I have posted some pictures of my hands in my profile. I have never had this before, or during tx. It started about 3 weeks after tx, blisters and sores develop and heals slowly. My skin breaks, tears and cracks easily. Has anyone experienced this and if so what can be done about it?
I haven't made it to the dermatologist yet, as I am too busy going to other doctors with more important issues all treated related.
I am not having the blisters, but I have been having more issues with rashes post tx than during. My resulting sores take a very long time to heal, but I was thinking that was because my whites are still borderline low.
So basically, I just came by to offer support....wish I had an answer, but I am sure someone else will.
Hang in there....you've come this far, you'll get through this too.
glad to hear you are post treatment. are you pcr negative? I am also in MI - metro detroit and will be 52 in nov. Don't know about the hand thing - just hope your liver is no longer under assault.
I developed a rare skin condition, caused by all the interferon treatments, most likely... I was getting hives and itching from getting exposed to sunlight or hot baths/showers. I went to the dermatologist and she did a skin biopsy and it came back with a pathology report showing this long named thing that the first word is Telangiectasia..., The initials of the whole thing are T.M.E.P. There's very little about it on the internet. It's considered an orphan disease. I'm like,....wonderful, that's just what I needed!! Not! Anyhow, basically, if I stay out of the sunlight and avoid hot showers/baths, I don't get the itching and hives. This is doable, just not alot of fun sometimes. I can handle stuff like walking back and forth from my car to store, home to car, etc. and driving..., in short sleeves (because I have dark tint on my windows)..., but I can't stand out in the parking lot for 15 min or more in short sleeves and short, or I get the itching and hives back. So, needless to say, I'm not tan! If I have to be outside for a longer period, I have to be completely covered up from head to toe. My showers are no longer the relaxing, soothing to muscles sort of thing. And hot tubs are out of the picture as well. But, I'm living with it and trying to not be dwelling on it. Things could be a whole lot worse and I have very little to gripe about. I just wanted to share my story with you. Thanks
Tippy, the sores look an awful lot like mine did BUT mine was pre TX. Until you can get to the dermatologist wear gloves in the sun. The sun is what caused my blisters to surface. Granted I had porphyria and the TX & phlebotomies took care of it but staying out of the sun is the only thing that helped. I really, really wish Trin was here she knows so much more than I do.
The good thing with me is that I only have one little scar on my hands and if you look at my pics they were nasty.
Make your Derm appt, it takes a while to get in. Make sure you find one that is familiar with skin issues associated with infectious diseases (hep c to be exact) What is your ferritin level?
I too had so many doctors appts post TX, brain mri, endoscope, mri of the sinus, psych & psychologist, and on and on...........
Hang in there, it does get better. It took me a year and I still can't multitask and don't remember stuff I did last week but at least I feel good most of the time. Keep us updated!!!
Posting the photos was a great idea. Can you zoom them a bit more?
As Denise said, Trin may be able to help, although her hand issues were pre-tx. I'll email her and get back to you if I hear something.
I've been struggling with my own post-tx side effects and between that and being really busy, have disappeared into the woodwork. I had no idea you were having this and other post-tx problems.
I think the meds may be playing nasty and powerful games with us, me with my mind and you with your hands. Are the other post-tx issues you mention thyroid-related?
In the meantime, fellow birder, the goldfinches have finally found a secure place in the garden and are hanging around pretty much all the time. I'd lost hope that they'd make their home here because the shrill and aggressive crows kept chasing them away.
Yes, posting the pics was a great idea. I don't have any input for you on the cause of the blisters but I wish you the best with getting to the bottom of this. I'm sorry you're having other post-tx issues too. Keep us posted.
I ended TX 2.5 weeks ago and was feeling great the first 10 days or so and then I started to fade back into the sick/tired feeling. Still skin issues around and behind my ears (skin cracks open and weeps).
The post-TX mess keeps going. Such a disappointment to finish the meds and then have bizarre new SX pop up. Wish they had told us all to expect them so we'd be less freaked out and wondering if we are all starting new diseases. I developed the hives and sudden sun allergy at EOT; that took weeks to clear, plus more than a month longer for the last of the riba rash to disappear. Lots of other very goof ball stuff popped up and then popped away again.
At 12 wks past EOT, I am just recently declaring myself "well" and almost 100% recovered from chemo. Will wait until 6 mos. post to be completely sure I'm recovered. All this crazy post EOT mess requires a lot of patience, but I think the odds of any of us suddenly developing a brand new disease (rather than a delayed side effect) are actually pretty low. Good luck to us all.
I didn't write the following :) but I'm very happy to pass it on to you:
"Tippy's pictures do look like PCT. The fact that her skin
easily tears and takes a long time to heal is a good indication of PCT.
Remember your high ferritin levels towards the end of tx? That may have
happened to Tippy. It's the high levels of ferritin that cause toxicity to the
liver and skin. That's the basic explanation but there's a whole lot more to it
than that. Three things can primarily cause PCT, HCV exposure, excessive
alcohol use or hormonal treatment
The dermo will either take a biopsy of the blister, do a blood test or both.
Either way, she'll know if she has PCT. It is a chronic disorder so I could
understand post tx issues with it. The good thing is it easily managed with
phlebotomy. I've lucked out, no recurrence since phlebotomy but hepa did say
even if I SVR, may need an occasional blood letting if ferritin levels rise,
however, he thought the likelihood of that was very low.
Final advise to Tippy, get the test done and if positive for PCT, have
Ferritin level must be high for it to be PCT and the best part is PCT is
Tippy, I'm sorry you're having this new sx. The places on your hands look like some places on my lower legs, which have come up since I finished tx. They also begin as blisters, itchy, then turn into scabs which take forever to heal. I have scars on my lower legs from these things. I've thought about going to see the Derm but haven't done it yet. I did have some blisters pop up on my hands at one time post tx but they did not stay around so long.
I put it off and put off waiting for it to get better and it never did. by the time I walked into my GIs office he was like "holy mary mother of God what is wrong with you!!" I was like you don't know???And he sent me right over to the derm (probably figured I had a real infectious disease by this point because it was all over my face...so bad I swear you could see my heart beating in the welts!"
The derm took one look and said blah blah something eczema from the chemicals. Gave me a prescription and one minute after I used it the itching that drove me almost literally insane stopped.
I wish I had known it would really have been that easy!
It still comes back from time to time in flareups but is manageable now with the cream.
I googled T.M.E.P and there was info about it and pictures, one in particular of the hands. Mine looks just like that. Yes, indeed its very rare 1 out of 100,000 will get this. They also stated there is no cure and in some cases will attack the nervous system. They said most people are born with it, and is a autoimmune disease that can surface in the 40's and 50's. In our case it would be brought on by the interferon , I am assuming. This is some serious stuff and I am praying I don't have this. I am so sorry you do.
My hands look similar to your picture but not as bad, yet. These blister, sores did not appear until I went to the lake and spent a few hours in the sun a month after tx. I was loaded down with max sunscreen. I am pretty sure the sun caused this, because it appeared a few days later. No more sun! I never thought about wearing gloves while driving, that sun always shining on my hands and arms. I'll be wearing them tomorrow.
To lapis and ny I too have them on my lower legs but not as bad as my hands. Time to stop fooling around and get to the dermatologist soon. I was waiting for it go away but I doubt that will happen. Better take care of it before it spreads to my face.
Thanks, and just wondered if I was a isolated case with this crapola.
Tippy, I felt like a fool wearing the gloves but it stopped the blisters until I got it under control. Even 1 minute in the sun was a new blister for me. Glad you are seeing the derm sooner than later.
Dermatologist highly suspects its PCT but won't confirm until the ferritin blood work and 24 hour urine test is back. He also did a biopsy and prescribed some cream.
It was an interesting visit because he called all the doctors ( 5 ) in his practice into the room and had me repeat my Hep C story and the treatment drugs I was on. They were intrigue with my story. They are all perplexed as to why this happened now that my liver enzymes are well under the normal range and the virus is gone. I heard one of them say something is going on with my liver. Oh my, whats next?
My doc wrote down all three drugs of tx, and said he would research them and try to find out the post side effects. I'm sure he has more sources of information available than we do on the internet. Interested to see what he finds.
My visit today explains my thick long facial hair and they took pictures of that also. What they saw is nothing because I trim it every few days. The hair is a symptom of PCT also.
I go back in two weeks so I'll keep you posted. Doctor visit tomorrow and Monday also. I've had more visits post tx than during. Its always something!
I didn't write the following. Shall we say it's from Portinity or maybe Portrinity?
Here it is:
Your hands look exactly like mine did. Blisters and sores are identical to what I had.
I will be very surprised if it's not PCT.
Your hepa or gastro guy can have the test done too. It just so happened I went to the dermatologist first and he did a biopsy of a blister. Ironically, I had an appointment with a gastro the next week because I had tummy issues and showed him my hands. He tested me for HCV and the rest is history.
Denise only did around 5 phlebotomy treatments I think. I did 10 or 12, something like that. My ferritin level was near 1000 and my hgb was 17 before starting phlebotomy and normal ferritin is 12-150 for females and hgb 12-15. At the end of phlebotomy treatment, ferritin was 17 and hgb was 12.
I've had no recurrence but that remains to be seen I suppose. It is a chronic disorder.
Chloroquine is a drug used to treat PCT also, but it can cause anemia very very quickly and you must be monitored often. I don't think it's very liver friendly but I could be wrong about that. Blood letting really is the safest, most effective way to treat PCT. Therapeutic phlebotomies can be done at your local blood bank such as The Red Cross, Mobile Blood Banks, Hospitals, Clinics, Community Blood Centres, Work-base Drives. Your doctor will need to write a referral because your session is for therapeutic purposes and outside the usual time frame allowed for general donations. The Blood Connection in my city did my therapeutic sessions for free. It's a service they provide for patients with PCT or Haemochromatosis. About 500 mls or one pint is collected, it takes about 10-15 minutes. You sit for 5-10 minutes afterwards, drink juice or water and eat a cracker. Then you can go. They will test your hgb prior to each session.
Normally, they don't want you to go below 12 and I had to skip several sessions because my hgb was too low.
Just wanted to give you some general info and hope things work out for you. Wishing you SVR too....
And further to T-rin's input:
I never had the facial hair but it is definitely a symptom associated with PCT...
PCT can be hereditary. Not knowledgeable enough to list the dynamics behind it but some have the disorder due to an inherent chromosome/gene factor.
I feel compelled to help other PCT sufferers. It's a lousy disease and the more you know about it the easier it becomes. There is a light at the end of the tunnel when treating PCT, just getting there is difficult.
That's an article tying PCT to ribivirin. A little blood-letting like in old English days? Sounds easy enough. Chalk another one up to bizarre side effects. They sure do get old. Sure hope they figure it out and fix it soon. Takes 6 months to get ALL of the ribivirin out. Maybe it will just require some treatment now and then move along on it's own when you get further away from TX. Hope so.
I just read that insomnia is associated with porphyria and that there are many types, including PCT:
"Since PCT is a chronic condition, a comprehensive management of the disease is the most effective means of treatment. Primarily, it is key that patients diagnosed with PCT avoid alcohol consumption, iron supplements, excess exposure to sunlight (especially in the summer), as well as estrogen and chlorinated cyclic hydrocarbons, all of which can potentially exacerbate the disorder. Additionally, the management of excess iron (due to the commonality of hemochromatosis in PCT patients) can be achieved through phlebotomy, whereby blood is systematically drained from the patient."
newleaf, it sounds easy enough but with porphyria (PCT) the skin and underlying tissues scar something terrible. After all the bloodwork my inner elbow areas of my arms are so scarred that the thought of a needle that size makes me physicaly ill. Even with regular bloodwork they have to go through scar tissue to get my veins. Trin might not have the scars and Tippy probably doesn't since hers just surfaced but bloodwork is painful for me. Gimme the friggin' leeches, eewww that thought makes me gag.
Who knows what the riba ends up doing but that is the first I heard if it causing PCT
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