Aa
Prove 3-week 20 report
I went into my 20 week apt. today with something new.....a massive rash. This new rash began in force approx. 1 week ago. Since about week 8 I have had the typical Riba rash but nothing serious. This new rash covers my entire back, my rear end :-(, the backs of my arms and my chest. I have taken Claritin on a daily basis for years and think that is what kept this at bay until now. It still seems so odd that it developed this far along into treatment. They have give me an Rx for Atarax and a topical steriod. They do not allow oral steroid's in this trial until after week 24 as I found out a couple months ago when I had a serious bout with asthma. I was allowed inhaled steroids only. (Luckily, the inhaled steroids did the trick...although it took a full 2 mos.) So, I just need to hang in there for another 4 weeks.
The other interesting thing is that at week 12 my triglycerides had risen to 587. They gave me a Rx for Lopid. At week 16 my triglycerides had dropped down to 135. On the negative side, my ALT and AST have risen for the first time. At week 12 they were 22/23 and at week 16 they were 67/93. It's possible that it is being caused by the Lopid....at least I hope so.
That's about it. I have been doing much better emotionally recently and the brain fog is minimal.
I still need to take the Zofran routinely for nausea.
I'll be curious to see if my Hgb is still holding. I seem to have adapted and I'm functioning fairly well at 10.
The other interesting thing is that at week 12 my triglycerides had risen to 587. They gave me a Rx for Lopid. At week 16 my triglycerides had dropped down to 135. On the negative side, my ALT and AST have risen for the first time. At week 12 they were 22/23 and at week 16 they were 67/93. It's possible that it is being caused by the Lopid....at least I hope so.
That's about it. I have been doing much better emotionally recently and the brain fog is minimal.
I still need to take the Zofran routinely for nausea.
I'll be curious to see if my Hgb is still holding. I seem to have adapted and I'm functioning fairly well at 10.
I had a lot of support from friends and family when this happened but unfortunately, no one else can take care of much of what is involved when you're dealing with identity theft.
I have become super vigilant! In fact, my new purse has so many zippers they would have to go through to get to my wallet that hopefully they just look at it and move on...
I find the Lidex soothing. The Caladryl burns so I stopped using it. The Gold Bond is great because it's easy to apply on my back which is where the worst of the rash has settled. I just wished it smelled a little nicer...
I have become super vigilant! In fact, my new purse has so many zippers they would have to go through to get to my wallet that hopefully they just look at it and move on...
I find the Lidex soothing. The Caladryl burns so I stopped using it. The Gold Bond is great because it's easy to apply on my back which is where the worst of the rash has settled. I just wished it smelled a little nicer...
I think i am a week behind you dmhrdh . I will try the Lidex techniques and see what happens.
I wonder if this is happening then what else is going on. I can count to 40 so I know how many days I meed to get through. I spiked emotionally last week with 911. I had been so calm (all in all ) prior to that.
First treatment I has the victim of a shrewed thief who stole a large price of my retirement money. This did not sit well with me. I exercised my inalienable right to ask for help and found good friends who fixed the matter up, but it took a long time and wore me down. I just stayed hopeful and became more vigilant. Good luck.
http://www.medhelp.org/forums/show/75
I wonder if this is happening then what else is going on. I can count to 40 so I know how many days I meed to get through. I spiked emotionally last week with 911. I had been so calm (all in all ) prior to that.
First treatment I has the victim of a shrewed thief who stole a large price of my retirement money. This did not sit well with me. I exercised my inalienable right to ask for help and found good friends who fixed the matter up, but it took a long time and wore me down. I just stayed hopeful and became more vigilant. Good luck.
http://www.medhelp.org/forums/show/75
Ummmmm.....I think I was here, so if you asked, my bad for not mentioning this earlier. Anyone suffering the torment of these bloody rashes deserves all the help they can get!
Where were you about 25 tubes of Lidex ago at $23.50 a pop when my my insurance wouldn't cover :-)
Thanks Susan, but honestly, when I look at you and others who have treated so many times, I am amazed at YOUR strength.
By the way, I've always had a reputation for being very stubborn...But, whatever you call it, strength or stubbornness, it comes in handy at times like this, don't ya think?!?!?
By the way, I've always had a reputation for being very stubborn...But, whatever you call it, strength or stubbornness, it comes in handy at times like this, don't ya think?!?!?
Applying the Lidex cream onto dry skin took a lot of cream per application. I started to apply it straight out of the shower while still wet. It spreads really easily, uses less cream, is less greasy, and seemed to work just as well. Your mileage may vary, of course, but it might be worth a try.
I've been following your rash posts but thought I was in the clear, with the exception of the typical Riba rash.....until last week when this "new" rash started to appear. I did see my doctor about it yesterday. I have stopped taking Claritin and have switched to Atarax, 50mg up to 4X per day. I also have started using a steroid cream and some Caladryl lotion.
I've already been told that if we can't get this under control systemic steroids I will be out of the study. They don't allow systemic steroids in the trial until after week 24.
I have been diligent about staying out of the sun. The last thing I want is scarring from a bad Riba rash.
As you know, they can't say what is causing this "new" rash of mine. I was told the VX rash has shown itself in different ways with different people.
I think the oddest thing in my case is that if it is the VX rash...why did it start now????
I have a feeling that I am in arm B...which in my case may be for the best.
I hope you're feeling better.
I would say that my mental state at one point became serious. I became extremely emotional. I mean EXTREMELY. Then my wallet was stolen when I was at the clinic for my 16 week appt. By the time I got home from my appt. and realized my wallet was missing there had been thousands of dollars charged on several of my bank cards. As you can imagine, this not an easy thing anyway. Plus, as an added bonus I had to go to the DMV 2 days in a row....In my emotional state the stress became almost unbearable. A couple weeks after this I lost my power due to storms for 4 days. As strange as I know this is going to sound, this ended up being a good thing. I had no choice but to relax. That was went my attitude improved.
I will be dealing with this whole wallet thing for a long time into the future, but at least now I feel like I can get things taken care of as they present themselves now without crumbling into an emotional mess.
I just wish this black cloud that seems to be hanging over me would move on already!!!!!!!!!!
Don't worry, I will be keeping a close eye on my rash.
Any and all tips are gratefully accepted!
Thanks!
I've already been told that if we can't get this under control systemic steroids I will be out of the study. They don't allow systemic steroids in the trial until after week 24.
I have been diligent about staying out of the sun. The last thing I want is scarring from a bad Riba rash.
As you know, they can't say what is causing this "new" rash of mine. I was told the VX rash has shown itself in different ways with different people.
I think the oddest thing in my case is that if it is the VX rash...why did it start now????
I have a feeling that I am in arm B...which in my case may be for the best.
I hope you're feeling better.
I would say that my mental state at one point became serious. I became extremely emotional. I mean EXTREMELY. Then my wallet was stolen when I was at the clinic for my 16 week appt. By the time I got home from my appt. and realized my wallet was missing there had been thousands of dollars charged on several of my bank cards. As you can imagine, this not an easy thing anyway. Plus, as an added bonus I had to go to the DMV 2 days in a row....In my emotional state the stress became almost unbearable. A couple weeks after this I lost my power due to storms for 4 days. As strange as I know this is going to sound, this ended up being a good thing. I had no choice but to relax. That was went my attitude improved.
I will be dealing with this whole wallet thing for a long time into the future, but at least now I feel like I can get things taken care of as they present themselves now without crumbling into an emotional mess.
I just wish this black cloud that seems to be hanging over me would move on already!!!!!!!!!!
Don't worry, I will be keeping a close eye on my rash.
Any and all tips are gratefully accepted!
Thanks!
It's amazing what you can adapt to, isn't it?
One of the reasons I'm so nervous is that they discontinued my Riba totally for 2 weeks (I dropped from near 16 to 8.something by week 2.) They dose reduced me for 1 week then discontinued the Riba for 2 weeks. Then they gradually increased my Riba again and I've been on full dose since June 21 and I'm holding at 10. So........I really don't know what else they could have done other than transfuse since Procrit wasn't an option.
I have a strong feeling that I am in arm B which is 24 weeks triple therapy and 24 weeks combo. In my case, with the Riba reductions, I think that would probably be my best chance of clearing also...as much as I don't look forward to it....
Yes, SVR sounds good.
I keep telling myself that I'm 51 years old and Stage 2. If I can get rid of this it won't be long before I'll probably feel better than I did before I even knew I was sick. I can't wait!! But I know it won't happen if I don't get rid of this. I plan to hang in until the bitter..and hopefully sweet...end :-)
One of the reasons I'm so nervous is that they discontinued my Riba totally for 2 weeks (I dropped from near 16 to 8.something by week 2.) They dose reduced me for 1 week then discontinued the Riba for 2 weeks. Then they gradually increased my Riba again and I've been on full dose since June 21 and I'm holding at 10. So........I really don't know what else they could have done other than transfuse since Procrit wasn't an option.
I have a strong feeling that I am in arm B which is 24 weeks triple therapy and 24 weeks combo. In my case, with the Riba reductions, I think that would probably be my best chance of clearing also...as much as I don't look forward to it....
Yes, SVR sounds good.
I keep telling myself that I'm 51 years old and Stage 2. If I can get rid of this it won't be long before I'll probably feel better than I did before I even knew I was sick. I can't wait!! But I know it won't happen if I don't get rid of this. I plan to hang in until the bitter..and hopefully sweet...end :-)
I don't know if you guys have been reading my rash posts but around week 7 or 8 I broke out with a rash first on my forearms that looks liked a bad case of poison oak.
Then my entire back broke out in like a solid rash. Next my legs and buttocks broke out in a rash that started out looking like the solid rash on my back but morphed into something that was more splotchy....like 1-2 inch splotches of rash with high bumps that itched like hell.
My doc said mine looked exactly like the VX-950 rash (he can't/won't say for sure). From what you describe I would give it a 99% chance that the VX rash is what you have.
IT IS TO BE TAKEN SERIOUSLY IMMEDIATELY; DO NOT SCREW AROUND WITH THIS THING BECAUSE PEOPLE HERE HAVE BEEN TAKEN PACKED IN ICE BAGS AND EVENTUALLY TAKEN OFF THE STUDY!!!!
My doc is awesome and he immediately prescribed Lidex cream (although they kept giving me a 30ml supply for 10 days which when I first got the rash would last maybe two days). He also prescribed anti-histomines for the itching; Atarax 1-3 times daily and Doxepin for at night because it makes you sleepy.
Somebody here also suggested balnetar bath oil which is tar-based and makes your tub brown.
Go buy a big bottle of T-Gel 4% shampoo and use in the shower as bath soap for your body. Very similar without the mess.
Also, what really sucks is STAY OUT OF THE SUN AND HEAT, PERIOD!
I too am in Prove 3 week 20. After 3-4 weeks I have this rash under control. Per protocol they issued new meds at week 12 and to be honest I think that I'm in Group D now on placebo because the rash is gone. You may be in Group B which is 48 weeks of VX950+INF+RBV? We'll know in 4 weeks.
Now that my rask is under control I went to Gander Mountain and bought light-weight UV long-sleeve shirt and long pants and a big old floppy hat so I can now be out some. My kids think it makes me look Amish; I'm going more for an Australian look :-)
Heed my words, DO NOT SCREW AROUND WITH THIS RASH AND GO SEE YOUR DOCTOR NOW! If it gets too bad the next step was Systemic Seroids which cures the rash but weakens the immune system (exaxtly what you don't want).
If I can be of further help please post.
Mike
Then my entire back broke out in like a solid rash. Next my legs and buttocks broke out in a rash that started out looking like the solid rash on my back but morphed into something that was more splotchy....like 1-2 inch splotches of rash with high bumps that itched like hell.
My doc said mine looked exactly like the VX-950 rash (he can't/won't say for sure). From what you describe I would give it a 99% chance that the VX rash is what you have.
IT IS TO BE TAKEN SERIOUSLY IMMEDIATELY; DO NOT SCREW AROUND WITH THIS THING BECAUSE PEOPLE HERE HAVE BEEN TAKEN PACKED IN ICE BAGS AND EVENTUALLY TAKEN OFF THE STUDY!!!!
My doc is awesome and he immediately prescribed Lidex cream (although they kept giving me a 30ml supply for 10 days which when I first got the rash would last maybe two days). He also prescribed anti-histomines for the itching; Atarax 1-3 times daily and Doxepin for at night because it makes you sleepy.
Somebody here also suggested balnetar bath oil which is tar-based and makes your tub brown.
Go buy a big bottle of T-Gel 4% shampoo and use in the shower as bath soap for your body. Very similar without the mess.
Also, what really sucks is STAY OUT OF THE SUN AND HEAT, PERIOD!
I too am in Prove 3 week 20. After 3-4 weeks I have this rash under control. Per protocol they issued new meds at week 12 and to be honest I think that I'm in Group D now on placebo because the rash is gone. You may be in Group B which is 48 weeks of VX950+INF+RBV? We'll know in 4 weeks.
Now that my rask is under control I went to Gander Mountain and bought light-weight UV long-sleeve shirt and long pants and a big old floppy hat so I can now be out some. My kids think it makes me look Amish; I'm going more for an Australian look :-)
Heed my words, DO NOT SCREW AROUND WITH THIS RASH AND GO SEE YOUR DOCTOR NOW! If it gets too bad the next step was Systemic Seroids which cures the rash but weakens the immune system (exaxtly what you don't want).
If I can be of further help please post.
Mike
Nasty news about the rash, but it sounds like you got on top of it quickly. Hope it resolves soon! I think mine was the standard Riba rash, but it cleared quickly with Lidex topical steriod cream twice a day. Nice adn greasy, but better than the skin-tearing itch.
I'm with you on the "HGB 10 feels OK" point. Mine dropped from 15.9 fairly quickly, then bounced along the bottom between 9.8 and 10.2 right through the 12 weeks + 12 weeks of Prove 1. Had a couple of accasions where the clinic pulled me in for a second CBC and the threat of Riba reduction, but it always managed to drag itself back up to the magic 10.0 on the second panel. Better news is that all the lab panels popped right back to normal within a month of completing dosing.
There is good news on the other side of all this, so hang tough. SVR has a nice ring to it!
I'm with you on the "HGB 10 feels OK" point. Mine dropped from 15.9 fairly quickly, then bounced along the bottom between 9.8 and 10.2 right through the 12 weeks + 12 weeks of Prove 1. Had a couple of accasions where the clinic pulled me in for a second CBC and the threat of Riba reduction, but it always managed to drag itself back up to the magic 10.0 on the second panel. Better news is that all the lab panels popped right back to normal within a month of completing dosing.
There is good news on the other side of all this, so hang tough. SVR has a nice ring to it!
I have no idea what this rash is and of course there's no way to know for sure what is causing it.
When I quit smoking year ago I tried the patch and ended up having an allergic reaction to it and ended up with a very similar rash.
Did they give you anything for your rash?
I'm not postive about this but I think we Prove 3ers are the first to have a 24 week VX arm.
When I quit smoking year ago I tried the patch and ended up having an allergic reaction to it and ended up with a very similar rash.
Did they give you anything for your rash?
I'm not postive about this but I think we Prove 3ers are the first to have a 24 week VX arm.
I am hanging in there..even if it's by my fingernails.
I also started out with a fairly high Hgb...I think it was 15.8.
I am also getting nervous about the 24 week results. And I have good reason to worry. I was either off the Riba or at a lower dose for several weeks starting at week 2. Of course, at that time, we all had hopes that the Riba wouldn't be necessary. Now we know better. I just hope that if I had any breakthrough that it was cleaned up in the following weeks.
Best of luck to you and I'll be watching for your news.
I also started out with a fairly high Hgb...I think it was 15.8.
I am also getting nervous about the 24 week results. And I have good reason to worry. I was either off the Riba or at a lower dose for several weeks starting at week 2. Of course, at that time, we all had hopes that the Riba wouldn't be necessary. Now we know better. I just hope that if I had any breakthrough that it was cleaned up in the following weeks.
Best of luck to you and I'll be watching for your news.
Oh yeah, this has been barrels of fun alright!!!!!
As far as the hemo goes....I think the fact that I dropped into the 8's at one point that 10 feels like 15!
I had the most difficulty with my Hgb when I dropped fast. Both times I have treated my Hgb dropped in half by the 2nd week. I've been back up to the full dose Riba since somewhere around week 8 I think and my Hgb has managed to hold at the 10 mark since then.
When I treated the last time my doc started me on Procrit when I dropped to 10. I did 2 shots of 40 that first week and continued to drop into the 8's until it rose again around the 3rd week on the Procrit.
Good luck! I have no doubt you will pull through but if I were in your shoes I would fight for the Procrit.
As far as the hemo goes....I think the fact that I dropped into the 8's at one point that 10 feels like 15!
I had the most difficulty with my Hgb when I dropped fast. Both times I have treated my Hgb dropped in half by the 2nd week. I've been back up to the full dose Riba since somewhere around week 8 I think and my Hgb has managed to hold at the 10 mark since then.
When I treated the last time my doc started me on Procrit when I dropped to 10. I did 2 shots of 40 that first week and continued to drop into the 8's until it rose again around the 3rd week on the Procrit.
Good luck! I have no doubt you will pull through but if I were in your shoes I would fight for the Procrit.
I think we are the leading edge 24 week Vxers. the interesting thing for me is that I always had a riba rash in the past. This time - no rash at all. Plenty of other sides, but no rash.
dmhrdh; I hope you are hanging in there. My Hgb just went down to 9.5 and I could barely get out of bed; it was 16.2 when I started. They reduced the dose to 800 mg and I feel better now. I am at the end of week 22 now. I am getting nervous about getting the test results in 4 more weeks.
dmhrdh; I hope you are hanging in there. My Hgb just went down to 9.5 and I could barely get out of bed; it was 16.2 when I started. They reduced the dose to 800 mg and I feel better now. I am at the end of week 22 now. I am getting nervous about getting the test results in 4 more weeks.
beginning week 19 and a similar effect is occurring with me. Especially the back and butt. My alt and At also just rose. But I am on a boatload of pills.
Have they had 24 week Vxers before?
Have they had 24 week Vxers before?
looks like your having barrels of fun. all that crazy stuff and no hemoglobin to live through it with! your message has helped me in that youve adapted to hemo 10
fairly well. bravo! im facing the same challenge with hemo 10 levels and no rescue drugs yet. hopefully i can pull through. keep on truckin.
fairly well. bravo! im facing the same challenge with hemo 10 levels and no rescue drugs yet. hopefully i can pull through. keep on truckin.
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