Hep C Discussion Forum

garfield · Veteran Member

RE: Need your advices !

ios9 · Senior Member

Hi Garfield,

Yes I went to the hospital last Tuesday, but will have my results only next week.

Also, I asked why my platelets have been getting down for 2/3 months, doc said that's because my lever is illllll (she said it twice, in case I would not have understood) my spleen is getting larger and takes more platelets... however the ultrasounds I had the other day says my lever and spleen are of normal size, also why the spleen would suddently become larger while the virus has been away for at least 18 weeks ? I have less and less trust in docs, unhappily.

They asked me to signe an addendum to the agreement from AbbVie I had signed in April. This addendum says they have made some change in the terms of the first agreement, that is that " I agree to allow AbbVie to add Interferon for 48 weeks any time during the treatment if necessary" ! .. but they asked me to signe this while the treatment has been over for 3 months ! I refused to signe and kept one of the paper with me as proof AbbVie is not really serious with patients. This addendum was published in English in 2012 and in French in April 2013 (it says so in small letters at the bottom of the front page) so they should have add it in the first agreement we have signe in April, don't you think ?

I'm not really myself at the moment, may be if I was better I would not have felt outraged, no one know..

Please let us know as soon as you have your results smile

-- Edited by ios9 on Friday 27th of September 2013 11:48:09 AM

ios9 · Senior Member

better news !

Loopy Lisa · Guru

RE: Need your advices !

ucbgal · Senior Member

do,

take a deep breathe we're all going through these horrid sx. the past month i had some weird bruising and dark urine. w/in 1 wk. my urine is clear & have stopped bruising. all i did was add cranberry juice and 4 servings of asparagus along w/ that cherry juice. try it and i know it'll work!

also 2 days ago i stopped the naproxen and switched to mobic. wishing you well.

sandy,ucbgal

Zlikster · Guru

Hey Do,

they will print you new results, dont worry :) You will get thru this! I hope you get thru Benzo withdrawal safely.

best

Jumpy · Member

Hi Do, I am so sorry, that was a very bad gaffe on my part, not what you need when you are feeling so bad. My apologies. I hope that things get a little better for you soon.

mallani · Guru

Hi Do,

Sorry, I didn't know you were going through Benzo withdrawal. I had similar problems when I finally decided to give up alcohol and valium in 1995. It took about 6 months to clear them completely. Have a look at this link- it seems many of your symptoms may be related to this. You have my heartfelt sympathy.

http://www.bcnc.org.uk/symptoms.html

tonib · Senior Member

I am sorry you feel so bad.....try to take 1 day at a time, and deal with things as they come along...I know that is so hard to do and easy to say, and really I should practice what I preach....

My prayers and good thoughts are with you, I hope you feel better soon..

Cinnamon Girl · Guru

Hi again Do, no wonder you`re feeling so low and tearful, the withdrawal symptoms do seem to be a large part of what`s making you so depressed. I really sympathise, I`ve been having a lot of difficulty coming off anti-depressants over recent months myself. Doctors don`t always warn people about this either. The Benzo withdrawal are bound to be making everything seem so much worse, and on top of that you`ve had the distress of grieving for your sweet little feline friend. It wasn`t your fault he died though, please don`t think that. Sometimes our beloved pets become ill and it`s always so hard to bear, but you weren`t to blame and you don`t need to feel guilty.

I know you must be thinking about your 12 week vl test coming up soon as well, waiting for results is always a stressful time for everyone, and we all understand what that`s like.

I`m so glad you`ve told us what`s going on, now we have a much better idea of why you are feeling so down, and I hope that by sharing this with us you`ll begin to see things more clearly too.

Take good care of yourself, you`re not alone, you can talk with us anytime.

ios9 · Senior Member

Hi dear all,

Thank you so much for your kind words, I needed it, thank you. Yesterday nigh I was feeling so down that I forgot the results of my blood tests (paper) in a big store, and they did not found it back, I have just too much on my shoulders righ now, and so very, very little strengh.

In fact, I am having a difficult time because of two medical reasons : HVC and also I am on a benzodiazepine withdrawal wich is pretty hard. In fact, as Roch will not produce Rohypnol after 30th September, I should have started the withdrawal last April, but as the Trial started on the 8th April, my hepato asked me not to and to wait till EOT 4 weeks (end of July). By now, I have been reducing the benzo since 24th July, and things are getting pretty bad, really.

The Petechiaes (less than 1 mm) have started about 10 days after EOT, so I know this is not because of the withdrawal, the blue/violet bruises started later, may be soon after the withdrawal, but I am not sure as I am loosing my memory from lack of sleep. Also, the dry symptome is worth than ever by now. Eyes, ears, nose, mouth, throat, every thing burns. To be honnest, the treatment was quite easy, but the after treatment together with the withdrawal is really diffilcult.

I went on Google this afternoon to see what are the side effects one can experiment when reducing the Benzo.

It says : weack muscles (mine are like marshmallows), sweats (I really do suffer from that too) nighmars (I am even more drepressed after 3/4 hours of sleep than when I fall asleep, insomnia, headack, nausea, depression, and more but those are the "only" ones I have right now.

It's very difficult to know what problems are because of HVC and what is because of the withdrawal.

Yesterday night, a friend who was on Gilead Trial told me she also had lost much platelettes after EOT and her doc said it often happens after EOT with new DDA, but here, docs only moove if the platelets drop to 50 000. The "normal" level is 150 000 and more.

The hospital asked for a check up next Monday to see if there is no liver tumor (ultrasounds) and I have my appointment at hospital for EOT 12 next Tuesday. Problem is that here, hepato docts seem lost with new treatments side effects. They choose the "wait and see".

Jumpy : my baby Peterbald died from FIP on the 21st September 2012, one year to day. I feel so guilty to not have been able to save him, he is in my mind all the time. He was only 14 months old and so soft and tender. It's the stress from his death which, some how, saved my own life, as the virus took over and wined. I was like dying, they made blood tests and found out I had HVC and cirrhosis. I was dropped on AbbVie trial in a hurry soon after that.

Thank you every one, you'r great :)

Do

-- Edited by ios9 on Saturday 21st of September 2013 08:11:03 PM

-- Edited by ios9 on Saturday 21st of September 2013 08:11:31 PM

-- Edited by ios9 on Saturday 21st of September 2013 08:23:58 PM

-- Edited by ios9 on Saturday 21st of September 2013 08:25:54 PM

Loopy Lisa · Guru

I can't offer any advice, but I can offer a nice large cyber hug. You're entitled to feel down, you have gone through treatment. x

mallani · Guru

Hi Do,

Your platelet levels are fine. Don't worry about them. Are you sure you have petechiae, not a rash? Petechiae are less than 3 mms in size, and purpura are larger, measuring from 3-8 mms. Lesions larger than that are called ecchymoses. The most common cause for petechiae is non-specific vasculitis. Any of the Turquoise drugs may be the culprit, and it will almost certainly settle down by itself. Finishing Rx is hard, particularly if you're worried about only doing 12 weeks instead of the 24 weeks you wanted. It's only natural to be anxious with the 12 week VL coming up. I'm sure you will be fine. Keep up the fluids and the urine colour will sort itself out. Relax girl, you're almost home! Cheers.

Jumpy · Member

Hi Do, I'm so sorry you feel sad, I have my fingers crossed for your test next week. Perhaps your little Peterbald can make you a nice cup of tea... smile

PS And a cyber hug from me too.

-- Edited by Jumpy on Saturday 21st of September 2013 10:08:43 AM

Tig · Admin

Hi Do, I'm sorry you're having such a difficult time of it right now. Have you talked with your doctor or nurse about your concerns? I think that would be a great first thing to do. If your method of measuring Platelets is the same as we have here in the states, then your levels are well within normal limits. I know that petechia can be caused by low platelet counts but it doesn't look like your levels are responsible for something like that. Just so you have something to refer to, here in the States normal platelet levels are referenced at 140 - 400 Thousand/uL. Even yours when it tested as 137 is still quite acceptable and nothing to be worried about. The one thing with platelet counts is that during treatment with Peg and Ribavirin with either of the two PI's (Incivek and especially Victrelis) will cause those levels to change, significantly sometimes. It's not unusual at all to see them bounce up and down throughout treatment and since you're only three months post treatment, I believe you've got many months to wait before your system is clear of them and their effects on you. Bruising, petechia and energy levels have all been part of my experiences before and now during treatment. My doc says to expect it. Please try to touch base with your doctor and describe your concerns, that's what they're there for. You've come so far and you've done so well, are you perhaps letting your nerves get to you? That is certainly understandable! We all experience varying degrees of nervousness during treatment and you're doing the right thing by finding out what's going on. Just try to concentrate on the positvie, you've had such good luck, try to keep your sights set firmly on you goal and that's SVR. In the meantime, contact your doctor and don't jump to any conclusions. Wait for your tests on Tuesday and plan on them being what you want them to be. Continue to drink plenty of water, if you're not hydrating enough that will cause varying degrees in your urine color. If you don't drink enough your urine will increase in it's specific gravity and with an increase in that you'll also see a darker yellow color exhibited. If the depression and crying get to be too much, please call someone right away and let them know you need to talk. You're not alone Do, we're here for you anytime!

ios9 · Senior Member

Hi all,

I am 3 months EOT now, will have a blood test next Tuesday to know if I am still UND 12 weeks EOT.

However, things are not for the best :

I ended the Turquoise Trial (30 June 2013) with a nice 210 plaquettes (I had only 131 when I started the treatment). Then about 10 days after EOT, I started to have petechiaes (tiny red spots on the skin), then later on I had new "bruises" every morning together with petechiaes.

20th of August, my plaquettes had dropted to 149.

To day my plaquettes are down to 137 which is close to the number I had before the Trial, however, no more bruises, only some petechiaes.

Together with that, I had my energy going up in July, then slowly getting down in August, and even less energy right now, together with sweats.

My water was yellow before and during the Trial, became nice light yellow all July till 3rd week of August, then since 6 weeks, are same deep yellow (not orange) like before the treatment.

I saw my acupuncturist yesterday night (I did not know plaquettes had even drop more) told him my worries with plaquettes, petechiaes, sweats, my kidney who seems to get tired, my skin which is very fine and dry, my weack muscles, etc. he made a jock, saying I am some one special ... disbelief

I feel alone, depressed and can't help crying.

As I know nobody here will make a jock of my suffering, you are the ones I am turning myself to.

Do

Cinnamon Girl · Guru

Hi Do, of course no-one here would make a joke of what you`re going through, we are all here to give you support, and it was very insensitive of your acupuncturist to make that remark.

I`m so sorry you`re not feeling too good since you finished the trial, and I agree with Brady that you really should get some medical advice before jumping to any conclusions about what`s going on. Three months post treatment really isn`t that long, even though it probably seems like ages to you, and your system is quite likely still settling down.

I know it`s easy for me to say it, but try to take it easy and please don`t cry, it will be alright.

Sending hugs, Jill xx

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