I have noticed lately that my first joint of my fingers are really wrinkled and cracked. like they would look if they were water logged.. all wrinkly.. sometimes they get sore in the cracks, almost like a paper cut, and I put cream on them and they heal. But lately I have had a hard time with my fingers on the keys. I cannot feel the nubby things on the F & J. I never know if my fingers are on the right keys without looking or watching what I type. I have been having a bad headache lately, and a low grade fever for 5 days now. I called my PCP today to make an appointment, cuz I think I am starting to get a sinus infection on the right side. I guess I will talk to her about the numbness , when I go tomorrow. Maybe I can get them to order a PCR test. Since my GI says not till after I am done for 6 mos ? Is that normal ? How often does everyone else get theres ? I had one at 12 - 13 wks, and another at 23. Both were UND. I am geno 1a, and on week 35 / 48, so nearing the end soon. But I think he says wants me to do 50 - 51 shots.. he used 12 months, as his marker, not 48 wks.. so his months equal 52.. LOL My Hemo dropped last week down to below 10. I think it was 9.3 or 9.7 would have to go pull it out. I am doing my procrit shot this evening. But I hate this feeling in my head, and my fingers being numb. Sunday I was trying to get some sun in my pool, and I had goosebumps. I could not get rid of the chills, and have been cold every since. I was not even in the water, was floating on this huge raft.. Its a king bed size raft.. LOL I look better with a bit of color. even though I know should not be in the sun. I don't stay out long. Just enough for a little bit of color. I was looking deathly for a while there. I have now lost 84 lbs. It keeps going and going ..... But its all good.. I just do not want it back . or any of the extra I gained after post tx 14 years ago. I started 14 years ago at 147 lbs. dropped to 85 on tx. then gained more than you would think my skin could stretch.. LOL up to 257. So I am doing great. diabetes in check, sugar level normal. I am sure she will ask if I am still on my meds for that. I am not. Its been so normal for months. Why put more chemical in there. I am so afraid I will gain it back and more.. and I don't want it.. I feel so much lighter, and can wear clothes I havent worn in years.. ( good thing I kept them, although may be out of style.. they fit ) better than my pants falling off.. LOL Well I haven't posted in a while and got carried away here. but wanted to see if anyone else has experienced the finger tip cracking and numbness ? Hope everyone is doing well.. and the sx are not tooo severe.
i don't have the cracking, but 5 weeks post tx i still have the numbness and tingling in fingers (through the 1st joint) and toes. it's 90 degrees and my fingertips and toes feel cold. it's not circulation, it's neuropathy from tx. i'm wearing thermal socks despite the heat. doc said it might take up to 3 months for it to resolve. other sx are mostly gone. during tx i used lots of aquaphor ointment on hands, feet and rest of body. that might have helped prevent skin cracking.
dperry.....Hi Sorry to hear that you are not feeling well. Maybe you should talk to your doctor about a test for Cryoglobulins. I had to tests but they were done incorrectly. Google and print out the procedure for test and bring it with you and MAKE SURE that they have an ON-SITE LAB. Also if it comes out negative (hopefully it will) they have to continue to check the blood sample for several days(from the sample you originally gave them) - can't remember how many but its 3 or 5 days, but anyhow you'll find it on the internet.
Web...Hi, The tingling and numbness comes and goes in my case. Your doctor says its from tx and it will go away? That would be good if it did. I hope so. Did he check you for Cryo at all or happen to mention it? I'll post an article, but there are alot of other articles on the internet about Cryo that talk about the tingling. I hope none of us have it though. If I already discussed this with you, sorry, my brain is not holding onto things these days.
" When the body senses an invasion by foreign organisms, such as HCV, chemical responses are triggered. Among those responses are various kinds of immunoglobulin, proteins that help kill the foreigners or regulate the immune response. For some reason * biologists are not sure why * these immunoglobulins can "glob" together and lodge on the walls of medium and small blood vessels.
The immunoglobulins that are involved are called cryoglobulins because they turn into a gel at cool temperatures (cryo comes from the Greek word for cold). Since cold temperature readily affects the small and middle-sized vessels in the body's extremities, the cryoglobulins are most likely to form in them. It appears that this glob-and-lodge action causes the inflammation of blood vessels. Cryoglobulinemia is the condition of having cryoglobulins in the blood.
Cryoglobulinemia and HCV became linked when researchers found bits of HCV and HCV-specific antibodies trapped in globs of cryoglobulin. They speculated that the cryoglobulinemia was HCV-incited, occurring when cryoglobulins specifically attacked the hepatitis virus. Other organisms can cause cryoglobulinemia * cancerous lymph cells, for instance * but the HCV-related version always involves a particular mixture of two types of immunoglobulins. Hence, the "essential mixed" of EMC.
However, the link between HCV and EMC is not entirely straightforward. The chemical tests used to identify specific immunoglobulins and the blood assays used to spot HCV products are complex. Doctors do not order them routinely. As for neuropathies, unless there is an obvious reason to suppose they result from HCV infection, doctors are likely to assume that another, more common system-disturbing disease is responsible. Diabetes mellitus may cause very similar symptoms, for instance.
Medical journals have described only a few cases of the HCV-EMC-neuropathy connection. Reviews of the published literature found that 36 to 54 percent of HCV-infected subjects also had cryoglobulins. According to one study, 21 percent of those with the cryoglobulins showed symptoms, but the authors did not specifically mention neuropathy.
The article by Petty's research team cited a handful of other reported cases of HCV-associated cerebral ischemia similar to their two but added that no detailed description of the condition is available. All the articles warn that their findings are exploratory, not definitive."
Thanks for the info. I will take your advice , and speak to the doctor, and see if they will run the tests. Its really hard to type when you cannot feel it. I have been noticing lately how bad its gotten. I am always cold too.. especially my hands.. I will google it too , and I wrote down both of those , Cryolglobulins & Neuropathy. I am also diabetic, but its been just fine for months. I am sure she is not going to be happy that I haven't been taken that medicine. but they also told me a year ago, if I dropped some weight , it could very well take care of it. and I think it has. But I have too many other things I have to put into this body these days. Will let you know what they say tomorrow.. Hope you are doing well.
Hi--I've told you before you look great in your pictures! Diabetic neuropathy can cause some of the symptoms you are talking about....numb fingers, goosebumps chills. Sounds like you're doing well mentally though..lknow the end of tx can't come quick enough! Hang in there...
Thanks, I need to post a recent picture one day, when I ever hook up the webcam.. LOL I keep saying I will do it, but its good intention. I will eventually.. Mentally I come and go.. Somedays I feel like I cannot take feeling like this all the time. Hard for me to get things done. When it takes physical energy to do, I start out strong but crash fast. shortness of breath and dizzy. Some days I look fine and feel like ****, other days, everyone knows when I don't feel good. but time is passing quickly.. Hopefully I will know more after my appt today. But I am sure they will have to run tests to find out. Hope you are doing well, and you are feeling better these days.. I will check in after I get home today.
Yes, I'm sure you're length of tx is grinding away at you----you notice how patient I was during tx! I just wanted to add that the Eucerin Aquaphor really helped my fingers and cuticles which were always cracked and bleeding, especially my thumb. For the fingers, it really was concentrated and helped the most. Post when you know something from the dr appt today...
I bet you remember when I was whining in here when I cut my nails short and my fingertips started splitting. It was about 3 months in tx when it started to happen. Also, I didn't have the numbness..just soreness. I used the Avon Moisture Therapy and it helped with the shriveling & keeping them moistureized, but they were still painful & delicate, getting paper cuts all the time etc. at work didn't help matters any. My Gastro said he had never seen that before & he didn't think it had anything to do with tx. *yeah right..tell me another one*
My nurse recommended not using really hot water and to also to buy a dish detergent that was gentle for hands. It seemed to help me & they eventually went back to normal. I'm not sure, but I also think that using our outdoor hottub during the cold winter contributed to them being so delicate.
Wow! I can't believe all that weight you lost. Keep eating girl, so you don't waste away to nothing, okay? The most I lost during tx was about 55 lbs, but everybody is different. I'm really happy with my weight loss (Size 7 now from a 14), just wish I hadn't had to go thru tx to achieve it.
bug, yes its seems like its been forever since I started treatment now. And almost to the end. I am hanging in there. Had a nice long discussion with NP at docs office. I see her at my PCP ofc, just cause she is more attentive, and good at explaining things. I have been going to see her for 7 years now. They gave me some antibiotics, definately have a sinus and ear infection. cheek is puffy on one side. They are sending me for a Lung Scan, she hears fluid on the right side. *same side as infection Also doing bloodwork for the Cryo, and she is running my A1C test for my diabetes, to make sure that is all good. Plus some other b/t for my Thyroid & one for Clorestiral ( sp )
Myown, yes thats what the doctor said too.. So I have to fast and go get lab work done, and schedule the lung scan. I am looking forward to feeling better, but I am not sure I can take anymore bad news.. LOL
Eileen ~ Yes I thought about you of course when the cracking stated. This just really started in the last few wks. I had noticed the numbness, but figured it was just my HGB being so low, and being cold all the time. I never realized it could be a sx of treatment. The NP came in without looking up reading my file.. and says, oh wow, looks who's here. and then looked up with a puzzled expression on her face, and says, hmm looks at the file, looks at me, and said am I in the right room ? Dana ? I said.. I knew you would not recognise me.. She says.. your hair ? noooo... stand up.. turn around, and says OMG.. look at you... I would not have recognised you .
So we will see after going for these tests what can be going on. My vacation is now only 2 wks away.. Still debating if should go out on leave that week before, just to get more time. otherwise after vacation, I only have like 2 more days paid off, to use till end of year. , and of course will have FMLA but thats unpaid. So tell me what you think ? what should I do there ?
My symptoms come and go.. the rash, its bad sometimes, sometimes not. Anemia I have had since week 4. and other than the normal fever after shot and feeling like crapola from that point on for a couple of days, and just no energy.. My hair is coming back, but still falling out too, so all different lengths. I moved back to general population today.. I just hope its not a mistake doing so, especially since I got this infection anyway, and was not around people.. but people did stop in all the time to chat. It was a rough week for me. Being a Union Steward is not always easy. We had 4 people who were being investigated at work, and I happened to be the only one available on Monday, and got called in on everyone of the meetings. They ended up getting fired on Weds, so tis very stressful at work right now. I am debating going out on leave.. we are so short handed, I am scared to go out on leave. but will see what results of all this testing I need to go do.. Hope you are doing well as can be expected.
Myown-I just thought I posted this, but it went to never never land instead of to the Forum I guess. Answering your question, yes you can have neuropathy for many different reasons. Cryo is an obscure route to neuropathy, mostly through people who have hep c.
I felt really anxios post tx, becaue of sides that seemed to keep coming, but am really about 100% returned to "normal" (not that I was normal before) I'm sure you will get back to normal, it may take a little longer, you treated longer. I'm due for my 6 months PCR the second week in Sept. I'm not anxious about it anymore...but may change my mind as the day gets closer.
Dperry--Your NP seems wonderful! What fun to have someone not recognize you because you've lost so much weight:) I've been on both sides of that fence, really stinks when they don't know me cause of a fat face:)
My daughter had a sinus infection, ear infection, and pink eye on her right side and the dr had to give her steroids to get the swelling down. She had the adenovirus, which also gave her a gastrointestinal disorder too. She works with kids, so gets alll kind of infections. Hope it works out with you being outside, but you're going to get exposed no matter where you sit. They'd have to give you a private bathroom and exclude you from meetings to really keep you safe.
Keep us posted.
Yes it was fun to see her expression. I knew that she would not . All the thick blonde long curls are gone, now its short and drab , and thin and grayish. And of course with the weight loss especially.. if I had still had my hair, she may have known it was me, but with such a drastic change, It was funny. Well its friday again, time for shot 35 tonight. Count down on its way. I will go pick up my meds today, and schedule my xray. I will go for my labs in the morning.. Of course won't know anything till next week. But will keep you updated.
Hi Dana. For me, it worked saving the last of my vacation time for my last week of tx. But I had other motives as well. I wanted to use the last of my vaca time before I gave my notice at my old job (which I did the following Monday).
I was glad I had that last week of tx off from work tho. I was very fatigued at that point and the brain fog was keeping me from doing my best at work. I just wanted to seclude myself and rest at the end.
I don't know how to give you advice on your question because only you know how you feel & what you think you can do, but I thought I'd share my own experience to you.
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