External symptoms from MDS?

[Jill D]

Does anyone have itching on arms and legs from MDS? My dad's doctor says he has MDS, which he does have low blood platelets, but no where do I read that itching is from MDS, which his doctor says is because of the low platelets.

[Marlene]

John would get hives, and still does, but it was worse when his platelets were low. As his platelets went up, the hives would be less. His are around 80K now and he gets hive when we go for walks. He used to take zyrtec for them. So it could be a histamine reaction.

[Charlie]

Thank you for that post about the itching, just yesterday my husband was complaining of itching . He was diagnoised in 2007 with MDS.

[Chirley]

Hi, I wrote some time ago that I had severe intractable itching. I asked my haematologist about it and he acted as if he had never heard of it before in relation to bone marrow diseases.

I don't have a platelet problem just decreased reds and whites.

I am totally confused because Birgitta responded that it is common among people with haematology problems and also, if you Google it, it seems to be a common haematology symptom.

So why would my doctor not know about it? He is a very experienced and educated doctor.

I sympathise with anyone who suffers from this, it's horrible.

Chirley

[Birgitta-A]

Hi Chirley,
If your doctor was treating patients with myeloproliferative diseases he should be aware of that itching is a very serious problem (actually a reason for suicide) for about 80% of these patients .
http://bloodjournal.hematologylibrar...ll/113/23/5697

Then anemia with iron deficiency can give itching:
http://www.ingentaconnect.com/conten...00001/art00004

Was it not possible to do something (operation?) to the bleeding vessels in your intestines?
Kind regards
Birgitta-A

[Charlie]

Husband has low red,white, and platlets extremely low running under 20,000. Hope MD Anderson can help us!

[Chirley]

Hello Birgitta,

I can understand people who can no longer tolerate the itching and make a decision to suicide. Luckily, I still have some nights when the itching is not such a problem and I can get the occassional good nights sleep. On the bad nights, I quite often think that I am almost at the stage when I can't take it any more.

As for the surgery. Although I have had numerous tests, including gastroscopies (about 12 of them) pill cams (3 of them) balloon enteroscopy
(1) colonoscopies (about 8) they still don't know where the bleeding is coming from. Faecal occult blood is positive but why? The assumption is that it's small bowel but that is a guess. My doctor wanted to do an angiogram where they inject an isotope. I don't know what the test is called and how it's performed but I refused on the basis that if it's my small bowel that's the problem, then I wouldn't agree to any surgery anyway. The GI bleeding is a blessing in disguise because I don't get iron overload from the transfusions which I would still require because of the marrow problem. Also, I have a fear of abdominal surgery since one of my friends died many years ago after having small bowel surgery. She died an awful death in pain and vomiting faeces despite having a naso gastric tube in to drain the bowel.

I have also been told that it may be that the Barretts oesophagus that I have may be slowly leaking blood as well although it has never been seen on gastroscopy.

All in all, I have had enough of the investigations without any answers and refuse to have any further investigations unless there is some clinical change.

I'm not usually obstructive when it comes to my health but enough is enough.

I had better go, my little dog just started chasing my chickens. If I don't rescue her, the chickens will start pecking her.

Chirley

[Birgitta-A]

Hi Chirley,
OK. I understand that you have had enough investigations - I thought that they really had found some bleeding vessels that they perhaps could do something about. Hope the reseachers who try to find causes for irching will have some success soon!
Kind regards
Birgitta-A

[towncarlady]

Unfortunately, there seem to be many different diagnosis possibilities with each of us. Usually, our predisposition to be intolerant of drugs and other health issues affect our reactions.....both physical and emotional. Frankly, there is so much that is unknown. The sad fact is that many things are not changing as far as meds that work and treatment. My first child was born with aplastic anemia, living only on transfusions a day short of 3 months. The treatment then was prednisone and only talk in the media in 1968 about bone marrow transplants. From what I have read, nothing much has changed. So, you members that have been reading my posts may understand better that this MDS diagnosis was a "punch in my gut"; plus, I probably know far too much for some doctors.

I am impressed with the fact that you members are so knowledgeable. I am an educator, so my doctors already have found out that I can read journal articles and figure out some things for myself. Do not be afraid to study, ask questions, and be bold enough to say "NO". This is your body; you know you better than anyone.

Keep on believing and fighting! It is not easy, but what we learn may help another all around the world! Birgette.....you either study 24-7 or have a medical background. You have been a blessing to me.

[Birgitta-A]

Hi towncarlady,
How sad with your first child and AA.

You are right - I do have a medical background that makes it easier for me to read reports. You know I belong to 5 support groups - in one of them I get many links to info every day. Then I have google alerts for a lot of drugs and many drug factories as favorites so I can follow their research every day. Then I look at PubMed every week to see if there are any interesting reports about MDS. I work about 2 hours a day at my pc to keep updated and post to the 5 groups.
Kind regards
Birgitta-A

[helen c.]

about 4 weeks ago my husbands e-jade was increased to 500 mg a day and now he can go 2 weeks in between transfusions and platelets have also increased up from the 20.s to 90,s it has to be the e-jade does this mean his marrow is recovering or is this false hope

[Birgitta-A]

Hi helen c,
They think that Exjade decreases the oxidative stress in the red blood cells and this can result in a better bone marrow function. My HGB increases when I get Exjade but unfortunately the WBCs decreases. I have not read anything about the impact on platelets.
http://ash.confex.com/ash/2008/webpr...Paper7552.html
Kind regards
Birgitta-A

[Data]

I realize this an old thread but was hoping some of the folks that have commented might have some new information. I have had itching so bad I can hardly stand it. My back and legs have sores from scratching so much. I have asked several doctors and got a couple different medications none of which worked.

Thanks

Data

[Cheryl C]

This is no help, but I had hives when my blast count was above normal. They disappeared when my blast count dropped. My platelets have never been below 90k and white cells are my biggest problem.

Lavender oil applied to individual hives may bring some relief.

[Chirley]

I have to agree, since my blasts have dropped...no more itch problem, sorry, not much help.

I also use sorbolene cream on my wet skin after my shower and just towel dry as normal.

[maggiemag]

Hi there. I had intense itching when I went back on Revlimid this time. I was given SARNA cream, and it worked right away! I didn't expect it to do anything, since it didn't seem to have anything special in it, but I was glad to be proven wrong. May be worth a shot?

[Data]

Cheryl, Chirley, & Maggie,
Thanks for your inputs. I am about to go nuts. This has been going on for 6 months at least and seems to be getting worse.
I have been trying to wait until I sdee my hematologist/oncologist on 2 Dec but it is tough. I have taken the meds the docs
have prescribed and several OTC creams but none have worked. I have scratched until I bleed and have ruined several T-shirts.
I know I shouldn't scratch but it it just hard not to.

My blast count at on my last biopsy was 0.5%. My platelets were at 31K, hemoglobulin at 8.8, and neutrophils were at 1.0.
Not too bad I guess.

Again thanks for the input.

Data

[Barbara K]

Hi, Data--I don't have any answers for you, but my husband has a profile somewhat similar to yours, and just a couple of days ago he was complaining about the incredibly itchy little bumps he gets around his torso. He says his are worse in winter, and I had just assumed it was weather related. It would never have occurred to me to look for connections to his blood problems. So thanks for raising the issue. My husband uses a ton of Aquaphor (I think that's what it's called) and other lotions, but he says that when it starts up nothing really helps. If we come across any new ideas that haven't already been suggested, we'll let you know.

[bailie]

Goldbond Medicated Lotion is the only over-the-counter lotion that works for me to control itching and it works great.

[Hopeful]

Hi Data,

I'd recommend seeing a good dermatologist, as it may not be related to the MDS. I had a rash that turned out to be contact dermatitis with an over-active immune response. My dermatologist picked up on it right away, prescribed a prednisone based cream (prescription), and it was totally gone in less than a week. My hematologist had no idea what it was.

[Chirley]

Is there a rash? I never had one...just intense itching. It would be in one spot and then ten seconds later another spot entirely different. It was sudden and nasty and anywhere and everywhere.....it drove me mad. Scratching it did nothing but I felt tempted to tear out the part of the skin that was itching just to remove the skin so it couldn't itch any more.


I'm so glad I don't get it any more.

I hope you find an answer.

[bebop]

they always gave my dad benedryl when he got his transfusions to help with the itching.