Hep C Discussion Forum

coolheat · Senior Member

RE: Post Tx aches and pains

coolheat · Senior Member

You're Funny, seriously if you have a massage therapist, sounds like a little sciatic work wouldn't hurt. Get that out of your, a stretch after getting up is good too. I would also think the makers of Harvoni would want to know all about what people are experiencing. Like don't tank the stock, I mean train now, its just really rolling. Nice hearing back from you. I'm looking forward to being able to hike and get out in the mtn.s too. Coolheat

Gracie · Guru

Your right shadow cats. Start a thread with post treatment side effects. My pharmacist went so far as to say we are ginea pigs as the first line of treated harvoni-ites. There is obviously going to be things happening that weren't predicted, and having them documented, at the very least, will tell other post treatment people what they might expect.

shadow10cats · Senior Member

Dear Coolheat please come to my house and give me a massage :)

I have to agree that often the thing we don't feel we can do (like exercise) is the one thing that will help us feel better. whether its stretching the muscles to loosen them up that helps or the endorphin high from exercising. i know that once i get myself out in the mountains hiking i feel awesome. i have said so many times over the years that after about an hour of hiking i don't feel like a sick person at all!

However I am having a difficult time with this back pain. it is just awful when i first get up. sometimes i literally have to roll out of bed & can't stand up straight. And as anyone knows, pain really drags your motivation down too. i can not remember the last time i woke up and felt half way decent. and you get sick of it and it messes with you big time.

i do want to be perfectly clear i do not regret taking harvoni & would take it again but i want to get past this and i am disappointed i don't feel better. i know at work that people never really saw my Hepc as a health issue. I don't know if they simply didn't believe i had it or were just ignorant on how devastating it could be. now that i am back to work it's like they expect me to be this superwoman and i am just not even close to that. i know my boyfriend is disappointed also as he was hoping to have his ol girl back!

To Ro: i think that Ro has an excellent point that we should tell Gilead about this stuff. If there is a link to the disease, the drug, the drug killing of the hepc; whatever - i'd want them to know so they can look into it and maybe provide some info on the outcome of these post treatment issues. maybe we should start a new thread and have people list their stats such as: name, age, pre treatment diagnosis, treatment protocol, results & list all issues they had before & now & anything suspect. yes i had lower back pain before but never ever like this. so what's the link? if we could do a thread like that & not get into discussions so much just keep it more stats then after it's been up for a month or so we could forward to Gilead or just give them the link to check on it for their own information.

whatcha all think about that?

coolheat · Senior Member

Hi shadow10cats, read your post. Sorry you are having such pain. I also have a osteo-arthritis in my hips and sacrum, + degenerative disc disease. Terrible pain, they had put me on some pain meds, not good idea for this person. Have found out that if I go to gym and strengthen core and glutes, and hip flexors it has helped the pain. I stopped going to gym, and my BP has gone up and am having some pain again in the sciatic area's. Will go back to gym and do some easy stuff and slow tread mill to keep it all loose and BP down. Happy you are post and clear. As a massage therapist, I am aware that some drugs, lots of our clients have been on chemo and they have had us help push the drugs out of the tissue. Some drugs won't leave the tissue without being prompted. It also feels better moving any lingering inflammation out of already inflamed areas. I am not a Dr. and speak only of our 17 years of therapeutic and deep tissue massage experience. Marsha

Ro · Senior Member

BJ,

we are on about the same timeline for Harvoni..and near the same age

it is now 2 months for me and I have intense mid back pain cry towards the end of treatment I had some kind of flare up that MD thought was gout, but it was not ...I had contacted gilead and they said there were no other complaints at that time of joint or back pain they were logging my symptoms to keep track of any side effects...being we are the first go around on this treatment.. Maybe you should call Gilead and let them know.....

All signs say I am SVR. My varicies are better, but the joint pain is awful... I slept on the floor one night because it was the only way I could get comfortable

hopong we find some pain relief!

ro

shadow10cats · Senior Member

I posted this same stuff on another similar topic but then saw this one. so sorry about the repeat...

About 2 mos post treatment. Haven't posted in a while bec I have been having some issues with fatigue and raging lower back pain. I know I have arthritis; degenerative disc disease but it never bothered me as much as it has now. Sure Im older but for crying out loud this is just ridiculous. I wake up in the morning in pain or should I say the pain wakes me up. I've actually had dreams that I'm being hurt or shot or stabbed in my lower back but it's just the pain in my lower back taking effect on my dreams. How crazy is that? Could it be that the Harvoni has something to do with this flaring up so badly? I don't know how since I'm off it. We even went out and bought an uber expensive mattress to no avail. Really kind of sucks that big wazoo. It's a beautiful day today and I picture myself mountain biking or hiking - Have these beautiful spots in the Adirondacks that I want to be but hiking is grueling and my lower back isn't allowing me the pleasures. I haven't posted bec I didn't want to be negative or scare anyone who is starting treatment. Don't get me wrong I am so happy and thankful to have that dragon off my back and would do treatment again in a heartbeat to be rid of it. As this thread indicates I am not alone which at least lets me know it's not in my head. But I gotta say I have never felt such horrendous pain before. Thankfully it is worse in the morning and will subside somewhat about mid day so I feel like being a bit more active. Hopefully it will subside and my body adjusts to not having the "dragon" raging thru it. .

Tig · Admin

Hi Sofi,

It's nice to hear from you again. I'm sorry about all of the ongoing problems though. We have been hearing some complaints from members recently, especially the leg discomfort and some back pain, but some have minimal or no problems at all. The diagnosis of reactive arthritis explains some of the pain and mobility issues. I guess the bright side is that you're seeing improvements of late and I hope that continues. I think there's much to learn about these new protocols.

Your other news is wonderful. Still undetected, WOOT!! I know that put a =) on your face. Hearing news like that never gets old. I hope you keep improving and enjoying your SVR. Take care and good luck....

sofi moore · Veteran Member

Hi all, I finished treatment August 2013. I was on the Ion 3 trial which was what is now called harvoni. I also had ribavirin. Anyways, my legs have been a nightmare. And I have felt so alone. My doctor thinks I'm crazy. I'm 37 and my mobility was severely decreased. I still have pain and swelling in knees and ankles (plus plantar fasciitis and hypothyroidism which I had none of this before the trial) but I am better. I can still have bad days where I hobble and limp but am way more active than I was. I exercise daily and went from being only able to withstand a half mile walk (and slow) to now over two miles (and fast!). Hopefully this will go away. The rheumatologist diagnosed me with reactive arthritis. I don't have anything to offer but reading this let me know I am not crazy and that the medicine did indeed do this and that it's not conversion disorder (aka hysteria). And my doc recently checked and I am still undetectable. I am very grateful for that. (Those who know me from the ion 3 trial thread, I am mentally and emotionally better now too. I had side effects from hell!) Good luck to all, Sofi

rltan · Member

Thank you for the info. I too have finished my Harvoni txt. At week 3 into 4 EOT my arthritis came back with a vengeance, I also have headaches sometimes but not every day. I hoping week 5 starts off better.

I also tested undetected after 8 weeks and prey and hope for all of us here.HAPPY VALENTINES! !!

Tig · Admin

Hey 4L,

I want to thank you for sharing that link! I found it very interesting considering it pertains in part to the old SOC's with Telaprevir and Victrelis. I do believe as the article and Barnacle mentioned, SVR may be an answer to the arthritic conditions (joint aches and pains) we share. It has been over a year EOT for me and those issues have been severe at times. Fortunately the Naproxen I was placed on has helped and I've been able to start reducing the dose. I'm going to accept that as a sign that the problems are diminishing as time goes on. I believe we call that a big WIN for SVR. Let's continue to look forward to better days and good news that articles like 4L has provided!

Tig

Barnacle · Senior Member

Thanks fourlocos, the article does suggest improvement can happen after successful treatment.

My symptoms feel worse post treatment but I have come to believe it's because everything else feels so much better, I just notice the stiffness and aches more.

fourlocos · Senior Member

I found this when I was exploring my constant aches for over 20 years now.

http://www.rheumatology.org/practice/clinical/patients/diseases_and_conditions/hcvassociatedarthritis.asp

Barnacle · Senior Member

Is anyone experiencing a reduction in symptoms with this or is this something I am going to just have to get used to. My Dr thinks my aches and pains are just age but I didn't have this before Tx and I am worried about what damage anti inflammatory drugs can do to my already damaged liver.

Rubye · Senior Member

Thanks Malcolm. That's good to hear because usually I have flare-ups that are short-lived. I'll give it a try. I also take Magnesium on a regular basis and it alone completely stops the killer cramps I used to get at night.

Happy golfing!

mallani · Guru

Hi Rubye,

I did take Mobic (15 mg) for about 4 weeks when I still had muscle and joint aches and pains. I'm pretty sure these were all Interferon related. These have now mostly gone.

It's very hot and humid here, and yesterday I took a Mobic (7.5mg) and magnesium tab. before golf. Keeping the fluids up is obviously important, so I probably drink about 2 litres of fluid during the round.

Mobic works immediately and there is no problem using it in small spurts. You need to take it with food and I don't worry about the slight damage it may do to my liver.

Rubye · Senior Member

Malcolm, I saw that you were taking Mobic earlier and am wondering if you have needed to take it over the original month you intended.

My rheumatologist prescribed it for me a few months ago but I've been afraid to take it because of what it might do to my liver. However, I am at a point now to where not only are my knees giving me a hard time but also my hips and neck. I have CPPD Disease (Psuedo gout) and since I finished S/O tx I can hardly walk more than a block or two.

Does anyone know if Mobic (meloxicam) works with one pill like naproxen does or do you have to wait for it to build up in your system before it starts working? I've also sent an email to the doctor but I would like to take one today and know I won't hear back from her for 2-3 days.

Barnacle · Senior Member

My wife was researching causes of these aches and pains, as unrelated to Hep C but said I was the poster boy for vitamin D deficiency. If that was the case fish oil would likely help. I am taking supplements and believe I am improving already

mallani · Guru

Hi Duane,

Good luck with the research into fish oil! There are so many articles, but few from accepted sources.

I've got no idea whether fish oil is beneficial. I no longer have joint pain or stiffness but this may have nothing to do with my fish oil ingestion. Perhaps it is helping resolve my liver fibrosis?

I was told the main ingredient is the DHA component- mine is 250 mg, which is in the accepted range. I'm sure big doses (>1gm) may be a problem. Also you need to take the fish oil with food, to combat any bowel irritation.

For you, with low platelets, it may not be a good idea, as bleeding tendency is one of the 'side-effects'.

My fish oil does not contain Vitamin D.

I assumed your PCP was like a GP here- few have any detailed knowledge of liver disease.

Good luck mate.

Dzdayscomin · Senior Member

mallani wrote:
Hi pamelajean,
Not sure how we got on to Vitamin D. Vitamin D supplements are indicated if your blood levels of Vit D are low. You increase the dose until your blood levels are normal. There's no doubt that some HCV patients tend to have low Vit D levels, and this is not good for liver fibrosis.
Duane, I was told Fish Oil is OK in cirrhosis. However, in your case, be guided by your Hepatologist, not your PCP. Cheers.

I don't take fish oil at all, vitamin D I do take, but only 400 iu/day and living in the upper mid-west we are prone to low D levels as a result of environment (meaning we lack exposure to sunlight because we are bundled up for about 6-8 months of the year)

My PCP is actually more than that, he is specialized in adults with chronic health problems like mine....which is why I transferred to him, my hep doc is the one that actually suggested taking some D to see if it would help with stiffness and aches and pains, and my PCP was the one that said that like any meds taken by cirrhotics it needs to be monitored because of poor clearance issues, and he also said that unlike vitamin C or B where excess is excreted thru urine vitamin D is not and actually can stack and you can obtain toxic levels....of course at only 400iu/day that is unlikely, but if i was taking say 1000+ per day this would be a concern to him....I believe he said fish oil is similar.....great ! now my brain is thinking it's time for some googling to see what I find.

Either way thanks for the response Mal.....

Duane

mallani · Guru

Hi pamelajean,

Not sure how we got on to Vitamin D. Vitamin D supplements are indicated if your blood levels of Vit D are low. You increase the dose until your blood levels are normal. There's no doubt that some HCV patients tend to have low Vit D levels, and this is not good for liver fibrosis.

Duane, I was told Fish Oil is OK in cirrhosis. However, in your case, be guided by your Hepatologist, not your PCP. Cheers.

pamelajean · Member

I'm not sure I agree with your doc....or mine. I've been taking 5,000 IU of D3 since shortly after dx and that included during tx with S/O

Vitamin D Healio Link

Risks for advanced liver fibrosis and odds for achieving sustained virologic response were affected by vitamin D levels in patients with hepatitis C virus who were taking pegylated interferon-alfa with ribavirin in a recent study.

Researchers conducted a meta-analysis of 14 included studies published from 2011 to 2014 after a literature search of PubMed, Scopus, Lilacs and Cochrane Library databases. Seven studies focused on vitamin D andadvanced liver fibrosis (ALF) in treatment-naive patients with chronic hepatitis C virus (HCV; n=1,083), and 11 centered on vitamin D and its relationship with patients with chronic HCV who achieved sustained virologic response (SVR) with pegylated interferon-alfa plus ribavirin (n=2,672). Four studies were examined in both analyses.

Data indicated that almost 70% of all patients had 25-hydroxyvitamin D(25[OH]D) levels that were considered suboptimal (<20 ng/mL or <30 ng/mL), and almost 50% of the patients displayed deficient levels of 25(OH)D (<10 ng/mL or <20 ng/mL). Greater suboptimal levels of vitamin D were observed in 82.7% of patients coinfected with HCV and HIV vs. 66.2% among patients with HCV.

Vitamin D status was associated with ALF, including cut-offs of 10 ng/mL (OR=2.37; 95% CI, 1.20-4.72) and 30 ng/mL (OR=2.22; 95% CI, 1.24-3.97). In the SVR studies, pooled ORs showed an association between cut-offs of 20 ng/mL and SVR for patients when a specific HCV genotype was not stratified (OR=0.53; 95% CI, 0.31-0.91). Heterogeneity also was observed across the SVR studies (P<.001).

This meta-analysis shows that a low vitamin D status in CHC patients is associated with a higher likelihood of having ALF and lower odds of achieving SVR, suggesting the utility of vitamin D screening in HCV-infected patients, the researchers wrote.

Disclosure: The researchers report no relevant financial disclosures.

-- Edited by pamelajean on Friday 5th of December 2014 08:40:12 PM

-- Edited by Matt Chris on Thursday 15th of January 2015 04:46:48 AM

Dzdayscomin · Senior Member

mallani wrote:
I'm not much of a fan of supplements etc.
However, my Rheumatologist said he takes fish oil. I thought that was good enough for me, and I've been taking it ever since. Perhaps it helps. You do need a decent dose, ~3000mg of Omega-3 per day.
I've also started taking a Magnesium supplement, when I'm playing golf on a hot day. It's said to reduce muscle cramps and spasms. It seems to work.
Pilates is also said to be the best way to stretch ligaments, muscles and tendons. All my golfing mates do it 3 times a week. I'm not that desperate yet. Cheers.

Interestingly my PCP told be to be careful with fish oil and vitamin D being a decompensated cirrhotic and that you can build toxic levels due to clearance issues? Any comment to that ? Thanks

Duane

mallani · Guru

I'm not much of a fan of supplements etc.

However, my Rheumatologist said he takes fish oil. I thought that was good enough for me, and I've been taking it ever since. Perhaps it helps. You do need a decent dose, ~3000mg of Omega-3 per day.

I've also started taking a Magnesium supplement, when I'm playing golf on a hot day. It's said to reduce muscle cramps and spasms. It seems to work.

Pilates is also said to be the best way to stretch ligaments, muscles and tendons. All my golfing mates do it 3 times a week. I'm not that desperate yet. Cheers.

hrsetrdr · Guru

I just got a "reply-to" email notice regarding this thread, which is still relevant in my life as I'm still pursuing strategies for minimizing the myalgia and maximizing a re-constructive exercise regimen.

mallani · Guru

Hi all,

We are aware that HCV is associated with a variety of annoying problems. Arthralgia (pain in the joints), myalgia (pain in muscles) and fibromyalgia (pain in joint capsules and tendons) are all common. Whether this is autoimmune or due to direct action of the virus doesn't matter. We are stuck with it. The important thing to eliminate is Rheumatoid Arthritis. If you go all the way back to my original post on this thread, I list the various blood tests necessary for this.

Interferon also causes 'reactive' arthritis, which causes very similar symptoms to RA. These problems ease with time, but in my case, it took a year.

The good news is that SVR brings an improvement in the various joint and soft tissue problems, but again this takes time. Exercise helps greatly. Occasional use of low dose NSAIDs like Meloxican also helps.

Remember we're all getting older, and our joints and muscles are too. We are also more aware of any body changes after treatment, and tend to worry more about things like 'arthritis'.

If you're really concerned, get a referral to a Rheumatologist. Cheers.

thepoet · Veteran Member

I completed 24 wks of treatment with Sovaldi and Riba on Oct 18. On some days I feel as though I'm 80 years old. My joints and muscles ache so bad. My bedroom is on the 2nd floor and my knees now hate steps. Even my ankles hurt. I am now living in NC, and have to purposely exercise, different than NY where just living is exercise. So now, on most days, I walk between 4 and 5 miles. Today is a good day. No aches...no pains. I read in one of the threads that if you don't use it you will lose it. So I guess that means I must remain active, drink much water and eat as healthy as possible.

lacey · Newbie

As I read all the posts, I don't feel so all alone in my pain. What is different is that I actually got a diagnosis. Fibromyalgia, which is chronic, very manageable and is common with Hep C patients.

lacey · Newbie

I have your exact problem but tested negative for thyroid, rheumatoid arthritis and inflammatory disease. I was diagnosed with Fibromyalgia, which studies have linked to Hep-C. I have gotten great relief with a small dose of Elavil and exercise with yoga.

I treated successfully in 2012

congrats and I hope you are feeling better

wilsondog · Senior Member

Hey All! It's been ages since I've been in here and 2 years since I started treatment! I finished in July 0f 2012.

My joint pain was severe and has been addressed by way of thyroid treatment. I have hypo-thyroid, which is very common among us post-treatment folks and though it's not always advertised, low-thyroid can cause joint pain and plantar fasciitis, which is foot pain that is worst at the end of the day after you've been on your feet, then sit for a bit and get up and walk...ouch! It's also painful first thing in the morning.

I am currently on Armour thyroid, which is a naturally -dissected pig thyroid that my endocrinologist isn't crazy about because it's inconsistent in it's potency, but it has worked better for me than synthroid did. (synthetic version)

I do still get joint pain, especially in my knees. But NOTHING like it was about 1 year post treatment.

The plantar faciitis is still an issue, being addressed with custom orthotics and the thyroid meds, but that's a slow one to heal (no pun intended)!

Remember this is a tough treatment to recover from and it's slow. Healthy diet, exercise, and addressing those issues as they come up will help you see the light. You will get fluffed off from time to time, but be persistent!

JoAnneh · Guru

I need joint pain relief too.
Had it before treatment but it was not
Constant. My right hip, elbow and feet hurt
Daily. I made SVR.
I like being active!
Best wishes to all.

drtminor · Newbie

Thanks hrsrtrdr. I have achieved SVR and am blessed from it. Never would have dreamed of having these aches and pains although All I can get out of my Doc is that I have osteoarthritis. My GI will not see me but by email only and does not feel any of this is caused by the treatment. I have a visit with the orthopedic doc on Thursday. What should I expect or ask? l

hrsetrdr · Guru

Hi drtminor, welcome to the forum. Whether or not these muscle & joint pain and stiffness problems are permanent or will go away- it's hard to say. I am 16 months post tx and still struggle with these issues daily, but I have hopes that "in time" these matters will resolve. Maybe not 100%, but hopefully; no one knows(or could know) for sure.

I try to relieve the pain with minimal poses of OTC meds such as Tylenol and Ibuprofen; heating pads work really well. I try to keep fit with muscle toning exercise, as far as I can, without aggravating existing joint & muscle discomfort.

Good luck, I hope your post tx recovery goes well.

Q: Have you attained SVR?

drtminor · Newbie

I am new to the forum and have been off Hep C triple therapy for close to 10 months. I am experiencing severe pain in my left hip, left thigh and lower back. The worse pain is that sharp pain in the middle of my left thigh. The doc says it is arthritis in my hip. I went to physical therapy and that helps some. My daily stretching is helpful but requires a lot of discipline--without any long term impact (for most days I have this severe pain). Some days are worst then others but never to the point where I can't function. I do office work so I sit all day. However, I am very active and will not allow this to keep me down. I have been on Tramadol which works, but I am very concerned about the hepatic side effects (purported) and the possibility of addiction. I alternate days with Advil and Tylenol with some relief. I have read in the forum that this pain may pass or go away after 12 to 18 months post treatment. Any truth to that or I will I have this condition forever?

2willy · Senior Member

hope you are doing better Teddy, I experience the same but my breath has come back but sweats etc do come back, I guess they were right and it will take time to recover, joint pain is getting better I use a herbal and it took a while to kick in but seems to be getting better, message me and I will give you the name, good health to all

bill and the girls

TeddyTrout · Senior Member

All of my joints have really been very painful this last week. I was really feeling quite good about myself and how well things where returning to normal. I have gotten really realty cold here this lasts week -38 C > with the wind chill and we have had 12" of snow in two days. I shoveled out the porches and the sidewalks 3 times during the storm and felt really good about how I managed to complete the job and didn't hurt and had no problem breathing and suffered little fatigue. Then this Tuesday I had insomnia and it got worse from there. Then my world crashed and burned. 3 days ago I had the Feds come on Thursday and do a census interview on my living standard over the last year at 1 PM and it took until 3:30 PM to complete. It had really caused me to grow weaken with intense brain frogs and to suffer waves of fatigue to come upon me near the end of the interview. The workers battery on her notebook died and the Federal program didn't have a auto save and she lost all the data. We decided to re due the interview by phone the following day. That evening a dear friend took me out to watch the Olympic Canadian Curling trials. The weather had turned really ugly with -45 C with gusting winds. I dressed for it and only had to walk 2 city blocks to the arena but I was overcome by the weather and stared to recede back to the treatment SX days. I watched the event and made it back to the car and home. I relapsed back to the how I felt two months ago. I spent the rest of evening in bed and slept 20 hrs. I had to change mt night clothes twice as they were very wet, I couldn't breath and wheezed all night. My mouth returned to being very dry and my flem dried in my throat and mouth and I had a bit of a panic attack as my puffers didn't help much. Every breath I take is a wheeze and hasn't let up. I fell so miserable and I guess a bit frighten That my lungs won't clear and I'll have to carry a Oxygen bottle strapped to my back and my life will be worse off than before this hellish 48 weeks of treatment. I can't sleep because I'm wheezing so loud with every breath. I just feel like I'm right back in treatment SX I feel so miserable and depressed and I'm sorry to lay this on you all.

JoAnneh · Guru

Lady, great to see you on the forum! You were my inspiration

that a woman could survive 48 weeks of treatment.

Now we are both SVR! So grateful!

I am having joint pains etc... Worse

than ever as in I don't want to exercise by walking.

Hope we improve soon!

newmex · Senior Member

Terry, you know that is funny. I also used to get fever blister occasionally, a lot of times it was associated with stress, and I cant remember the last time I had one, its been years. Would be just one little added benefit. Haha. I guess this stuff is all anti-viral so maybe we are all getting benefits we don't even know about. Good luck, hope it cures all that ails ya!!
You would have to be a heck of a salesman to market this stuff as a herpes cure though.

-- Edited by newmex on Wednesday 4th of December 2013 02:21:45 AM

Terry · Senior Member

Funny all of you should be mentioning the disappearing ailments because I used to see a chiropractor every month or two and also have had a mild case of herpes that for anyone that has had it usually shows up when you are run down or very stressed. And I have been both but since I started treatment I haven't been to my chiropractor or seen the herpes since. And you can't get more stressed then during treatment so is it possible that the drugs killed that virus at the same time ?

newmex · Senior Member

Tig56 wrote:
I had real problems with gout too. I never attributed it to HCV though. I am convinced or was, that it was due to my lifestyle and diet. It got so bad I couldn't walk at times. I also got relief from Indomethicin and ultimately was prescribed Allopurinol for it. Once I started HCV treatment I was getting quite ill from the various meds I was taking, so I stopped taking most of them and the nausea stopped. I haven't taken anything for gout since June and haven't had a bad flare up since. It would be nice to think that the triple therapy has stopped or improved some of my other ailments as well.

Cant comment on end of treatment yet, have only been on peg/riba for a month, but have had pain in hands and finger especially for years. Since I have been on the meds pain and swelling has been reduced by probably at least 75%. Don't know for sure if its from meds, slowing down on work or combination of the two. I'm hoping that its a symptom of the hep and as I eliminate it a lot of problems will go with it. So far so good

Tig · Admin

I had real problems with gout too. I never attributed it to HCV though. I am convinced or was, that it was due to my lifestyle and diet. It got so bad I couldn't walk at times. I also got relief from Indomethicin and ultimately was prescribed Allopurinol for it. Once I started HCV treatment I was getting quite ill from the various meds I was taking, so I stopped taking most of them and the nausea stopped. I haven't taken anything for gout since June and haven't had a bad flare up since. It would be nice to think that the triple therapy has stopped or improved some of my other ailments as well.

DeRanger · Veteran Member

Malcolm et al,

Thanks for this thread. I had gout attacks a few years ago, prior to tx, but did not had any during the 48 weeks, except for the last week of tx. I had a gout flare-up and took course of Indomethicin which I had from previous treatments and felt relief from pain and swelling.....flared up again last night, started another course of Indomethicin and will be seeing GP and gastro in next week or so.

Finished 48 weeks of tx last Friday (Nov 29) and wondered of this was a sx from the treatment - will continue to monitor it all and see where we go from here. Thanks for the info on other NSAID's and I will be asking about the best course of tx for the gout and possible dietary contributing factors.

Any information along these lines would be appreciated. Thanks for all your expertise with this and your willingness to share.

Bill

Irish Lass · Newbie

Malcolm,

Thanks to you (& everybody) for the warm welcome, this thread is exactly what I've been looking for. I've just turned 44 (have not gone through 'the change') no history of RA or osteoporosis. I have another appt. with my orthopedic surgeon on Friday, then the endocrinologist on 12 December, I have noted down all the above to ask if they will be checking for that in addition to measuring bone density. It's just so strange, fortunately, I was never acute with HCV, just chronic, never sick (even though PCR's prior to treatment showed HCV active in my liver).

The side effects of the treatment at the time (living in Ireland) were ****e (if you'll pardon the vernacular) but again, was fortunate that I could still work (did my weekly injection on a Friday after work, so would be *really* sick all weekend, then just *normal* sick (but able to cope) taking the copegus ribavirin capsules daily. I experienced no bone symptoms at the time, & cannot recall being advised at the time that might be an issue. The main concern Prof. Hegarty & the team at St. Vincent's had was depression, as one person being treated at the Liver Unit there committed suicide. I was in my mid 30's when I started the combined therapy, started Jan 2004 & completed in Feb 2005 (EU approval in 2002).

It's only been over the years, I'd get these mad flare ups of pain in my back (lumbar region), knees, hips, neck (cervical), wrists, etc. They'd come and go....then I moved to the US had my two children (daughter, turned 5 in November & son turned 3 at the end of October). And starting at the end of last year, my bone pain just got worse & worse, I thought it was just me, from gaining so much weight during the pregnancies (11 days after my daughter self-weaned, I got pregnant with my son) & I was an "old" mum. But I lost the weight after my daughter, but found it harder & harder after my son, but did lose most of the weight & am continuing to do so....so I went to the OMM (for osteo treatment) chiropractor, regular GP etc....and when it would go away in the past it just didn't this time...culminating in two events - Halloween this year we walked for about 2 hours (in the rain) but my 3 year old was really into it this year, but by the end I could barely walk.

The next day Friday, 01 November, I was in the baby aisle in Walmart, hubby was in the car park with the children, all I had to get was 5 things (the next day was our daughter's first 'real' birthday party with friends from pre-school), I turned (full body) picked up a box of baby wipes (didn't have to bend, it wasn't too heavy), turned to go walk to get rubbish bin liners when there was this 'pop' (which was my pelvis fracturing) it was quite audible actually, no initial pain - for about 5-10 seconds, very surreal...then I thought I'd throw up the pain was so bad & I couldn't walk, couldn't move at all. Thank goodness I had a mobile phone on me to ring hubby to come to the rescue...& we went to the ER (after ringing GP & chiropractor).

And it seems like things are accelerating quite rapidly - bone / pain wise. The morning & evenings are the worst, but it's pretty much constant pain, and you can hear me coming (all the popping / cracking) & everything hurts now, all the time. Obviously the pelvis (right side), my lumbar & cervical regions of spine, knees, hips, elbows, wrists, ankles, feet, fingers....and to top it all off, I'm allergic to aspirin & all NSAIDS...so they have me on 5mg of oxycodone & I supplement with Paracetamol (Tylenol)....it doesn't even take the edge off, but I don't want to be on pain meds forever....and other forums I just browsed (but didn't join) had quite a few people complaining of post Rx bone pain that would accelerate quite rapidly even after a lengthy time after treatment....It wouldn't be so bad if it was just me...but trying to take care of a 5 & 3 year old (I'm in New England & have no family here)...is a bit difficult...not only am I the oldest mum at the school gates, but now I hobble about with a walker...sorry for the long rant, thank you again for the above, best wishes & good health to all. Jenny

TeddyTrout · Senior Member

The gout is 98% gone. I thought for sure it would take a week as it was well swollen and turning that ugly rosy red. Back in 99-01 I suffered increasable amounts of pain and had it for weeks on end. I remember going to the emergency at our little hick hospital and was in almost non stop screaming for 3 hours waiting for the doctor to get there and give me a shot of extra large dose demurral. I was on that 3 times a week shot treatment and was told I could not take drugs to alter my gout while I was on the experiment trials. Living 500 miles north of Winnipeg didn't help at all and the Doctor that started me on it disappeared to practice in the states so I had no one to monitor any of my levels during the treatment, I was lucky I didn't kill myself.

What an huge change 13 years has made in medicine and treatment knowledge. These new drugs that has come to market since that time sure has made a difference in all of our lives and health out comes. Cheers every one.

Tig · Admin

Thanks Malcolm, I don't take it regularly and actually haven't had to for awhile now. It does the job very well though, but as usual the products that work are the harshest on our systems! What we won't do to play another round, lol! I'll definitely keep your advice in mind. I appreciate your help!

mallani · Guru

Hi Tig,

Indomethicin is one of the oldest NSAIDs and can be pretty toxic to the stomach lining. You should always take it with food, and try not to take it regularly. I'm sure it's effective, but I prefer Mobic, a second generation NSAID. I still take one when I am playing golf two days in a row. They are all metabolised in the liver, so I'm very cautious in using them. Although I'm slowly improving, I still get some stiffness and knee pains after a lot of exertion. Cheers.

Tig · Admin

When I was having gout flare ups, my doc prescribed Indomethicin 50mg 3 x day and it was golden for that type of pain and it also gave me great relief for joint pain in general. It's in the same class as Naproxen but gave me better results when I used it. I ended up taking Allopurinol for the gout on a daily basis, which worked very well. I stopped taking that after I noticed it was making me nauseous when I started the current HCV triple therapy. So far my uric acid levels haven't re-elevated since quitting the Allopurinol. You might mention the Indomethicin to your doctor for that occasional joint pain. It works very well for me when needed!

TeddyTrout · Senior Member

Yes thanks for the post. I have had a great deal of problems, not just pain, since my first treatment in 99. It took many years to find a good physician that has actually taken the time to help me through my aches and pains. I have a 6 different specialists now keeping my body parts working. I am hoping this last treatment has me on the mend and many of my side effects from the decease and or the treatments disappear. You all know I'm just dreaming LOL. I will be happy just to gain a few more years with my wife in my life. Right now I am using 200 mil every 12hrs of Hydroxychlorquine for reducing my joint pain and 9 mil of Hydromoriphone controlled release twice a day and it has made my life for the most part with out my arthritic joint and muscle pain for 4 years. 5 years ago I gutted and refurbished my small peacetime house and built a small 8x24 addition. I have had a torn router cuff for about 25-30 years that flared up on me and will need orthoscopic surgery after I recover from treatment. I was scheduled for surgery but it was canceled due to this treatment. I am so looking forward to getting my self on the mend and regaining some of my life back. I occasionally get gout flare ups and I think or blame it on post treatment sx . Like yesterdays flair up and I used some Naproxen, it greatly helped with the gout but I still feel my joint pain for some reason. Oh well time to take some more drugs.

LadyAlaise · Senior Member

Thanks for starting the thread!
I will be seeing a Rhuemetologist (Spelling?) at somepoint in the future (had to reschedule because of gas money)
They want to test me for psoratic arthritis. (I have Psoraisis) (UGH) I was diagnosed with plain ol Arthritis when I was 26. And that was a mild concern for my doc before I started treatment.
I have noticed after TX that my aches and pains seem to be much worse... it sux.

JoAnneh · Guru

My father is 81 years old. He never has joint or body pain
when he wakes up nor during the day.
I thought all my pain was from aging (54)
But doesn't seem the case.

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