems ? Am going to Moffit next month so I'll have to ask .

[Lbrown]

What BP med are you on?

Deb

[Bambam]

I too :confused: have developed these same skin problems in the last few months and have a problem when shaving. I'm on no meds for my MDS other than Tramadol 50mg for the constant headaches that I have and a b/p medication but that shouldn't cause any problems ? Am going to Moffit next month so I'll have to ask .

I am finding there may be a connection with sun and the rash - at least the one behind my ears. Also, since my ANF was really high some time back, I have some joint pains and the rash across my nose could look "lupus" like, I'm beginning to wonder ... I too am getting some headaches now, but they are fleeting and I don't take any meds whatsoever. I only take Vit D (300mg) and Omega 3 Fatty Acids. Hope Moffit sorts you out and interested to know how it goes.

[Bambam]

I too :confused: have developed these same skin problems in the last few months and have a problem when shaving. I'm on no meds for my MDS other than Tramadol 50mg for the constant headaches that I have and a b/p medication but that shouldn't cause any problems ? Am going to Moffit next month so I'll have to ask .
Just curious Mike ... Has your skin condition improved? Mine has worsened and I now have these spots all over my face and scalp? Sometimes they itch and sometimes they're sore. The sub seems to make it worse. also, my top lip is swollen and very dry/numb. My B12 is over 1000 and I've read that this may cause acne... How is your B12? Did you get answers at Moffit? Can anybody relate or suggest what this may be?

[Marlene]

Are you supplementing with B12? If so how much and what type. If you are not, then you may have an issue with converting B12 to an usable form and would need to supplement with a bio-active form. This problem may extend to folate also. If you are supplementing, you would need to stop at least 3 days before a blood test to get an accurate assessment.

When you have a conversion problem, the blood serum level are usually higher because it's not able to be utilized.

If your cells have not been getting adequate B12/folate, then your immune system is not functioning up to par and infections don't get resolved. And then, once they start getting B12, you could see a flare up the infection(s) as your body corrects and goes after the infection.

Zinc is another nutrient to look into. A deficiency in this contribute to skin eruptions/acne.

[bebop]

have you guys been checked for shingles? My dad got that when he was sick. just a thought.

[Bambam]

Are you supplementing with B12? If so how much and what type. If you are not, then you may have an issue with converting B12 to an usable form and would need to supplement with a bio-active form. This problem may extend to folate also. If you are supplementing, you would need to stop at least 3 days before a blood test to get an accurate assessment.

When you have a conversion problem, the blood serum level are usually higher because it's not able to be utilized.

If your cells have not been getting adequate B12/folate, then your immune system is not functioning up to par and infections don't get resolved. And then, once they start getting B12, you could see a flare up the infection(s) as your body corrects and goes after the infection.

Zinc is another nutrient to look into. A deficiency in this contribute to skin eruptions/acne.

Hi Marlene, I haven't taken any supplements other than VitD and Fish Oil. I guess this suggests that I am not utilizing the B12 that occurs naturally in my mostly vegetarian diet? Reading between your lines, perhaps this is why I have this awful skin problem - that perhaps started with a small infection in my scalp? My hematologist says high B12 and skin issues are common in MDS.
What I find weird is that since the neck and face problems started - In Spain a few months ago - my top lip is quite swollen (especially in the mornings) and then as the day progresses, it becomes really dry, cracks and peels. Just the top lip!!
I am visiting my ailing mom in Western Australia at. The moment and have noticed my skin gets worse as the day progresses. I wear a hat in the sun and use SPF 50 but still it seems to flare.
I know this is not as serious as most of the problems you ar all dealing with, but I find it quite distressing to see my normally-good skin in this state.
My neutrophils and WBC are normal, as are platelets. It's those RBC that continue to dance downwards!
Thank you for your input ... It's nice to know I have friends I can talk to about this annoying condition!

[Bambam]

have you guys been checked for shingles? My dad got that when he was sick. just a thought.
Hi bebop, good thought ... But not sure if shingles shows on the face. I'll ask though ... Thanks again!

[bebop]

that was my first thought. I know my dad had them and I know another lady that had them and it was on her neck and ear area so I think it can show up most any place. good luck!

[mike b.]

:DHi bebop, good thought ... But not sure if shingles shows on the face. I'll ask though ... Thanks again!

I talked with the nurses at Moffitt and they seem to think that my bumps are not related to the MDS and said that maybe I need to consult a Dermatologist. In the past my Derm. gave me some cortizone cream for a benign growth I had on my lip and that seems to be slowly removing the bumps . I know we are told that we are suppose to keep a journal with our questions for the Team but I forgot mine the day I went to Moffitt and guess what I forgot to ask until I got home . And to the person that asked what b/p med I take its DOXAZOSIN , 8 MG . Hope all is well with you and stay positive !

[Marlene]

Hi Brenda,

IMO, I would look to taking a methyl form of B12 as well as a B complex with the usable forms of the vitamins. Being a vegetarian can very well result in low b12 stores. If you can get your zinc checked, that would be good too. B12 is needed to maintain health. The important blood/bone marrow nutrients are B12, folate, b6, copper, zinc and iron.

Shingles can appear on the face. Shingles usually present on only one side of the body starting from the spine and moving out along dermatones (zones on the skin where nerves branch out from the spine.) The path of the rash follows the nerve coming from the spine. You will usually feel tingling, pain or itching before you break out into the rash.

[Marlene]

Too much vitamin A can be problematic too. You may be getting too much from your fish oil especially if it's cod liver oil. You may want to switch to flax seed oil for a month and see if you get any relief.

Another thing to consider is wheat/gluten. I would stop that too and see how you do.

Look up cheilitis and see if that resonates.

The B vitamins and zinc should be helpful.

[Lulu]

I would second what Marlene says, and also cut out all sweet foods and refined carbs. There is some research suggesting high carb diets worsen skin conditions like acne. A very low GI diet may help.

[Bambam]

Thanks for all your thoughts. My skin has always been good until recently and I'm still searching for reasons for the change! After considering your kind input,
... I do not take any B12 supplements and the fish oil is not cod liver and was suggested by the integrated cancer centre affiliated with our cancer centre ... My ongoing research suggests that I may not be utilizing B12 properly, hence the buildup. My Gp has seen it in MDS patients before too. I hardly eat any refined carbs and am very health conscious about my diet, always consuming six servings of veggies daily along with high quality protein and fruit. In fact I was given 10/10 by my nutritionist! I am wondering about cheilitis as my lip continues swollen, dry and cracked. Have a wonderful day, and thank you again.

[Bambam]

Well... the itchy nodules continue to appear ... now there are many on my face, and others coming on my shoulder, torso and body. They start as an itch and then when I scratch, they hurt. I am not taking any meds and latest results show Hb 92, Neutrophils 3.4 and Platelets 180. All three are trending downwards since the nodules first appeared in April. Blasts, Teardrop and Elliptical Cells starting to appear in bloodwork.
My GP referred me to a Dermatologist, and a skin biopsy shows that the nodules are related to my "blood disorder", MDS. Therefore, the Dermatologist says he can do nothing ... that this is a Hemo problem that requires treatment of the underlying condition. I am so frightened and feel like a freak with these lumps on my face, and so itchy. Has anybody heard of anything relating to skin with untreated :confused:MDS before?

[Marlene]

You may want to look at Sweet's syndrome that can be associated with MDS.

[Bambam]

Thanks for the thought, Marlene. I checked it out but while there are some similarities, I don't have fever and also have them on my leg. I found one image in google images that looks like mine ... But I also am losing weight and have developed a dry cough. The Skin Specialist now wants to see me in August (perhaps he needs to learn more about MDS.) HOPE I GET SOME ANSWERS SOON,

[Lbrown]

Celiac or gluten sensitivity can cause rash and weight loss. I just had a 5 yr old rash clear up by going gluten free, doesn't hurt to try. It was *extremely* itchy!

Good luck,
Deb

[Bambam]

Hi Deb, we've tried the gluten route, and even done the blood tests ... the skin biopsy shows that this is definitely related to "the underlying blood condition." What exactly it says, I do not know, but I will ask for a copy of the biopsy report today. It's so weird that now they either come in pairs, multiples or singles - and always start with an itch and then hurt when I scratch. Thank you for your suggestions, though, I do appreciate you taking the time to share.

[Bambam]

Today I asked for a copy of the skin biopsy report and as I had thought, it is recommending further bone marrow and skin biopsies but it also gives a diagnosis that suggests Leukemia Cutis. I am not surprised, but somehow, seeing this in writing confirmed my worst fears, for I had wondered if my Low Risk MDS was progressing to AML. Everything I have read about skin and MDS pointed in that direction, but I so wanted to be wrong in this case!
I see my Hematologist on Tuesday and will have lots of questions but in the meantime, want to remind you to not ignore any new or different symptoms you may notice - I had red itchy spots on my neck back in April and the condition changed over time. I'm not sure of what is happening from here, but I must try to be strong for my family's sake.

[Bambam]

Well, my worst fears have been confirmed. My low-risk MDS, diagnosed one year ago, has changed to Acute Lyeloid Leukemia. I felt the changes in April, when I started to notice the skin lesions on my neck. Since then, I developed a swollen top lip, lumps and bumps all over my face, and in random places on my body ... some of them very itchy and some very sore. We're still not sure what the skin things are, despite suspicion of Leukemia Cutis from skin biopsy, but I must now prepare to go into hospital for up to a month for chemotherapy. Scared but glad I'm in excellent hands at Vancouver General Hospital.

[Neil Cuadra]

I'm sorry they've confirmed what you suspected, Bambam. I hope your treatment goes well and that you'll be able to keep up your nutritious diet as much as possible.

[billyb]

BamBam, We are praying for strength for you as you undergo induction, hopefully you will see results in the first week, Stay Strong, You are not alone.......Billy and Tina

[Lbrown]

Sorry to hear. Good luck.

Deb

[Bambam]

I just want to thank you for your thoughtful support. Facing mortality head in does not feel as awful as I had imagined. But being a take-charge person, there's so much to do!! Blessings to you all and may love and strength guff yours and your loved ones' journeys

[tytd]

Hello Bambam,
I am so sorry to hear that your disease has progressed to AML. I know it must be a shock to you. I wish you the best of luck in obtaining remission with induction chemo and hope that you might be eligible for BMT. I wanted to thank you for educating us about the importance of being aware that certain unusual skin lesions, itching, blisters, etc can occur in MDS patients and can portend or predict progression of the disease. Although rare, I have heard of similar cases who developed the rash long before leukemia was suspect from the blood or bone marrow. Of course we all get the normal age related skin lesions or sun related skin cancers but it is good to be aware of any new skin lesions like you describe and tell our hematologists about them. Good luck and keep us informed about how you are doing. Thanks tytd

[LizR]

I'm so sorry to hear your news. A year seems soon from low-risk MDS to AML. You mentioned you have good WBCs, neutrophils and platelets but bad RBCs. My husband's numbers are the same and it's certainly different than most MDS patients.

Take good care and we're sending our best wishes your way. Liz & Bob

[Marlene]

So sorry to hear this. Wishing you the best.

M

[Bambam]

This is a phrase I have chosen to meditate on. Each day I will have a word... Yesterday was GRATITUDE and today is FORGIVENESS. I'm grateful for your support and well wises

[bebop]

BamBam I am sorry to read this news. I feel though you are a fighter! You are in my prayers and please keep us posted. Thinking of you.

[Bambam]

This particular trial is a variation on the traditional 7-3. Same drugs, but given through liposome infusion on days 1,3,5. Phase 2 trials suggested some promising data for AML resulting froMDS. so my fingers are crossed. My roomie just had a transplant, 100% match unformed donor registry. It took a year to diagnose her MDS ... But then it is a syndrome isn't it! With many variations. Goal one is remission. Goal 2 transplant. Here's hoping and praying ...thanks for your love and support

[Susan L]

Best wishes to you and your roomie! Hope all goes well -