GocartMoz

Uncontrollable Itching

16 posts in this topic

I have had uncontollable itching for quite some time. It seems to coincide with my taper off of Prednisone, which I am now off completely. However, as I tapered off the drug, the itching got worse and now it is uncontollable. It itches literally all over the body and I am ripping my skin, especially on the arms and legs, to pieces because of the scratching. The skin also burns and I have a rash which seems to be everywhere except my face, though the head itches too. I have tried what seems like everything, including over the counter stuff as well as a number of prescription meds, creams, sprays, etc. and nothing seems to touch it. At first, the doctors seemed to think it might be some form of graft v. host disease, as a result of my transplant, even though it is very unlikely in an autologous transplant, but they seem to be backing away from that. In any event, I have gotten no relief and it is becoming nearly impossible to deal with. I had been on prednisone for nearly 1 1/2 years before finally getting of it and I don't want to go on it again, but I fear it is the only thing that will give me relief. I go back to Duke on December 3 for a follow-up. Any suggestions in the meantime?

 

Thanks,

 

Dave

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Good Morning Dave,

Have you tried the hydroxyzine hci yet? I was on the 50 mg and now I take the 25 mgs because they were making me so sleepy. It has help tremendously. Though my sister in Az has it like you have and is being retested at her algerist because she can't stop the itch that once you itch it, it only gets worse. She also gets shots weekly because hers is so bad. Mine really gets bad for a few weeks several times a year. Though, I do get a break in between. If you haven't tried this prescription then maybe it might help you. The texture of my skin has changed from all the itching I have done the past 3 or 4 years. If feels thicker and tougher on the upper hands and wrists especially. And the bicept to shoulder area. I feel for you good buddy. It is imbarrising to have an itch that you can't contol and you cand relieve, and you find people starring at you but, you just can't not itch it. Does your go from side to side? I might itch only on one side for a few days then it seems to jump to the other side. Uggh! Do you get these very tiny (like grains of salt) that you scratch and pick off your skin in a few areas? I think they are like little calcium deposits. Too early in the morning to think straight. I hope this message makes sense. Sheryl


Strength and Warmth,

Sheryl

 

Sheryl Doom

ISN Support Specialist

(Retired) ISN Chat Moderator

International Scleroderma Network (ISN)

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Dave,

 

I'm so sorry to hear that you're still itching. I'm sure you have tried every over the counter lotion or cream on the market. I've had a lot a success from one lotion and will be happy to give you the name if you send me a message. You may have already tried it, but if not, I hope it helps. I also have Dr. Shanahan's email address and phone number in Wilmington if you want to contact him. I'm sure he would be more than happy to help.

 

Other than the terrible itching, how are you feeling? Are you feeling the benefits of the stem cell transplant?

 

Warmly,

April

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Dave glad to see you post but sorry it's because of the itch. DR. Shanahan gave Birdman a script a steroid cream. But he is also on Prednisone and I think thats helping him. He itches all over all the time.

Wife


Hugs for All,

 

Julie (Bird Lady)

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Thanks for all your replies,

 

Sheryl I am on hydroxyzine now and unfortunately it doesn't seem to touch it. Thanks also April, I will e-mail you privately to get the information. It is funny, last night as I was scratching myself to death I was online looking for Dr. Shanahan's e-mail to see if he could help. I know that he has moved to Wilmington and I know the name of his practice, but I couldn't find an e-mail address. We apparently were thinking the same thing. I am doing well aside from the itching. I truly believe the stem cell really helped. The skin is softening, I am holding down food and am in Physical Therapy and getting stronger. I have no pain, am back to work full time as of a few weeks ago, the reflux is controlled and my PFT's have remained stable. The Raynauds is still there, but in Florida it doesn't bother me much. If I could just get this itching under control I would be a new person. Thank you also Birdman and Barefut for your posts, I hope everyone is well.

 

Dave

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Sheryl,

 

I forgot to answer your other question. The itching does move daily, though I wouldn't say side to side. One day it is the arms, next the legs, next the chest and so on. Often it is all over. I do get those little white spots as well, especially on the legs.

 

Thanks again for your input.

 

Dave

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Oh, I'm so sorry ...I know itching. I've have had psoriasis for 52 years , although it had never really been a problem UNTIL--- the scleroderma -- 3 years ago ... Now I stayed broke out all the time , I didn't even know what this burning / itching / rash was. So when my rheumatologist did a skin scraping test and told me it was the psoriasis I was really surprised . I wish I could say I found some pill or cream that helps me. I've never really been on pred. And I don't want to...

When the burning and itching are more than I can stand - I soak in the tub .[ Not to hot or cold ] I don't towel dry , I rub my whole body down with a cream used for dry cracking feet . It comes in a tube. This helps but it's only temp. And I only use the softest of linens on my bed. Regular linens feel like sand paper to my skin .

 

It's awful what the sclero can do to us.

 

I hope you will find the cause and find some thing to help you

 

Katherine

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Dave:

 

I had that too, but especially at night. As quick as it came, it left. Took about a month. I take so much medication, I not quite sure it left on it's own, or was part of a medication dosage.


Tru

 

It is what it is...........

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H Katherine,

 

I also have Psoriasis/psoriatic arthritis, along with sclero and the combination of the two is something else.

Early in my diagnosis ... of sclero.. the nerve endings were right at the surface (I only imagine it to be likened to shingles, in regard to the pain) and because my body was 98% involved, the only thing that worked (for me) was MTX injections. After 13 years of used, I was FINALLY able to cease the injections 3 years ago in March.

 

Scleroderma and Psoriasis are arch enemies, which makes the symptoms of the two quite miserable.

 

Have you tried MTX for treatment of your Psoriasis?

 

Hugs, Susie


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Hello, I have uncontrollable itching also and jerky movements that are coming from two different issues, one 3 disc, zosters (shingles) outbreaks, and liver problems. My doctor gave me Gabapentin 600mg; it says to take one every four hours but sometimes I need to double up but I have Hepatitis C and it is heading downhill so comfort is my key goal. I have scars on arms and legs from the itching. Good luck.

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Hi Mibroom,

 

Welcome to these forums!

 

I'm sorry to hear that you're suffering with the unpleasant symptom of itching, which can be so troublesome. I've included a link to our medical page on Pruritus which I hope you'll find informative and helpful.

 

Please do keep posting!

 

Kind regards,


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Hello Mibroom

 

Welcome to the forums. I understand that liver problems can cause itching but you probably already know that. I take gabapentin at the maximum dose of 1200mg 3 times a day and I actually think it helps the nerve pain.

 

I am with you on the quality vs quantity issue, comfort is more important although I am sorry you are at such a place.

 

Take care and I hope you will post more.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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I had bad itch in the first 6 years of scleroderma, tried everything. In hot weather it was worse. I liked a moisturising cream with 'cooling menthol', which gave me a little relief from the 'prickly heat rash' kind of feeling. I'm in Australia but pretty sure you can get the brand over there, its not expensive and the products are soothing, based on oatmeal for skin irritation. worth a try. You can PM me for the brand name, if you want.

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