Hi everyone, I go for my 4 weeks labs tomorrow. Shouldn't I be scheduled for a viral load test tomorrow? The phlebotomist said none was ordered. Do u think this is an over site on the nurse who pput labs in to be ordered or a insurance issue?? Just wanting to know if my high viral load is decreasing. Also, the nasty side affects seem to be resolving this last week. Less severe headaches, muscle spasms....fatigue is still an issue, but doable..one possible side that has started recently is the inability to cope with heat, bright sunlight. Do you think this is related to solvaldi/ RIBA use? Or something else. Thanks in advance. Hoping SVR. To all out there
Specifically mention in the warnings for Olysio is sun sensitivity copied here and the link
Photosensitivity: Photosensitivity reactions have been observed with OLYSIOTM in combination with P/R, including serious reactions which resulted in hospitalization. Photosensitivity reactions occurred most frequently in the first 4 weeks of treatment with OLYSIOTM in combination with P/R, but can occur at any time during treatment. Photosensitivity may present as an exaggerated sunburn reaction, usually affecting areas exposed to light (typically the face, "V" area of the neck, extensor surfaces of the forearms, and dorsa of the hands). Manifestations may include burning, erythema, exudation, blistering, and edema.
Use sun protective measures and limit sun exposure during treatment with OLYSIOTM in combination with P/R. Avoid use of tanning devices during treatment with OLYSIOTM in combination with P/R. Discontinuation of OLYSIOTM should be considered if a photosensitivity reaction occurs and patients should be monitored until the reaction has resolved. If a decision is made to continue OLYSIOTM in the setting of a photosensitivity reaction, expert consultation is advised.
Use sun protective clothing, limit sun exposure and use sun screen.
On sovaldi/riba....24 weeks...have blood test every week to watch my platelets...if they go too low you can get nauseous/dizzy/off balance...which I did...doc adjusted the riba which is the culprit,...all the sovaldi does is cut lose the HCV cells from HCV stem clusters to free floaters so that they become free floating cells...then the riba is added in and it kills those free floating bad HCV cells...but the riba is just a killer drug so it doesn't really know a bad cell from a good cell so it just kills cells so sometimes the drug has to be slowed down by adjusting the dosage.
Dependent on what stage your liver is in fatigue is normal. I am stage 4 pre-transplant decompensated.... Monitor your activity....remember everything that enters your body has to be processed through your liver so the worse your liver is the more fatigue you will feel. I can go about 6 hours up and then take an hour or so nap due to fatigue...sometimes I just don't have a choice...I'll just be sitting there and next thing I know I am waking up.....I've set all sorts of alarms around the house so I will wake up.
Fatigue is a symptom not only of HCV but of HE, or Liver disease too. It's just part of the game right now. I have energy days and low days. I use to be someone who worked 10 hours a day and did 20 other things all in the same day. Now sometimes even going to the grocery store is a challenge.
Also photosensitivity is a problem....mine started with interferon / riba and have remained. My skin is more sensitive to sun and sometimes even in a completely dark room it is like daylight. I use SPF 75 Banana Boat...hats, long sleeve shirts...and good sunglasses. Other reactions have gone away for me but the fatigue and the photosensitivity have been constants.
Hey Lynn thanks for taking the time to share your knowledge. I'm curious, since I'm being treated with solvaldi / RIBA, is oylsio another name for either solvaldi or ribasphere? If not, would ether of those also cause problems with sunlight.? Thanks in advance
Thanks for answering. I only had a viral load blood test prior to treatment. From watching post, was thinking I was up for a VL test today. They didn't order it an according to doctors nurse, was planning on VL test at EOT. I complained alittle an he finally ordered on for today so in a few days, I'll find out if it decreased any. What a waiting game !!!
I'm excited for you to have made it on the transplant list. I'm new to forum an I'm what you would call uneducated in hep C. Issues, but I'm catching up fast. I have been researching everything concerning diagnosis, treatment, stages of fibrosis, ect. From what I gather, it's not easy to make it to the transplant list. Is that true? Anyway, my doctor didn't do any test to determine if I have fibrosis or beginning cirrhosis prior to treatment. I'm assuming he being able to tell condition of my liver through labs.. I'm praying for all an especially you that you will become healthy again an not have this horrible disease doing harm. Take care. Mary
Also to be listed for a transplant I have heard depends on the transplant center for example here in the Seattle area a MELD score of 15 or higher is required. Basically decompensated cirrhosis. In order to be listed your risk of dying with out a transplant must be greater than the risk of dying from the transplant
Sure did clear a lot of confusion on my part, was always wondering why people were on ribavirin an my Rx. Says ribasphere. I thought it was a silly question to ask an was gonna get around to looking it up (the difference ) an personally, I figured that ribasphere was the GENERIC considering my health plan an previous denials regarding a common med that was slightly more ( 12$ ) I truly like to have hit the floor when I got the call about authorization of solvaldi. ..... So far as transplant protocol, that has absolutely got to be one of the hardest things to go through emotionally, I mean, hoping that you are close to death to be able to get on a list, an if you improve somewhat, your taken off the much needed t.p. list? My heart goes out to anyone dealing with this now. Mary
I am GT2 and had my VL checked 2 weeks detected <12, 4 weeks undetected and EOT undetected.
From what I have read almost everyone taking Sovaldi will be undetected by week 4 like 99% to 100% and the same for EOT. except for certain special situations. If I remembered it correctly. All my comments are non medical personal opinions unless also in agreement with those offered by credible medical sources.
Usually the first indication that the meds are working is that if AST ALT are elevated prior to treatment all most all will drop to normal by the first or second week absent other conditions that might have an effect. Protocol recommends VL at least at week 4, (sometimes week 2), EOT and 12 wks post tx for SVR? The CBC etc blood tests are the most important during treatment and contacting or even 9-1-1 as instructed by your doctor if serious side effects occur.
Just guessing, maybe your provider didn't think it was necessary or forgot but added it after you complained? Test does cost a few hundred dollars.
Almost 100% will be underacted at E.O.T. like I was a few weeks ago. It's almost guaranteed. I really think the most important reason for E.O.T to to document that you were compliant in taking your treatment meds.
It sure is nice to hear undetected during or at E.O.T as expected. But the only important one that we all hope for is 12 weeks after tx "You have achieved SVR, HCV virus is still undetected" I also await and expect that answer.
Best wishes for you and everyone treating is to finish and achieve SVR. with as minimal side effects as possible.
For anyone who has time and the desire. You can read my details and logs about my HCV, pre tx, treatment, post tx in my journals at my profile page.
Usually updated every week or two until at least my expected SVR results date near the end of September.
Just a heads up to you and others doing Sov/Rib combo, or any Riba trio. For some including myself, Platelets went up during treatment, and at EOT post bloodwork, came crashing down. Seems that Riba raises them while treating and at the end they actually go back to normal.
Started treatment with Platelets at 125, 4weeks later 175, 8 weeks later 225,
EOT 275, EOT4. 118. I panicked. Thought it meant my liver was steadily improving, and when it fell so low, thought my cirrhosis was worse. Not so....They just go back to where they were before treating. Asked my Pysician assistant, and she had no idea. I only learned from this site, that its a natural occurrence.. Want to save everyone needless worry if it happens to them.
Thank God, for the great people on this site
pre treatment Platelets 89, hgb 16.7 2 weeks 115 -15.4, 4 weeks 127 -14.3 , 6 weeks 123 12.0, 8 weeks 111 -12.2 , EOT 129 -11.8 wondering what my EOT6 will be? Doc will just do EOT6 CBC +VL and EOT12 same. if your reach SVR unless other problems after a few months platelets should start going up very slowly over a long period of time.
The earliest platelet count I have in my downloaded history from the VA is 1996 149, 1999 140, 2000 130"s slowly headed down dropping in 2006 to 117, breaking below 110 2008 between 107 7 120 til dropping below 100 2012 then staying in the 90's and near 90+/- till treatment start
So it took 16-18 years to drop from near 150 to around 90. hope i can get back up to 150+ quicker than 14 years
I would predict your EOT6 to be in the 90 range, but continue to rise over time. With luck, the possibility of normal platelet #s will take up to 5 years, if minimul scarring exists. The 1st order of consideration will be the EOT12.
With current trending, not sure the hoped for outcome. Did end up EOT12
UND, but even that is a little unsettling.
Not sure if you were aware of the platelet scenario, but know you pass on to others checks and balances, so wanted to run that by you and everyone, as we move thru this new terrain.
Quick update I just got my EOT6 platelets 74
Pre tx 88 4 weeks 127, 8 weeks 111,m 12 weeks 129 and now 74?? lowest ever pre tx was 87.
hgb back to 15.1 RBC normal was below during tx at at end
WBC is 3.7 L and wasn't low pre tx or during tx.
NEUTROPHILS is 1.8 low was 2.3 pre tx dropped once to 1.9 but usually was 2.7 to 3.6 during tx
ALT 25 ALT 26
ALK 45 low usually has been between 50 and 62
Should know my EOT6 week VL later next week.
Other than tired sometimes. I have been very busy the past month camping, hiking, walking and working except for one week after cataract surgery July 8.
Although there are a number of reasons for platelet variation before, during and after treatment (including liver status considerations), I have always viewed alot (but not all) of the CBC blood level changes (including platelet changes) as being secondary to rbc lysis (i.e., the hemolytic anemia/rbc destruction associated with meds-ribabirin) and was told that I was correct in my assumption.
Reactive thrombocytosis (e.g., an increase in platelets) causes include (http://www.mayoclinic.org/diseases-conditions/thrombocytosis/basics/causes/con-20032674):
Acute bleeding and blood loss
Chronic kidney failure or another kidney disorder
Iron deficiency anemia
Removal of your spleen
Hemolytic anemia — a type of anemia in which your body destroys red blood cells faster than it produces them, often due to certain blood diseases or autoimmune disorders
Inflammation, such as from rheumatoid arthritis, celiac disease, connective tissue disorders or inflammatory bowel disease
Medications that can cause reactive thrombocytosis include:
Your bone marrow, in response to rbc destruction (which is also a reason for the jaundice (unconjugated bilirubin - note that direct bili remains low and total bili increases with hemolysis) compensates for the loss by increasing platelets (because your body is trying to protect you from further loss of rbcs by increasing your ability to clot - simply stated - its doing what it is supposed to)
I too am on sov/riba and had my 2 week blood work which was comprehensive metabolic panel and cbc with diff and platelets 4500. My AST/SLT were 16 & 7, in normal levels compared to 51& 26 pre tx. Good sign. My HGB dropped from 14.6 pre tx to 12.1, still normal yet due to a thread I read about low hemoglobin (hgb) levels which are possible signs of anemia, I did start taking Barleans high potency fish oil daily 2 days before this blood test. Will better be able to see effects of this addition on next blood work results which will be Aug 16. This next blood work test will include both metabolic panel and viral load. Feel fortunate that I have a proactive Dr watching my back.
Thanks for taking the time to comment. I'm curious, is barleans fish oil the brand name or is it different than regular fish oil gel caps u would find at a drug store. I had quit taking vitamins an minerals before treatment due to the amount of pills I would be taking in a day. I was thinking the less pills that had to be metabolized in the liver, the better. Would fish oil be beneficial during treatment?? Thanks in advance. Mary
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