Hi friends - I posted this in Neurology but got no response so am going to pass it by my buds here.
As most of you know I have had severe RA (Rheumatoid Arthritis) - for 14 years - been on the biogenetic Enbrel for the last 9 years with pretty good results until the Hep C raised its ugly head
Was dx and tx for Hep C April1 this year (Pegasus and ribavirin) I stayed on the enbrel during the treatment - had to stop tx 3 months in because of a severe RA flare - but besides the extreme joint pain - there is very bad burning and aching and tingling muscle pain in my legs and feet. I cannot walk very far without falling down. (use a cane/stool) Have to keep them elevated most of the time - hot pads and Jacuzzi helps. They tend to wake me up at 3 am every morning - like now...great fun
(Good news is the Hep C remains clear) I plan to see a neurologist in 2 weeks but in the meantime will be starting Rituxan infusions this Thursday to help with the severe RA joint pain.
Do you think this could aggravate the muscle pain or maybe make it better? Should I put it off until I get the neurological exam (which could be a while and I really need some relief now). Problem is I have my docs so programmed that they tend to leave the big decisions to me...also whether to take the Enbrel and the Rituxan together (B-cell and T-cell blocker) - bye bye immune system - but possible bye bye pain as well.
Do you think this is a hepta manifestation from the chemo like nerve damage or neuropathy or post viral fatigue symptom - I also am more fatigued then I was before - have been off the tx for 2 months. I take soma, darvacette and xanax and prednisone for the pain. None with great help. The only real relief is when my orthopod injects me with his special cocktail in my joints and I get all over relief for up to a week. (wish I could do it more often) I also have IBS intermitingly. But not upper body muscle pain so maybe not fibro???
This site has a lot of interventions....Meki and LL - what do you take for your pain?
Sounds like you have similar problems
Anyone heard of the Sativex on the above site (canabis spray? - just in Canada I think)
Is this the same as peripheral neuropathy?
Excuse my ignorance - I'm so sorry for what you're going through and hope someone can give you some info to help. I was tested for RA because of severe sciatica and tendonitis; I was negative for RA but even my mediocre pain felt severe enough!!! I was dx'd with IBS years ago and it comes and goes dependant on ?.... My GP actually tested me for B12 and tested me for the 'intrinsic factor' (in our stomachs which is required to assimulate B12). I had a couple of B12 shots because I was so low. I can't stress what an immediate difference it made and I mean Immediate ..... I came home from the Doctors and felt the pain disappear (and he didn't even test me for B12 because of my pain; he tested because of my IBS and digestion problems). I later googled B12 and intrinsic factor and learnt heaps.
Apologies if this has absolutely NOTHING to do with your pain Mikkimoe, but I'd rather say something just in case it has any relevance at all on your situation. It may not, but I do wish you well on your researching and hope you get some relief soon.
What is your fasting blood sugar? If this is, in fact, neuropathy, you might investigate Lyrica. I would lose the Darvocet and try to get something a little more 21st century for pain. Sorry you're not feeling well. Take care.
For others reading....Me and Mikki both having serious muscle pain issues, fatigue, tho hers is much worse with other issues, RA, it still seems we have a similarity in this muscle pain, dilemma post tx. I am 6 mths. post and SVR.
Where did you hear .....'post viral fatigue symptom' ? I think (God, can't even remember!) I'd mentioned it in a thread but I have been researching that also with my issues. It really needs to be more looked into with us. I've also 'self diagnosed' that this isn't Fibro (can't go to Dr.s yet, insurance issues)
I am REALLY drug phobic! (doing tx was HUGE for me!) and I wouldn't do the celebrex, other drugs Hep Dr. offered ...YET. I felt without proper dx I don't want to start all that and am giving myself another few mths. to 'heal'. During tx and now I use either vicoprophen or Lortab for the pain and only days I have to do physical work (gotten really hard to do 1 job, back to 1/2 days), or be 'up' all day. I have done them in the past so comfortable with them. My liver damage was minimal/moderate and I only take a couple a day to take the edge off the pain, don't want to take the prescribed amount, get attached to them. I will say Darvocette did nothing for it. Your pain is way past Darvocette!? Doing, as always, acupuncture too.
Can't comment on the drugs, questions you asked about but I will be reading this thread for more info.
I think the damage was already done --- and then as the HCV leaves your body and stops producing damage - your body starts to heal.
As your body is healing - I think it's VERY painful.
Remember growing pains as a child?
I think it's akin to that.
I think --- and this is only my own conjecture ---- opinion --- what have you --- that HCV goes into EVERY single part of your body - and attacks, trying to take over the host - instead of trying to co-exist --- as a virus does.
And since you get slowly "used" to it --- as it builds up slowly in your body --- as it is VIOLENTLY kicked out from the INF or Combo TX or whatever kills it --- in so "short" of a time --- the body is left with dead cells or cell structures --- or whatever the virus is called...
and it has to eliminate them --- and heal the things that it killed, changed or destroyed...
Now -- I may be way off base here - but I'm looking at my body's response --- and the types of pains that I am currently having.
I'm looking at whether it will be permanent or long term --- or if it will eventually fade...
I'm just thinking out loud - and I don't know if it makes sense to anyone but myself --- but that's kinda what I am thinking about those of us who have pains continuously after TX --- POST --- and SVR status...
I think it make sense, but who am??? I have had UND status since week 4 of tx, then SVR post treatment. It's been 2.5 years and I still have pain but it's different than in the beginning...........kind of like you said. Maybe healed a little, I'm definately not in as much pain............at least NOT TODAY, could change tomorrow:-)
Yep as of last week still Clear - was clear 10 days into tx - so been 5 months now. But had it for almost 30 yrs sooooooooo (see my profile for stats)
My new blood doctor (what's that? an optomotrist?) Said that the chemo we were on is famous for killing nerve cells - most likely in the lower spinal colomn - sacareliac - where most of mine radiates from....no word on time frames or healing - but great references for neurologists that can test test test - oh joy haven''t been a lab rat for at least 2 weeks.
I go in for the infusions tomorrow and am actually VERY excited about it - pain does weird things to people huh....got my DVD's all picked out - hiorse illustrated magazines - Ipod...ready for a full vampire day.....OK yes I'm in denial that it may be a death sentence but ya know....can't get much worse right now.....so just in case you all don't hear from me....I LOVE YA MAN!!!!
LL - the post viral Fatigue syndrome is a catch all for fibro - chronic fatigue, MS etc that is caused by tx....mine is weird that it is just leg and feet....did you look at the site I mentioned...they call it symmetrica lperipheral polyneuropathy...gee nice name huh?
Check it out and let me know what you think yours is :-)
Good luck today with your appt.I haven't tx yet but my RA enzymes are very high for the past 4 months.
I also had the leg pain and numbing, etc.I had it in my arms,hands.I have severe tendonitis in both elbows.Left little finger numb alot.
Last month I had the nerve conduction test.Neurologist said, he thought that me having no body fat what so ever, leaves my nerves closer to the surface.When you lay on them, Wahlah Pain, numbing sensations.
He also said, the HCV makes your nerves just waiting there, Ready to do damage. I wonder if you are SVR, if that dx would be the same ?
Also I have a very good RA doc and she put me on morphine sulfate ER 15 mg tabs one tab every 12 hrs.Had me on Meloxicam 15 mg tabs one time a day and methotrexate.No Meloxicam or methotrexate now while I have HCV. Hydrocodone as needed for pain...I hate to take pills but I do know where your coming from with the RA.Good Luck in finding the right choices in tx your health issues.Keep me posted what you decided.
I have peripheral neuropathy in my hands, which is the result of treatment (probably some nerve damage in my neck or somewhere). It seems to be declining with time for me, I am lucky, it is mild. At its peak, it is really just a burning sensation which makes it hard to touch paper in particular.
Neroupathy is without question, a potential side of treatment, as to whether there are any treatments, I think there is not much out there.
You guys are so great with your responses - I see alot of research ahead for me - but you all know I love that.
Tammy - so interesting about the body fat part - I actually got under 100 lbs at one point during tx. Have about 5 lbs back since stopping but have noticed that if i am in the jacuzzi or water and not touching anything - My legs feel fine...to weird
My Rituxan infusion was 7 hrs - had to keep slowing due to weird reactions and bad veins - mostly nausia and feeling very dizzy and like I am under water. The tummy went BONKERS - total IBS - swollen like I'm 6 months pregnant - still is - really hurts - can't wait to research the B12 and intrinsic factor - thanks Kristina
Yep Laura and Meki - guess we took a chance and will never be the same but no matter how bad it is I am soooooo proud that I am still UND!!!!!!!!!
Sorry your having the blues, that's bad in itself and throw in the neuropathy and all hell breaks loose. Glad you have something to help with the pain, however I'm sure it doesn't take everything away as I take meds and they just make my pain a little more bearable. Glad to hear that you're still free from the HepC. God Bless
Thanks Fret - your so right...just puts the pain it into a dull thud instead of a load roar...but need to check into some other drugs - getting rashes from the soma and am really starting to abuse the steroids - use to only take 5 mg p/d - now some days up to 20 - hate that but have to get around - have horses to take care and am done with this bed ridden BS.
Tammy - Rituxan is totally different - it attacks the B-cells instead of the T-cells like Remicade and the enbrel I was on. I had bad reactions to the remicade as well.
Google Rituxan - they reserve it for us last liners that have failed everything else...real costly anjd pretty new for RA - it's the main treatment for Lymphomia. Great success rate - we'll see.
Kristina - The tummy is still screaming - I did check my last labs and they did test for B-12 - was fine does this mean the intyrensic factor is a no go?
I know you know the seriousness of taking steroids and I just wanted to ask you if you've tried fetanyl for pain or even Opana? I'm sure you realize you're getting into a very risky area with the Rituxan, aren't you currently on prednisone? Please talk to your doctor and ask which route would cause you the most risks, steroids or narcotics? Also, mention fetanyl as opposed to morphine. I think the Opana was made extended release to be more liver friendly. Not sure of everything, this is just too sticky of a situation not to ask about all your options. You have a lot of options with pain medications that are not morphine derivitives, which are very effective for some ppl.
No I have not heard of those - I will definately ask. I am alergic to so many - mostly anything w/codine or any sulphates. Crazy enough my liver is in real good shape..I was only a 1 on the scale and my AST and ALT is real low now and am still UND..so that's a good thing.
Wish I had a choice with the Rituxan - but I have run out of options....been through all the meds and all the bios...they have all stopped working....I'm a real tough case but it's not a simple one. I believe it was all caused from exposer to silica and chemicals from working the space shuttle for 9 years (stopped 15 years ago - got the RA the next yr) - most the folks I worked with are all ready with their maker. (about 50%) I missed out on the big law suit...had moved to Texas and didn't know....long story but just glad to still be kicking and I'm not talking about kicking the bucket! I have this keen survival instinct and have had to "go with my gut" instinct so many times...I research constantly but sometimes you just have to make the hard decisions.
TY for being a good sport and staying open minded, you'd be surprised how many people are not open to change or other ideas of looking from different angles at their situation. I just think with all the pain you’re in, that there’s gotta be something that could help you and be safe enough as well. God Bless
Hi I have neuropathy in my legs and I an unable to walk there is not a lot
that the Doctors can do for me the damage is done there is not a lot of
treatments for neuropathy out here. There need to be I hope that you get
to feeling better.
I'm so sorry to here about your ongoing pain issues...At month four post tx, i had a sudden onset of my joints just killing me and unexplained gut cramping and diarrhea...I had only experienced this before when my calcium and B-12 levels were in the toilet. (I'd been neglecting the supplements for about a month or so at that point...) Treatment aggravated a low intrinsic factor (low vitamin B absorption) that I'd had minor issues with in the past and, when I started taking the supplements again, "poofers", pain's gone and tummy troubles straightened out...I haven't had rheumatiod arthritis, so I can't say if this would help in your situation...(((((((((((((((HUGZ))))))))))))))) ~Melinda
funny you mention that - I had started taking the B complex a few weeks ago and have really noticed a positive change. The consorta is really helping...more then the lyrica. The consorta is for the fatigue and keeps me moving which really helps the legs.
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