Tx is kicking Hubbys Behind!

[hitherdither]

Finally, after weeks I've been able to get back on this site. Password wouldn't work, Medhelp wouldn't email me a new one so I decided to try again tonite and thank goodness I got back in. Hopefully that won't happen again........Anyway....My husband took his 10th shot Friday nite.  Since around shot 5 his bloodwork bottomed out and they gave him aronesp every other week for two weeks which helped really well.  Been going in for bloodwork to see if he may need anymore and will hopefully find out this Thursday what is viral load is and other blood numbers.  Problem is...he'd be doing pretty good on it if he didn't have this arthritis/gout.  He is mostly bedridden. Can't get up other than to go to the bathroom and on days he does feel like doing something like taking a bath or a short walk..he wakes up the next day hurting all over, joints swelled, feet hurting, shoulders, you name it. Can't get out of bed for another 3 or 4 days. His RA test came back negative. Of course his appetite isn't all that great but he's managing with all other sides.  My question is...is this how it's going to be the rest of the 48 weeks?  How can he keep going on like this?  Will it ever get any better?  I've been trying to watch what he eats thinking that may trigger it but if you read about what causes gout/arthritis flareups you'd never eat anything.  Not really sure if it is gout but he has the symptoms of both.  N/P isn't a whole lot of help. All she'll say is some people just can't do the whole tx due to the pain. Hopefull we'll get better answers this next vist.  So far though his tx looks like it's helping.  

Thanks for any responses and hopefully I won't get locked out again.

[Mikkimoe]

Hey you missed your photo shoot - I had your horns and forked tail all ready for you - guess you'll have to stay an angel and answer my questions....

I just saw a top dr at Cedars and he had a few interesting things to say. As you know I have RA and have flares in which the pain is very bad. He said if I start tx that it can throw me into an overdrive immune syndrome (5% chance) that may never go away.
I worry I may not know the difference in a flare or the autominune syndrome - but he says I will - that it is sever pain and swelling in most joints. (Now I just have up to 4 at a time).  I will also be on my RA drugs (Enbrel and  Prednisone)  
He also said that according to some new studies that are not released yet. (he is privy to them) If you are a 2b and UND at week 2 then there is only a 5% variable between 12 week and 24 week tx - so he wants me to do 12. It would be weight based pegintron with wb rib (only 8800 for mini me) You also need a lower VL going in. Mine just dropped to 680,000 from 3,780,000 in a few weeks - it's all over the place with the RA and Enbrel fighting it in bursts.

All so much to take in. I am just stage 1 and can wait but I have age and RA against me and am also very symptomatic - just want this over.

Any input from anyone would be great - btw others..check out my pics...


I am suppose to be highly monitored when I start tx - have to have someone with me always for the first 3 weeks (I have bad reactions in the past to other meds)  and he suggested that my tx be for 12 weeks (I'm 2b). I do not have cryoglbins or ANA etc. which i was hoping I did so I would feel better after tx. My Systemic RA is very bad and we don't want it to go crazy and cause all kinds of other fun things.

[Mikkimoe]

My Systemic RA is very bad and we don't want it to go crazy and cause all kinds of other fun things. I will also be on my RA drugs (Enbrel and  Prednisone)  According to some new studies that are not released yet. (My doc is privy to them) If you are a 2b and UND at week 2 then there is only a 5% variable between 12 week and 24 week tx -
Good enough for me. You also need a lower VL going in. Mine just dropped to 680,000 from 3,780,000 in a few weeks - it's all over the place with the RA fighting it in bursts.

All so much to take in huh?

[hitherdither]

Thank you for the link. Very informative stuff.  I'll study it and arm myself with questions if I ever get to see his dr.  Hopefully this week.  

My hubs was having shoulder pain before he started tx which only made it worse.  He wakes up with swollen joints that are red and hot to the touch.  Very painful.  NP was thinking he had gout and was going to do an uric acid test on him.

I feel for you having RA and doing this treatment. I'm hoping you have a better time of it than my hubs.  Having to tx only 12 weeks is a blessing. Why not 24 weeks?  I thought that was the standard.  Correct me if I'm wrong. I've studied more on 1a's as that is my hubs genotype.

[Mikkimoe]

Hi - sorry to hear about his pain - I have RA and have flares in which the pain is very bad. I am scared to start tx because like Merry said it can throw you into overdrive (5% chance for me). I am suppose to be highly monitored when I start tx - have to have someone with me always for the first 3 weeks and my tx will only be for 12 weeks (I'm 2b). I worry I may not know the difference in a flare or the autominune syndrome - but he says I will - that it is sever pain and swelling in most joints. (Now I just have up to 4 at a time). Here is the problem with the RA factor test - It took 4 months before mine showed positive and I was severly disabled when mine hit 13 years ago. Sometimes it never shows! There is also a sed rate and high WBC help to identify and a few others - see link below. I do not have cryoglbins or ANA etc. which i was hoping I did so I would feel better after tx.  I'd have them check all of the above.
There are alot of people who start tx that get very bad joint and muscle pain. Maybe you can have a phone consult with his dr after researching all this and explain his exact pain and swelling - how many swollen and tender joints etc.

This hopkins site is pretty good; http://www.hopkins-arthritis.org/arthritis-info/rheumatoid-arthritis/rheum_clin_pres.html#labo

[hitherdither]

He is on an antidepressant, celexa.  I've asked him several times over the weeks if he was depressed. He's always told me no but I'm sure he was at first.  He goes to a charity hosp. which isn't the best of care.  Actually, I guess they do the best they can but that still doesn't help. He sees a Nurse practitioner and a Hepatologist.  Neither one will prescribe any kind of pain meds, not even ativan.  My husband is on the methodone maintenance, been on it for the last 10 years. It doesn't help with the pain but it will make him sleepy which is probably a good thing. He can't take tylenol or other certain drugs because it takes away from the methodone.  I've called several times with urgent on my messages but she only comes to this particular clinic on Thursdays and her nurse won't tell you anything.  Stupid because they'll tell you if you need anything call but don't call on Fridays because we are closed.  This is what you get when you don't have insurance coverage I guess. But, we will get some answers this Thursday and I won't leave until I do. Problem is if they do send you to an RA doc it takes up to six weeks to get you in and then a few weeks after that to get any tests results back.  It's like running in circles.

Susie, this is the second time I've heard the word Cryoglobulinemia but can't find anything on it on the net. What is that?

[Susie2007]

Reading your post brought back memories for me. I remember all the joint pain and the false leads from bloodwork until I finally saw a good rheumatologist. RA is often falsely elevated in hep C patients, as are the titers for lyme disease and parvo virus. At one point I tested positive for all 3 and my gastro and PCP were just blown away. Cryoglobulinemia is a frequent cause of RA type pain in HCV patients, however interferon is the drug of choice for that. Also HCV antibodies that go awry and travel around to the joints tend to cause pain in some patients. Strangely interferon can exacerbate that in some and alleviate it in others. If he hasn't seen a rheumatologist I would try and get him an appointment with one who has treated hepatitis patients. Mine put me on a drug for people who have lupus. It was called plaquenil. Within 2 months I was 99% better and was able to get off the plaquenil in 6 months time. That was 1997 and I haven't had any joint issues since.

Wish your hubby good luck.

[merryBe]

sorry that was remeron on my anti depressant, sorry it's late and I get lazy with spelling in the wee hrs.

[merryBe]

yes RA is one of the big concerns and if he hasn't been tested since going on tx for sure get him seen.

I'd be leaving messages, I'd be using words like urgent, or life threathening.
NOt trying to scare you here...
but when you can't get in to see the doc, you can't get a blood draw.
call the heatologist, the rhemmatologist, and your GP  leave messages everywhere and make it sound as bad as you just did.

the idea of treating for the HCV is to get rid of a virus that can destroy the liver..
if the therapy pushes his immune system into such overdrive that his blod begins t attack it's own joints this leads to a very serious and much more likely to cripple and/or kill soon than the HCV itself....so either he will need to be taken off treatment, OR it may be possible if his RA is still negative to adjust his INF Also (should have been done when the Riba was lowered) and/or to give him some help with pain meds and sleep aides for the duration.
as long as the immune system hasn't gone into hyperdrive....that is.
It is very cmmon to feel sick, I do, and spend lots of time on the couch, even to have a rebound from activity...but it sounds like he really needs some help.
Also, the treatment deprived one of ALL of ones reserves of seretonin, which makes pain much more easily felt and causes great depression....and this can manifest as overall tension which leads to much more pain. Have you asked him if he is feeling sad or thinks of dying?  Sometimes men will express their pain, but not admit to the depression.
That depression, even THINKING for a few moments about hw bad it is....makes it ten or 20 times worse....read this to him......if he shows no RA on blood work get him on something for depression soon...you can always wean off the drug when the tx is over.
they have me on Remerol, which helps with sleep as well.
Also, ask the doctor for a trial on Ativan, see if a mild anxiety drug will lessen the symptoms.....for some reason the combo of INF and the continual flufeeling, and the Riba stripping every nerve cell and leaving them jangled is just about as nasty a cocktail as I've ever encountered.  It's like coming down from the 60's all at once....coming down 10 years, each and every day.
Hopefully youll get it figured out real soon....but use words like "emergency" and "highly concerned"....once you call in those terms they are obligated to try to work you in ASAP.  let me know how this turns out..please.          maryB

[hitherdither]

He drinks alot of water since he stays thirsty. His Riba dose was reduced to 800 from 1200 because he lost weight. It is weight based.  She was supposed to check his uric acid level and if it was high she was going to call us back. We didn't hear from her so we suppose that meant it was normal. Can't seem to get any answers when I call so we will get some Thursday.  He stays in pain.  Can't sleep hardly at all and moans all night long.  Can he develop RA during tx?  Should he be tested again? Thanks!

[merryBe]

I'd want to know how close are they monitoring his kidney function, the Riba can play havoc there, and did they stress drink fluids? How high a Riba dose is he on and is it weight based?  THe INF can effext joints, but if he is still neg for RA then he may be feeling joint pain due to fluid, in which case maybe a little duiretic might be helpful.
sorry for your trouble, hoe you get this.    maryB