HepC stinks. I also have RA and I tried the triple therapy. I could only endure it for 7 weeks. I became so anemic I needed 3 blood transfusions. It is BRUTAL. I have know idea how anyone gets thru it for as long as its prescribed. Gastro Dr. said it was too much for me. I now am loosing my hair 2 months later. I am going to see a Dr. at UCLA and get his opinion on a drug called Cyclosporine. It won't cure either Hepc or RA but there is a chance it can slow both down. Has anyone heard of it?
I hope you can find the answers you need. You are your own advocate.View Thread
Hello! I'm back to report that I started the treatment at the end of March and had to stop it after 7 weeks. I developed severe anemia and the RIBA rash tested my sanity. Three blood transfusions and a spontaneous pneumothorax.
My Dr. said it was all too risky at that point. I've been off the meds for around 2 months and I feel ok except my RA has kicked in! I feel quite helpless now because it seems I can't take any meds for either disease.
Do I just do nothing?View Thread
Hi Haylen! I had written back here in Jan. when I was beginning my journey with trying to get the rx's sorted out. I saw this support group and it just helped knowing it was here and to write my concerns when i needed to.I'm back now because I could not handle the tx. During the 7 wks I was on it, I had such bad anemia that I required 3 blood transfusions and my Dr. Was more concerned at this point about my heart. The RIBA rash was all over my body and I couldn't stop it from driving me over the edge. So stop I did and now I 'm feeling very sad that I couldn't continue and I am now just going to have to live with it and not treat it. I am stage 2 ,genotype 1b. I have RA, also which we are assuming developed because of my Hep. I have ABSOLUTELY no idea how or when I contacted The HepC. I will probably not treat the RA because most tx's effect the liver and my liver is already compromised.I'm 56, have a son 29 and live with my wonderful husband # 2 ,now for 17 yrs. I live about 30 miles north of L.A. I have been looking for a local support group close to my area but there are none close enough. I think I will just go to see a psychologist and talk because I have already met my horrendously expensive deduct able from Blue Cross. I just need to get some things off my chest and I thought some people in this Community could relate to me.
Maybe we will talk again!View Thread
Well, my journey with my 3tx treatment lasted only 7 weeks. I started March 20 and my Dr. and I both made the decision to stop the meds on May 20. After 3 blood transfusions and the rash that was testing my sanity, I had to quit. I became so anemic , I couldn't keep my red blood cell count above 10. Average is 12-14. My went as low as 7.4.
I was prepared for this being a hard treatment. I didn't realize that I needed a lot more help than what I had. I couldn't take care of myself so well and it was hard for me to make decisions. Now that it has been a month since I've been off the meds, I am so depressed. It is a different kind of depression than the drug induced one that I had. I feel sad that I couldn't do it. I am in stage 2, 1b. Also have beginning stages of RA. I guess I just want to hear from the ones that couldn't finish the tx like me, and how or if you also got into the "funk". I know I will live with this and try to lead the "healthy " lifestyle. Not much else I can do.View Thread
Hi. I am in the "process" of applying for the financial help from the few orgs that the manufacturer has me doing. There is so much paperwork and I don't even know if and when it will ever be sorted out. All I know is I am ready to do what I have to do. Trying to keep the stress factor at a low roar. I did get my starter kit! What good it does me. My Dr. Says there is not a matter of urgency here and we'll just wait until the Ins. Co and the Curascript and Vertex and the foundations get it together.
So, in answer to your question. No , I have not started any meds yet and it has been since Nov. since I was first diagnosed with RA. And Dec since I was diagnosed with Hep. I had know idea this was going to be such a long "process" just to get meds! And I had know idea the drugs were going to be beyond expensive.
I have stopped smoking, and it's makin me crazy.View Thread
Thanks, Haylen. I'm trying to keep my patience level in check with the beaurocratic b--, that one has to go thru for financial help. I 'm not feeling to encouraged because I'm not poor, just in the "middle " class. Anyway the Dr has started the process of getting the meds ordered and authorized by my ins. What's really been bothering me lately in my RA. From what I've been researching lately is the meds for my Hep will probably make my RA get worse. I try to keep a stiff upper lip on everything that's been going on with me but my nemesis is my cigarette smoking and I really need help on that one. I think I'm gonna ask one of my Dr. s for that rx they make to help me with that.
I do not need for anyone to tell me how bad it is for me.
I 'm a "work in progress!"View Thread
I'm a first timer!Dr's ordered the meds, now I have to wait for all the authorizations,etc. is it always such a hassle to get these meds?
6 months sounds good. I guess now I'm just feeling like I wan to get this done and get it over with so I can move on with my life.View Thread
Well,results of biopsy are back. Stage 2,grade 2, and my Dr highly suggests I do the 3 drugs. Pegasus,Ribaviron and Telaprevir. I have decided to go ahead with the treatment along with changing to super healthy diet and Tai Chi. ( helps with the RA) I figure I may as well give it a shot , one year of my life is worth the "chance" I may stop the progression of these evil diseases in side my body.Being that I have 1 b, (and my VL is only 265,000 )is also not working in my favor, but I have no cirrhosis yet, so this is good. I'm gonna see if I may try to get the Manufacturers to help pay for these horrendously expensive drugs, along with my med ins. What a mess. I don't want to get to stage 3 and I don't want my RA to get any worse, what have I got to loose?View Thread
I'm going to see my RA Dr. today, for a follow up. I'm thinking this will probably be the last visit for a while , cause I now have a Hep Dr.! The ultra sound looked good, but I'm getting a biopsy of my liver Jan. 10 and then I'll know what stage I'm at with that.I'll be back!View Thread