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3297715 tn?1349020348

Side Effects only getting worse

Hello all,
       I know I haven't been on here in a while but the side effects have only gotten worse.
I have lost 20 pounds, I have a rash on my back and arm, can't concentrate or focus. The depression was so bad last month I was seriously considering shooting myself.
Anti depressants have been upped to 80 mgs a day. Now my platelets have dropped down to 22,000 so they are going to try to put me on Promacta to bring them back up. Blood pressure is low but nothing serious. Still no appetite, hair falling out , I sweat all the time and I'm just absolutely miserable. This is week 9 of treatment...does it get any better ?
11 Responses
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1840891 tn?1431547793
I've missed you! A lot of us have some arthritis, but then it's pretty common in any group of people with an average age of above 45. I hope you are seeing a decent rheumatologist for it. Have they given you a label for it yet, as in type of arthritis? I have had an autoimmune arthritis for more than 25 years now, most probably caused by my HCV, but in the last five years I've also developed osteoarthritis in some joints, particularly my hands.

I don't remember what stage your liver was at. This is what would concern me most about your taking meloxicam. It is definitely one on the NSAIDs and is, or should be, off-limits if you have cirrhosis. If your liver damage never progressed that far it may be fine to take it, but you should definitely check with your hepatologist about it before taking it for long. I am cirrhotic and can't take any NSAIDs at all. I take other meds that help with the autoimmune arthritis, but for the osteoarthritis all I can do is physical modalities (heat, ice, physical therapy) and use topical NSAIDs (I recommend Voltaren gel). I also had joint surgery on both thumbs and it helped a LOT, but that's only for pretty extreme cases. I hope you can find your own best solution. Good luck!
Helpful - 0
3297715 tn?1349020348
Hello everyone I am back and feeling a lot better. I finished eot in August but now I am having severe arthitis pain in my knees. My family dr has me on Meloxicam 15 mg. I have arthritis in my hands and neck but I can't help but wonder if this could be from the Hep C as it has never bothered me prior to tx.

I still have to an ultrasound in a few weeks to find out it the virus is cleared but I am doing much better since my last post.
Thank you to everyone who was there for me during my time of need. You helped me so much I couldn't imagine what I would have done without you.

Helpful - 0
317787 tn?1473358451
Hi everyone above has given great advice.
I wanted to say You are not alone.
I am so very sorry for what you are going through, I felt that the tx was very isolating as no one outside of the tx can understand what you are going through.
Many have gone through what you are going through.
Someone does need to see the rash to make sure you do not have a severe rash.
Hair loss is normal.  I lost 80% of my hair, it was awful but a year later it is coming back and so is my liver.
Saying all that I am surprised they have not done anything for your low platelets.
I know it is hard to do anything when you feel as low as you do.  Is there anyway you could get in to see the doctor and tell him everything you are experiencing?
Drinking milk, mixed with ice cream, if you can get it down, or even some ensure would be good.  Taking all these meds with nothing in your stomach is not good
My best to you
Dee
Helpful - 0
Avatar universal
I'm sorry to hear that you are experiencing so many side effects. While I am not as far along in treatment as you I would say that all these responses are from folks with some great advice and a lot of experience with sx. In fact, what I have learned from this forum has probably contributed to my keeping many of the worst sx. at bay. Especially the water intake, nutrition, and what ever exercise you can do. I keep learning from these posts and keep preparing for what may be a change in sx as time goes on. Being in week 9 is getting you closer and closer to EOT.

Your biggest concern right now is your mental state. I know that when I started treatment, everyone involved from my GP, treatment team, all the way to the pharmacist made it very clear to me that I needed to get in contact with  them immediately if I had any indication of severe depression, suicidal thought, or thoughts of hurting myself or others. Please take the above advise and make that call to you Dr. You are doing this to live and you have come this far. Good luck and Best wishes!
Helpful - 0
1840891 tn?1431547793
Oh, I am so sorry to hear that you're feeling so bad! The interferon can really trigger a whallop of a depression in those who are susceptible. I've always been very susceptible to it and have had to go WAY up on my dosage of antidepressant to be able to manage at all. Which one are you on and what was your starting dose? I was on 50mg of Zoloft before treating but ended up at 200mg by the time I was halfway through tx. Do be sure to tell your doctor how depressed you are getting, and let that dose go as high as it needs to go. You'll be able to decrease it again once you have finished tx, but right now the priority has to be on maintaining a state of mind that is at least good enough that there is zero risk of suicide. That's not only a huge waste of a whole life, but its also a huge waste of a LOT of effort and suffering that you've already gone through! Just keep on reminding yourself that this is temporary, and that its an investment you are making now that will pay huge health dividends later. Getting rid of the virus is well within range now and very much worthwhile!

I second what others have said about getting a prescription topical steroid for the rash. I also wonder if anyone told you to avoid sun? These meds make the skin very sensitive to sun, and exposure is very likely to trigger more rash. My dermatologist gave me lots of advice for the rash, but avoiding sun was at the top of the list. Other items were to avoid soaps that have deodorant or antibacterial ingredients, to use Aveeno moisturizer immediately after showering, and to use steroid cream on the rash. I was given Triamcinolone, but whatever steroid your doctor prescribes should be fine.

I also lost lots of hair. It's a little bit less conspicuous with a very short haircut, but the best solution when its gotten really thin is to wear hats when you go out. I had fun with hats and gathered a great collection of them from cheap online shopping outlets. I even made a couple myself from patterns I found on YouTube. It WILL grow back, so don't worry to much over it. The sweats hit me really hard too, and hardly anyone else complained about that. I had to change my sheets almost every night, and during the day I often had completely wet hair just from sweating. I looked like I just got out of the shower! It was extremely annoying, and I have a ton if sympathy for you. Again, just try to keep reminding yourself that it is temporary and you are putting up with this now so you can be healthier and happier later on. It us worth it. I had to treat for 48 weeks, but now I'm 6.5 months post-EOT and I'm SVR. It is so wonderful to know that that damn virus isn't going to kill me after all! Please post again and let us know how you are doing. We all are worried about you and really want to help!
Helpful - 0
766573 tn?1365166466
I saw where you were diagnosed just last September and now you are treating and on week 9. What a whirlwind this has been. Er.. actually, roller coaster probably is a more apt work   You have come so far in such a short period of time. I am so sorry you are feeling like this. Other than your platelets I was wondering how some about some of the other values on your labs.

Hair falling out and sweating all the time sounds familiar. In my case when I had a huge hair loss during treatment I discovered my TSH (thyroid stimulating hormone) had shot up to double digits. If you do not have a TSH scheduled I would ask for one. The Riba can lower haemoglobin which in turn can cause anaemia.so be sure to ask about that on your CBC. I second what MsKiity said about skin problems as well.  These meds can also irritate skin so have someone look at your rash. If over-the-counter products are not helping some people take an oral antihistamine but what really helped me was a prescription topical steroid. I used Clobetasol which is pretty potent but it eliminated whatever I had on my knees and toes.

I could go on but the point is a huge part of treatment adherence is managing side effects. I am glad you are on an AD especially if it helped you out of the state of mind you were in. If the increase in dose is not helping I agree with Rivil and strongly encourage you to talk to your doctor about this. Another aspect is support. I am not sure how many people know you are treating but this can be a rough and lonely experience on your own. I am not sure what your schedule is like but there is a lot of support on here ~ especially for those times where you feel strange or alone and just need to feel connected to people that know how you feel. There are people on here who worked during treatment; hopefully maybe a few of them will post.

I hope you continue to post and let us know how you are doing. I finished 48 weeks of treatment in December and I am still trying to put the pieces back together. I went through times during treatment where I wondered if this would work. And times when I felt very alone. Those were the times I came on line or walked my dogs or worked out side. Anything to not listen to repeated thoughts and feelings about how crappy I felt. I know that isn't much but sometimes a diversion can work wonders

Hang in there :)
Helpful - 0
Avatar universal
Rivil's advise was good. Also, the treatments can produce some serious derm problems (especially triple therapy so if on triple... your doc must be advised of derm problems/rashes immediately). Beyond that, my general condition (derm, energy, mentation, labs) made huge negative moves the first 8 weeks then eased up though still continued a gradual decline to the last day. Had to go on Nupogen when my ANC reached 390 in week 20 of 24. But there is a light at the end of the tunnel... 6 weeks post treatment now and my 4 week labs were all 1/2 way back to pre treatment levels and at the min normal lab values. Still get tired at mid-day, have maybe 10% of the derm itch left and get hives on my arms from the sun after 30 min or so, but feeling a bit stronger and clearer of mind every week. Good luck.
Helpful - 0
Avatar universal
Hi,
You need to talk to your Dr. now and show him/her the rash. It is also important that s/he know that you are very depressed.

Hopefully the people familiar with your sx will chime in and offer you some pertinent advice.
The fact that you have thought of killing yourself is something that has to be dealt with now. Please talk to the Dr. and get some relief, do not wait on this.
Helpful - 0
4670047 tn?1375730401
I think you are from what I remember. I tried looking at the messages can't find the old ones!! You are treating for 24 wks, correct? If you can't get out, try having someone stop by, really it forces you to talk. Tell them your not up for a lot, but it does take you out of it for a bit. Did you go to the derm for your rash?? I'm still taking Hydroxy-zine tablets and using the Ultravate 0.05% ointment. As OH said do anything to get food in you. I bought the little cartons of flavored milk. Sometimes just sip them slowly. It's better then nothing. Pick your best time to have a meal, even if you take 4 bites of it. Try to get into a habit. Mine became lunch. I still can't do dinner. Breakfast is yogurt. I'm also loosing my hair! But it's just hair. I'm determined to finish. It gets bad I know. But it got bad for lots of people on hear and they did it. We can do it also. Go to my journal and read the animal stories!! Play tricks on yourself. I wouldn't turn the tv on until a certain time. I latched on to a fellow on here and read his stuff. There isn't a person on here who won't help you. Ask me anything ill try to help. Just want you to get it over with! I'll get you a new outfit. Lol! Also reading about others you will find it to be comforting that your not alone!!!!          
:):):)kitty:):):)


Helpful - 0
4670047 tn?1375730401
Are you by yourself??
Helpful - 0
163305 tn?1333668571
Consider that you are on a roller coaster ride. You'll have ups and downs and the good part is eventually, the ride will be over.

Do eat. If you can't think of food then try soups and smoothies. You need nutrition and walk as much as you are able. Gentle exercise helps too.

If things get really bad, talk to your team about reducing your dosage. But try to stick it out.
Good luck.
Helpful - 0
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