Hep C Discussion Forum

DianaP · Member

RE: The Aches and Pains of Treatment

bubble · Senior Member

Remember that the dragon manifests itself inside your bone marrow. When it's hungry it takes off to the Liver café for a snack of proteins. Your bones are going to ach now that the virus is dying. Keeping fit is key for me.

Tig · Admin

Good luck on those tests tomorrow Dave! I hope the excellent results I'm sure will accompany them will help reduce some of that pain... I suffered with that same thing, different drugs, but somehow I think it's all related to treatment (whatever it is). Hang in there bud!

biminidave · Member

I just finished my 4th out of 12 weeks of Harvoni and my hands/wrists are throbbing away too. Nothing I can't live with, but I've had to seriously cut back on my computer time because of it.

One responder here mentioned years of migrating joint pain. My doc's think I'm a nut due to my shoulder/knee/back pain that isn't accompanied by swelling. Stiffness yes, swelling no.

Activity does help in lessening the pain, as does warm water. The wife just stands and smiles when she catches me unloading the dishwasher into the the sink so I can wriggle my fingers in the warm dish water.

I'm looking forward to test results from blood drawls that are being done tomorrow. Good results will be way welcome, but this damn hand pain isn't.

Gracie · Guru

Just a quick note to say that I tried a series of hand exercises and I think they helped. The aches went away for awhile. Don't know for sure if it's just a reprieve though so will continue to see if it actually works.

This morning I had the creaky sore feet when I first got up. Again, once I'm up for awhile and walk around a bit, it subsides.

thanks Tig, I really would love to know what is causing this.

drummerman · Senior Member

Speaking of hip socket... I also had a sensation (when my virus flared up around 2006) that was like an ice pick being stabbed into my hip where the ball joint sits.

It was one of those joint pains along with flu like symptoms and vomiting that send me to my doc, month after month.... he finally ordered a hcv test.

Those joint pains are now gone. Thank you viekira!

dm

-- Edited by drummerman on Tuesday 25th of August 2015 01:05:31 AM

Tig · Admin

I have looked into that same thing and basically came to the conclusion that the amount of interferons produced naturally aren't at levels high enough to produce the kinds of side effects we witness with the injected forms of the drug. I think that those natural forms of interferon are responsible (in part) for the viral clearance we see in the 20-25% of people cured of HCV in the acute stage. Unfortunately I'm not able to find any direct research that would indicate the production of these interferons, are responsible for our aches and pains pre treatment, but I guess anything is possible. They certainly contributed to it once started on treatment though, because of the abnormally high levels introduced. Seems to me that the problems experienced pre treatment are most likely due to the impact the virus has had on us. I'll keep looking and if I find anything at all, I'll post it here. Very interesting and worthy of consideration nonetheless.

robertsamx · Guru

I had a thought on joint pain I want to through out to the forum. Our body makes the hormone Interferon to fight off disease, is it possible that the aches and pains we feel before treatment is the result of our bodys overproducing natural Interferon to fight off the HCV infection??It sounds logical,anyone have any solid info on this?? RC

Brian1412 · Guru

I had knuckle Pain before diagnoses, went way down doing treatment, and not a single times since waiting for SVR lab.

I cannot claim anything but what I knew before now that I am done. I am 2 lbs. from my 175lbs steady weight that was the same for 40 some years. everything else is normal for me.

Penelope PePod · Senior Member

That's very interesting. I've had joint pain for years that would move from joint to joint, and I wondered if maybe I had RA. I always felt like a complainer; one week my ankle hurt, the next week it was my fingers, then my hips, and on and on. Poor husband having to listen to me moan and groan. But now that I've read what you guys posted, I have to agree that overall my joints feel better - even the stairs in our camper are easier for me. Now if only my hip pain would get the message!!

Let's not talk about this too loudly - the riba will hear and find a way to screw it up!

bubble · Senior Member

I am right there too. Although I had joint pain for years with the Dragon. My hip sockets especially. During treatment it stopped! Afterward it came back a little, then subsided. (So long Dragon) biggrin What got my concern was my ankle swelling and my glucose/serum reading went way up. I was thinking Diabetes (?) But.....It susided, and thanks to the insight from this Forum I made it threw. Silly Dragon.

drummerman · Senior Member

I had the opposite reaction .. but I am on viekira/riba

My muscles were achy for the past 20 years, joint pain too. The joint pain is what sent me to the doc over and over trying to find out what was going on.

Every morning when I woke up I felt like my body had been physically pummeled all night ( I thought I had a bad mattress, although it was a good , fairly new mattress.

I also had intense pain in each joint of my fingers... I thought it was arthritis.

5 days after starting vike/riba the pain disappeared from my finger joints... it was just gone! I told no one, cause I just couldn't believe it. I believe this was the day my vl plummeted. No more body aches , no more joint pain. No more feeling pummeled upon waking.

The only thing I have now , body-wise' is stiffness w/o pain. I do attribute this to age and hope to address it with yoga and stretching exercises post tx.

This virus and tx is so crazy... literally different for each individual.

dm

Gracie · Guru

I'm with you Jaded, F4, 24 weeker and have been through worse with the other treatments. This really is a miracle drug compared to the past.

I guess I'm just wanting to know exactly what is happening inside my hands and feet to make them ache. To know why they hurt. This is totally tolerable at this point and more annoying and frustrating than painful. I would have taken the harvoni even had I known ahead of time, even though it's making me feel old and worn out.

i am going to try drinking more water, and since exercising helps my feet, maybe I'll get some hand exercises and try them out.

SVR will make the aches and pains worth the journey. I'll think of these aches as little virus warriors fist fighting the nasties away!

Jaded · Senior Member

fourlocos wrote:
I have thought its the Sovaldi as well. Similar complaints from people on any combinations that include it. Glad your getting relief and help from your doctor.

Looking at the listed side-effects of Harvoni they do not include all the side-effects of Solvadi...but obviously should. I have read that there are a number of side effects we have not heard about that have been reported to the FDA. The FDA has no requirement to report issues until at least 18 months after the drug goes on the market and so Gilead and the FDA have no responsibility to the public to let them know. The FDA report can be requested under the Freedom of Information Act apparently. Some of the side-effects I saw mentioned were Cardiac Arrest, Respiratory Failure, Mouth Ulcers, Tinnitus, Chest Pain, Lung Damage. I don't think people should panic and I believe these are the exceptions although I have seen a few posts with reference to Tinnitus on this site. I saw the post here...at the bottom of the page by a poster called...CHepCFree.

http://www.mdjunction.com/forums/cirrhosis-discussions

You can see the omission of the Solvadi side-effects from the Harvoni side-effects in the links below.

Solvadi side-effects...

http://www.drugs.com/sfx/sovaldi-side-effects.html

Harvoni side-effects...

http://www.drugs.com/sfx/harvoni-side-effects.html

I am on week 15 of 24 and I have had off and on fatigue and muscle weakness now for about 1 1/2 months. But I've been through worse and so whatever I have to endure...I will and hope for the best. I have been very fit and active the last 20 years...more so than when I was young so that has helped me a lot. I'm just a bit surprised at the lack of candor about Harvoni going into it from the medical community and Gilead although I still would have taken the drug as I would not have any choice given that I have cirrhosis and would inevitably have much worse problems if not and I'm very gratefull. I'm just extremely anxious now to get it over with and hopeful of then moving on to better times as I'm sure we all are.

-- Edited by Jaded on Sunday 23rd of August 2015 09:43:57 AM

Groupergetter · Guru

I've definitely got the same types of aches and pains. Also worse in the morning when getting out of bed. Hopefully in time this will pass. I've considered seeing a neurologist but will probably hold off. Naproxen does help me a bit. Hope all get feeling better. Take care

fourlocos · Senior Member

I have thought its the Sovaldi as well. Similar complaints from people on any combinations that include it. Glad your getting relief and help from your doctor.

Dzdayscomin · Senior Member

Well I've had all those pains and still do, only things similar in our tx was Sovaldi because you did harvoni and I did the S/O tx.

Moving helps but then that can cause cramps if ya over do it.

I think ya need lots of hydration. My Dr. Put me on our states medical cannabis program....and I will say this........it works!! for the joint and other pains, and nausea, especially when you are monitoring it for those results, it has considerably reduced my use of Oxycodone and eliminated my nausea altogether. Much better than the dronabinol the synthetic version. I have two types a vape pen for immediate relief and then some capsules that I take every 12 hrs......those you don't get any psycho effects from as it is a mixture of THC and CDB, the vape though is very strong and relief comes within 1-5 min. with peak effect 1.75 hrs from dosing.

-- Edited by Dzdayscomin on Sunday 23rd of August 2015 02:59:13 AM

Gracie · Guru

I'm wondering what causes it? I agree, exercise helps with the foot pain. Once I'm up and walking around for awhile it subsides. The hand aches are pretty constant but not intolerable. Just annoying and present. I'm constantly flexing and squeezing my hands. Feels like I've been shucking corn or peeling potatoes for hours kind of sore pain.

I am curious which drug causes this, and why? And it does seem us women are hit harder with this then the guys. Could be dose related ?

fourlocos · Senior Member

I had foot cramping and bone pain that started during treatment. I know what you mean about it being hard to walk in the morning! I would hobble to the shower. Hot water helped it. I even would soak in a hot bath tub often and it helped the pain so I didn't have to take Tylenol much. I tried to avoid it during treatment. My hands joined the party as well. Most of all my aches were hand and foot related. I am 6 months post treatment and sadly the hand and foot problems have continued to hurt me. I do take something more often now for pain. But only two Tylenol per day! I am still paranoid of it. I hike a few miles every afternoon and it actually feels better to be moving. I plan to see a specialist if it doesn't improve soon.

Cinnamon Girl · Guru

HI Gracie, that does sound very painful, and unfortunately I think it`s just part of being on treatment. Harvoni does cause aches and pains for some people. I think you`re right in not wanting to take too much Tylenol but as long as you stay within the recommended dose you should be fine. Make sure you keep yourself well hydrated. I would check with your doctor if you`re worried about it.

Sometimes side effects come and go, and I hope it eases up soon for you!

Gracie · Guru

So my hands have been achy since I've started treatment. Now it seems my feet have decided to join the party. When I first get up in the morning, it's actually hard to walk on them. And right now my wrist is lightly throbbing.

Just curious what others have been doing to help with this? I try not to take Tylenol too much. I'm starting week 8 of 24 tomorrow and have a ways to go Yet.

Also - does anybody know what causes this?

Hep C Discussion Forum

Legal Disclaimer: