Scleroderma itching Problem

[Anonymous]

My mom was told by the doctor she had scleroderma in January 2008. The affected area  is on her hands, arms and legs. She also has GAVE in her stomach. GAVE is a condition which makes parts of stomach look like a watermelon and leak blood causing the person to be anemic.

My mom's biggest problem is the intense itching from the scleroderma it does not allow her to sleep at night. Her legs and hands are so swollen and painful.

Does anyone have any ideas to help with the itching? She has tried so many lotions from over the counter to dermatologist prescribed. She is on Minocyclene 100 mg twice per day and is having light therapy three times per week.

We have an appointment in July with Dr. S in Ida Grove but I hate to see her in the pain she is having.

This is a terrible sickness. The person and the loved ones all suffer.

I would appreciate any feedback.

Thank you,

Tony Reis

[Maz]

Hi Tony,

Welcome to the RBF bulletin board! I'm sure you'll get some great support from all the scleroderma folk here, but in the meantime I've gone through the old bulletin board archives and pulled up the following old posts (below) on scleroderma and itching. The first one from Bill H also talks about “watermelon stomach.”

Hope these help your Mom a bit! It's very early days for her still, but we have some oldtimers here who will give her quite a bit of encouragement, as they are now in or close to remission. There are also some new scleroderma APers who will be going through many of the same your Mom is going through, as she progresses back to health.

Peace, Maz

 

Posted by Bill H SD; AP 4y on Sun – Jan 20 – 11:26am:

If localized itching is relieved by topical moisturizers it may be a good sign that it is simply a dry skin problem. However, my itching was bilateral and due to anemia from blood leakage in the stomach lining (watermelon stomach) a not uncommon condition in systemic scleroderma. Itching, or pruritis, is a well-known symptom of anemia. The risk of anemia is elevated in some chronic diseases including rheumatic disease. It may stem from internal bleeding, iron deficiency (decreased absorption) and Vitamin B12 deficiency. It may manifest itself even when symptoms of fatigue are not noticed, should be diagnosed specifically as to cause and treated accordingly. It is not a good idea to simply take iron tablet supplements. The specific cause of the anemia should been determined, and treatment prescribed, by a physician.

 Posted by Richie sd on Tue – Nov 1 – 3:54pm:

Hi
I itch in winter –the skin dries in the winter due to both the cold and the heat indoors and scleroderma folks are prone to itching for two reasons –The seasonal thing and according to doctor T -the skin heals from underneath –heres a few ideas that over the years help A bit –Sarna lotion –and Aveeno anti-itch –not 100 % but they provide some relief
Richie  

Posted by boo boo on Thu – May 17 – 7:33pm:

In Reply to: scleroderma morphea posted by Jen on Thu – May 17 – 6:35pm:

Hi Jen, Eleven years ago I was diagnosed with Linear/Morphea SD. It started as you describe with bruise like marks mostly on my torso along with tightening skin around waist, down the inside of my arms, inner thighs, and underarms. The most uncomfortable of the symptoms was the itching. I dealt with that using a variety of lotions and oatmeal baths. A doctor in Olympia, WA suggested PUVA treatments.(Type PUVA in your search engine to learn more.) I also took Minocycline 100mg daily during the two years of Puva treatments which were twice a week. Little by little all the marks and tightening left me. That was seven years ago. I still have a flare up of burning skin with a bit of itching here and there but nothing like the onset. All the discolorations have long gone. I find most of my problems are related to the type of material my clothes are made of. I wear mostly 100% cotton and am cautious of rough seams. I also experienced fatigue along with some joint pain early on. I really feel that I have been in a sort of remission in terms of the bruised and tightened skin. If you have any question you would like to ask, I would be more than happy to do my best to answer them. Warm regards, boo boo 

Posted by MaryP SD dx/ap 7/06 on Thu – Jan 17 – 8:10pm:

In Reply to: Re: itching posted by BudT, scleroderma on Thu – Jan 17 – 5:41pm:

I took Benedryl almost daily before I went to bed for a few months in the beginning. It definitely helped me sleep and calmed the itch factor. What also helped me was showering daily and slathering on a good moisturizer. I was amazed at how much lotion it took and how fast my scleroderma skin absorbed it! During the day at work, I would dampen my arms (worst itch area..legs too once in a while) and then lotion again. I did that I guess for about 5 months. Things are better now. Good luck!  

Posted by Lorraine – L.I. NY – sd 1 yr dx/7mos AP 2 months on Sun – Apr 15 – 9:59pm:

In Reply to: Re: Inflammation – SD posted by Richie -scleroderma on Sun – Apr 15 – 9:29pm:

Hi Richie
It's terrible at times. I find a great relief with baking soda. I have dead sea salts that relieve me too w/bak sod. I tried peroxide baths and the aveeno oatmeal but they didnt help as much. I have this gel with camphor in it. topical. Johnson and Johnson makes it.. called BandAid AntiItch Gel. It does help when I cant take the benedryl. Do you still get the itchies? They can be maddening!! Lorraine 

Posted by Richie -scleroderma on Wed – Mar 21 – 6:49pm:

In Reply to: Itching posted by Gary K. (PA) on Tue – Mar 20 – 8:56pm:

Hi
Another possibility according to DR T at Harvard is that it is a sign the skin is healing –The skin heals internally –With my scleroderma I had unreal itching for over two years –if nothing is open –I would suggest Sarna or Vaseline intensive care –these are two common over the counter products
Richie  

 

 

[Maz]

PS. Meant to also give you the link to the old bulletin board archives in case you wanted to do a search on any other topic in relation to scleroderma, too.

https://www.roadback.org/cgi-bin/eboard30/index.cgi?board=Main

You just click on the search button and type in your key words and you're set.

Peace, Maz

[edingSDAP7mos.]

I have that itching problem too. It is worst at night for me , it keeps me awake. My rheumy finally ordered atarax 2 tabs. 3x a day. I was too sedated so I stop taking it at daytime . 

 Rheumy suggested to take zyrtec in the morning to take care of daytime itching, then 2 tabs. atarax at night to give me a good night's sleep. It works!

I also use a lot of moisturizers, Eucerin anti itch lotion & sometimes aloe vera.

God bless.

Eding

[Anonymous]

Thank you for info. I will look into the site and try some of the remedies.

Tony Reis

[Randy]

Here's the big question:  Is the skin burning and itching due to SD or minocin / AP?

Tylenol helps me get back to sleep after the burning has woke me up in the middle of the night, like last night :X

I won't get into details now, but in general, I have a hard time determining if my burning symptoms are due to SD or herxies, or herxies that exacerbate SD symptoms. :doh:

I have certainly correlated herxie reactions that start 1-1.5 hrs after my 900mg clindy IVs, and a couple of days after my 3-4 days of IV's are over.

Randy

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[richie]

Hi

The skin itch is definitely due to scleroderma –bear in mind the skin has gone through profound changes in diffuse scleroderma

Richie

[Kim]

I'm still itching big time after a couple of years…….kim

[JeffN]

I did itch some before the AP I used Tylenol PM both then and after I started AP also. Before AP the issue was itching and the big problem I think was the pain in my hands was waking me up, lots of tossing and turning – after beginning AP different kind of itching. The Tylenol PM appeared to to help with both. After starting AP I did have itchie skin but not too bad, my Herxing was hive like and not the end of the world but a couple of months ago I had a beauty of a Herx on my upper body, nothing seemed to help much, took about six weeks to work through. after it abated my condition took a couple of steps up. Sort of like I got rid of a lot of bad stuff through the Herx.

[richie]

Hi Kim

I itched for a good four years or so –mainly in the winter —then it just stops —yours will stop also –hopefully real soon –Best

richie

[Kim]

Thanks Richie, great to hear that…..kim

[Lynne G.SD]

Hi Tony;
     I think I would have gone insane without Benedryl.That is the only thing that really worked for me.Jojoba oil is great as it has a molecule so small that it can even penetrate through a finger nail.It gets deep down into the skinrather than just moisturise the surface.   Lynne

[Author]

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