Excessive Itching Post-Transplant

[RuthWells]

Hi all -- I'm not a frequent poster, but have been lurking for quite a while (and did introduce myself, way back when).

I'm posting today with a question, not for myself, but for my father.  He has polycystic kidney disease, age 68.  He has had has 2 kidney transplants (1981 and 2000), developed diabetes from long-time steriod use following the first transplant, and is now maintained on what he calls a very low dose of Prograf. 

In addition, a tainted blood transfusion from the 1981 surgery led to hepatitis C and liver failure, and he was very lucky to receive a liver transplant in 2004.

Other health complications include gout, peripheral neuropathy in his feet, and compromised circulation to his legs.

So, with all of that LENGTHY background <g>, here's my question.  He has been extremely itchy all over his body (trunk, arms & legs) for months and months now.  Assuming it was just very dry skin, he has switched to all of the gentle soaps, natural lotions, etc. etc.  The dermotologist has done nothing more than recommend oatmeal or Dove soap and Aveeno lotion, none of which gives him relief for more than an hour or so.

I know it sounds like a fairly minor concern, but he is really in huge discomfort and wakes up at night due to the itching.  I'm wondering whether anyone else has experienced this?  I'm thinking there must be something else going on other than "dry skin" -- like, some side effect from all the years on immunosuppresants? 

Any similar experiences or ideas for combatting this would be most appreciated!

[monrein]

Hi RW.  This is a common problem in the ESRD population and it seems that it is poorly understood and remains a huge challenge for the medical profession.  It's related to being anemic it seems and different things are available to try but not all work for all people.  I don't think it's related to the immunosuppressants but rather to the anemia and the toxin buildup in the blood.  Is your Dad on dialysis?  If he is you could check into the adequacy of his treatments.  I would try to speak to a nephrologist rather than a dermatologist because it's not just extremely dry skin that's causing this itchiness (pruritus is the medical term for it).

I've tried to put a link here for one article I found on the internet by typing in pruritus in dialysis patients, so if the link doesn't work you could try that.  I've experienced the crazy itchiness and it is really frustrating.  You just want to rip the skin right off.  Some try baking soda in the bath water, or oatmeal, lotions etc but those are temporary fixes for sure.

Good luck and keep bugging the docs on your Dad's behalf.  It's NOT a minor concern at all when you have to live with it.

[RuthWells]

Thanks for the info, Monrein.  I suspected the dermotologist was not the right person for this particular issue.  I'll hop on the internetz and see what I can dig up on pruritus.

I should have been clearer in my post -- dad is on a successful 2nd kidney transplant, so no need for dialysis at this time.  His clearance numbers are great -- better than mine <g>.  I'll ask him whether they've checked for anemia.  He's just so fed up at this point (patience is not one of his virtues) that the whole topic makes him very grumpy.  I dropped about $45 at the health food store on various recommended high-end skin products, and nothing is working for him. Very discouraging.

[Romona]

I think that may be related to Prograf. I haven't read the the side effects in awhile.

[mcjane]

Hi Ruth,
Here are side effects of Prograf. If you scroll down to SEVERE side effects, third paragraf,  you will see itching.
Something you might want to talk over with a specialist, could be serious specially if he has more than one symptom.
Liver problems can cause severe itching, might want to check that out too.


Possible side effects of Prograf :
All medicines may cause side effects, but many people have no, or minor, side effects. Check with your doctor if any of these most COMMON side effects persist or become bothersome:

Back pain; constipation; diarrhea; dizziness; headache; joint pain; loss of appetite; nausea; stomach pain or upset; trouble sleeping; vomiting.

Seek medical attention right away if any of these SEVERE side effects occur:
Severe allergic reactions (rash; hives; itching; difficulty breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); confusion; dark urine; decreased coordination; chest pain; diabetes (frequent urination, increased thirst or hunger); fast or irregular heartbeat; mental or mood changes (eg, anxiety, confusion) one-sided weakness; painful urination or changes in the amount of urine; red, swollen, blistered, or peeling skin; seizures; severe or persistent dizziness or headache; shortness of breath; swelling of the hands, feet, or legs; tingling or numbness in the hands or feet; tremor; unusual bruising or bleeding; unusual lumps or skin lesions; unusual weakness or tiredness; vision changes; yellowing of the skin or eyes

[RuthWells]

Thanks, McJane.  He's been on prograf for 8 years, now on very small doses compared with previously, and the itching is a pretty new symptom (less than 1 year).  So he completely discounts the possibility that it's prograf related.  And, as a liver transplant patient, his liver function gets checked regularly and no problems there.  Thanks for the ideas, though.

After one week using a soap from Kiss My Face that is olive-oil based, he is getting a little relief, so that's something.  We'll keep on trying new things and hope that medical science comes up with some ideas soon....

[okarol]

Pruritus: Pruritus is the medical word for itching. People with hepatitis C sometimes have pruritus. Often, it is limited to the palms of the hands and/or the soles of the feet. However, some people have generalized pruritus, meaning they itch all over. From http://www.janis7hepc.com/Symptoms.htm#itching

"... itching rashes are bothersome and may be difficult to manage." From Hepatitis C-Related Renal Disease: An Unrealized Challenge http://www.kidney.org/professionals/kls/CEhepCMonograph_treatment.cfm

A common cause of itching is a high level of phosphorus in the body, but if his labs are ok then this may not be the cause.

Sorry that's all I can find - I hope you can find some help for him. (All I can think of is an Epsom Salts bath.

 

[RuthWells]

Okarol, you are a wonderful resource -- thanks for this!  I'll make sure they're keeping tabs on his phosphorus.