July 4th - 2009 - Independance day has a whole new meaning - I am finally independant of that God Aweful monster that was consumming my life - I am free - I am SVR - 1 year from the final treatment (the odds were so low with just 13 weeks treatment)....there really isn't a more perfect feeling in the world. I believe that now I can die and go to heaven...heavens gates have opened for me. The wrathes of hell are behind me. No matter how hard your journey may be, how bleek, how desperate....please believe that this day will come...thank God and everyone and celebrate...celebrate....celebrate. Every moment is so preasious now...if there were ever a justification for the pain and suffering it would be this realization....Celebrate every moment of every day - like it were your last. Live - Love - Laugh - and Leave a Legacy.
February 10, 2009 - OMG - I can't freaking believe it - yep SVR - I was feeling pretty bad and it had been 5 months since I had my 2 mo post PCR which was clear and I knew I could not treat again due to the awful side effects and I just didn't want to know - but I finally gave in and tested and just found out I'm SVR. I had only treated for 13 weeks (am a 2b) and most of it was at very reduced doses - so it's pretty much a miracle - I have my life back - wow...now just dealing with the sides - but with a new light!
November 21, 2008 - gee can't believe it's been 2 months since I've posted....have to blame it on these darn post tx chronic fatigue symptoms...I'd almost rather the Ribba - at least I could stay up to post once in a while. It's been a bad post experience for me - so many chronic illnesses - the fibro with the leg pain and now the horrible fatigue..guess since my chryoglobins are negative it isn't true CFS but it sure is a close cousin. My doc finally gave me Consorta and I have gotten some relief. It's been 4 months post and I'm real ready to "be all better" I have not gotten another PCR - I'd rather wait till after the holidays. The Lyrica is helping with pain but hate the stupid feeling it gives me - trying to wean off of it. Still taking soma at night for pain and sleep as well as lorazipam. Darvacette during the day as needed and prednisone. Someday I'll have to get rehab to get off all this stuff - ugh
Sept 24, 2008 (8 weeks post tx) - Just got my second Rituxan infusion - major flu symptoms...kinda reminds me of the first Peg night...but I should feel better in about a week if this stuff is going to work (Ideally I should feel better due to the steroid infusion they also gave me...I get about a week of relief with any steroid injection.) I can even drive sometimes - Whoopi. Don't want to think it won't work so maybe the placebo effect will hold me for a while.....Saw a new Neurologist yesterday for the neuropathy and stabbing back pains - he gave me Lyrica (I'll wait a while before trying due to the Rituxan and he ordered a spinal MRI and lot's of strange blood tests). Just so happy no more peg and riba and keep holding that SVR dream. Still on the alkaline diet - its helping with the IBS - getting deionized water from trader Joes lots of organic food - no meat - Ideal Protein foods, lots of great supplements etc. Gained a few pounds back had gone down to 100 lbs- am back to 106 lbs. Still on Soma at night and Lorazipam - then Darvocette at 3 am when I wake from pain. Steroids as needed during the day...ugh can’t wait to wean off them
Sept 11, 2008 - Remembering 911...well got my first Rituxan infusion today (B-cell blocker). 7 hrs of drip and lots of nausea and IBS - but feel better now except the tummy and the leg neuropathy - seeing a neurologist in a few weeks.
I did get 2 more super combo injections (crystal steroids) last week in my hips (love my orthopod) - sure takes the RA pain away everywhere for at least 7 days - great fun to be normal for a few days (cept the neuropathy-doesn't stop that completely) So they give the RA folks 2 1/2 times the dose of Rituxan that they give the Lymphoma patients and no weight based. I've gained about 5 lbs back since stopping tx 2 months ago and am still UND - Yippy
August 21st - good news 4 wk post pcr was clear - still fighting to get on Rituxan - Rhumy wants hepta to verify OK to take. No good info out there so the bottom line is if I stay clear then I can take it and may be pain free in 3 weeks but if there is even one little viral cell out there it could multiply and return.....Got a two day relief from pain from my fabulous Orthopod (Dr. Mayo) a 3 way cocktail in shoulders and neck....virtually took all my pain away for 4 days - was awesome!!!!! But back to the lock up this morning - ugh. But there may be long term relief in the injection sites. Glad my brain is starting to work again - had a good friend visit from Tx - was great fun.
August 6, 2008 - Still in a ton of pain...seems like instead of my usual RA morning stiffness - I have morning lock up and can't move for hours. Wake with pain 3 times a night - Soma helps some. I am pretty darn miserable from late evening to about 2 pm the next afternoon then I start loosening up and can go to the ranch in the evening and ride my horses (can barely walk but can ride - funny). I am trying different antinflams - none seem to help. Have the prednisone up to 7 to 10 per day. Taking Darvecete up to 4 times a day. Good news is my been on an alkaline diet and am getting much better energy wise - tummy is much better and so are headaches.. Still taking the Enbrel but it does not seem to help anymore - looking into next steps - Rituxan a B-cell modifier but unfortunately it has a history of bringing Hep B virus back so they are not sure about Hep C (would like to stay clear) So may try Humeria the other biogenetic. Am also looking into various pain management (Bio-feedback, hypnosis, massage) UGH
Took my 4 wk post tx PCR - waiting results - praying still clear.
July 24th, 2008 - I finally started feeling better a few days ago after finally ending up in the ER with dehydration, severe pain, severe migrain, and an intestinal virus. They put me on Morphine and IV fluids all day - felt allot better the next day and the day after that - even rode my horse - yippy - but today the pain is back - not the migraine or virus though - so did an Enbrel shot - been a few weeks since the last one -hope to get a better reaction this time. We think I may have developed Fibromyalgia. I seem to have most of the pressure points and lots of muscle and tendon pain - all over - on top of the joint pain - some fun huh. Had actually went off my pain meds after the ER trip for 2 days but am back on them (Darvocette and soma and steroids). The Relafen anti-inflam does not appear to help much. Went on an alkaline diet to try to get the IBS and pain under control. Stopped the norflex and the zoloft last week. Am down to 7.5 prednisone per day. Can walk a little ways now but not far, but that's OK if I can ride my horse - so am better as far as dizzy and balance goes. Took 3 weeks after stopping tx for my brain to clear and get my energy back....now what to do about the pain.
July 8th, 2008 - Stopped tx on 4th of July (13 weeks in) - extreme RA flare in most joints - My Rheumy is going to dose pack the prednisone and see if it helps - We may also start Rituxan (A biogenetic B-cell blocker that is an infusion). There are risks with this drug but I have no other alternatives as the Enbrel has stopped working and I have tried all the other RA meds with no relief. I will try the Enbrel one more time tomorrow night and pray it doesn't floor me again - as I am already bed ridden. There is a box warning about virus infection re-occurrence in Rituxan but no contraindication. I need to research this - My Rheumy needs approval from my Hepatologist in order to start it.
July 3rd, 2008 (week 13) - Well I stayed off the Enbrel for 2 weeks and had a very slight improvement then this last Monday took just one Enbrel shot (instead of 2) and 95 mg of Peg at the same time - results were not good - mega autoimmune syndrome - pain in most all large joints and some small. knees and shoulders are the worse. Went to Dr Hoefs 2 days ago and he confirmed the extreme inflammation and suggested we stop tx. I may squeak in a small titrate down dose this Monday depending on how I feel. Pretty disappointed that I can't make it to 16 weeks but am also very concerned about permanent joint damage. The pain is relentless - taking pain meds every 2-3 hrs - He does give me a 70% chance of SVR though due to my EVR (early viral response at 3 weeks UND). So will keep you posted.
Was uplifted that a friend on this board just got UND results 3 months post of just a 9 week tx...she was also a 2B that had to stop due to complications. I still believe I was SVR at week 7 when my joints started to get attacked...would be interesting to do a study of RA/HCV patients that stop tx at the same time their RA begins to flare during tx and see if they all SVR.
In the last 2 weeks upped the prednisone to 10 mg per day - added Relafen antinflamitory - also still taking small doses of Clinerol anti-inflam. Darvocette and Soma for pain. Lorazipam to sleep - still 1/2 zoloft at night and usually 1/2 xanax at some point in the day. Taking atenenol very small dose for the heart palpitations - seems to be helping.
Still on most supplements although IBS is getting bad so cutting back on some. Eating mostly yogurt - still no appetite. Also veggies from my garden and protein drinks, Gatorade and Sobe green tea.
Threads to watch -
it has some great stories in it!! I want to research the doctor who made his RVR 2bs stop at 12 weeks.
Also, here is the article that gives really good odds for being UND at 3 months and getting SVR or cured:
June 23rd, 2008 - Just took shot # 11 - whoopi only 4 more left. I almost stopped tx last week unbelievable RA pain (the dreaded autoimmune syndrome) It seems to really kick in gear the days after the Enbrel injections...many joints involved (shoulders, knees, ankles, hands, fingers, feet...taking too many drugs to try to deal with the pain) Spoke with both docs. We agreed to stop the Enbrel for a while and see if I get any relief and go clear down to 90 on the peg and take a tad more off the Riba. It seems to be helping....joints still very sore but much more energy and less brain fog. Not sure how long I'll stay off the Enbrel - going day to day at this point.
June 12th - 2008 - Went back down to 135mg on my 9th and 10th Peg shot - also am pretty much at just 600 mg of Riba every day. Dr. Hoefs acknowledged my severe symptoms and we confirmed they were Peg related and not Anemia. He said if I wanted I could go down to 90mg and it would still work. But I’d rather be safe than sorry - even if the RA pain is getting unbearable. Having to take Darvacette everyday and have upped the prednisone to 7.5. Also my Rheumatologist added an anti-inflammatory (Relafen). Am pretty much bed ridden or in the wheelchair or my golf cart. Knees and hands are real bad. Still out of breath - dizzy etc. My lips really swelled this week and cracked - used everything but seems it helped to use yeast treatment (Monistat) a few times. The days after Enbrel are worse than the days after Peg. My RA really seems to flare. Both cause Migraines as well. Been taking a combination of 1/2 maxalt and 1/2 Zomig to handle them. We think I will only do 16 weeks of tx.
May 30th - 2008- Took my 8th shot - tried to go back up a bit to 150 - horrible week...saw the Dr. Hoefs he said to cut it back because of my extreme symptoms. Said 90 would be OK - but according to the 80-80 principle I should cut it to 145 and the riba is OK at 600 (13g times my weight in kg -45 equals about 600). I had a couple episodes of the chronic autoimmune syndrome and we are very concerned that it could happen again but next time possibly permanently. I could not move for almost 8 hours - unbelievable pain in most joints - had to wrap my hands in gauze like hooks to drink - fingers would not work. Then 8 hours after it started - it just stopped - way to weird. So maybe I will go down to 120 - he is leaving it to me but advises low doses - he said 90 would still have antiviral effects. I have to be in a wheelchair if I have to walk anywhere further than 20 feet. Get very winded and seem to forget to breathe - then hyperventilate. All symptoms are worse after the Enbrel shots including my joints - started taking anti-inflammatory. Will see Rheumy next week - my labs are just barely OK but I may have RA anemia in my bone marrow, need to do some tests.
May 20th, 2008 (7 weeks in) - Been a real rough road - VERY sick...back to back killer migraines, can hardly eat for mouth sores and nausea - can't stand without getting faint and dizzy - pretty much bed ridden until 2 days ago and started feeling better - Had cut my Peg to 135 on shot # 6 and started taking 600 riba instead of 800 - 1 pill at breakfast - 1 at lunch - 1 dinner. Every other day an extra 1/2 of the ribasphere (the blue ones that break in half) - so 600 one day 700 the next. Shot # 7 was 140 peg (not 180) and decreased the Enbrel a smidge. The RA is not brutal because I don't move enough to get sore. My heart palpitations are better - started taking atenenol - 25 mg (1/2) Still taking 1/2 Zoloft and full lorazipam at bed - sometimes 1/2 soma if pain. My glands in my throat and neck are very swollen. Getting another lab Friday - doc next week.. Sores on my legs, ankles - resemble mosqueto bites - but different...wake up scratching like crazy. Doing meditation tapes to help with deep breathing, drinking lots of Gatorade - like the berry rain, Started taking reversotol and stress vitamins (gee that’s when I started feeling better 3 days ago)
plus my regiment (acidopolus, glyco gold, B-C, Biotin, Q-10, Mercette BC pills, prilosec, prednisone -5mg, inulin, soy/spirolina drinks, l-caratin, flax oil - (taking zomig plus maxalt to manage the killer migrains - barely touches them - lot's of ice paks and a dark room.) Fighting with Medco on meds as usual...incompetent people should not be employed - they should be tucked in bed like me.
May 9th, 2008 - Good news and bad - my 4 wk (actually 3.5 wk) PCR was clear - UND. Which is great because I am having a very rough time with the sx. My up time is very limited - I get very dizzy if I stand or walk. have chest pressure and palpitations, shortness of breath - called my doc got a blood test to rule out Hemo drop - it is lower but only 12 - he thinks it is a combination of dehydration and possibly to much Peg due to also taking Enbrel - we may decrease it a bit if I still feel this bad on Sunday. Seems the Enbrel is kind of like a booster shot for the Peg - I am flat out on the days after both. Still have cough and mouth sores. Dr. called in a combo of Benadryl, Maalox and Lidacayn for the mouth sores – but my heart raced due to the lidacayn. Bad tinnitus - vision very poor - eyes very dry - can't use makeup.
May 2, 2008 - Took my 4 week PCR this week - found out my 2 week PCR was clear down to 203 - Whoopi!
So here is what Dr and I are tracking when I take my Enbrel shots (A Biogenetic TNF blocker for RA) that my viral load is always lower the day after the shot and higher the day before. (I thought Enbrel would weaken the immune system but guess not). I am charting this per the trial that stated Enbrel may be a good 3rd component - Better SVR and lower sx (although my sx are pretty bad).
Here's what I have so far - S/B UND now just waiting on the results from last week’s PCR although it was the day before Enbrel - so we'll see.
Jan 25-08 - 41,540 after Enbrel
Feb 6-08 - 3,730,000 before Enbrel
Feb 26-08 - 677,000 after Enbrel
Mar 27-08 - 2,240,000 before Enbrel Started tx April 5th
April 17-08 - 203 after Enbrel
April 29th - probably UND - waiting results - but day before Enbrel
Still having real bad days right after shots (Sundays-Peg and Wed-Enbrel) Mouth sores now - Rash not bad - hair thinning - head ache a bit better - fatigue and muscle ache worse - RA not bad - mood swings starting to be common. Sleeping with Lorazipam and sometimes a 1/2 Soma. Worst side now is loud Tinnitus.
April 23rd, 2008 - Well it's Wed again and my 2 wk labs were pretty good Hem was @13.1 White had dropped 2 points. But the Alt was amazing 37 down from 124 - in normal range for the first time in over a year. Still waiting on VL. My scalp really itches (started using Jojoba oil on it and Nexium). Energy *****, still have the headaches but not as bad since I started the clyco nutrients, Mega Vit C and flax/cottage cheese blend as well as supplements. My RA pain has subsided as well. I have discontinued my anti-inflams as well as pain meds and prilosec and Anti-D's. This Glyco Gold etc. seems to be kicking in - get 4 week PCR next week be interesting to see.
April 16th, 2008 - This is Wed and I'm still pretty out of it from my Sunday shot. Energy is fading way too fast. get winded just going up and down my stairs. Headache persists - no serious joint pain though. Will see the doc tomorrow and check the Hemo. They lost my lab from last Friday - just wonderful, the most important one. And of course that was the first time that had ever happened.
April 11, 2008 - I now have a site reaction - large red welt - some rash and itching on my back. Still extreme fatigue. Took Enbrel shots last night - today feel pretty bad - extreme fatigue, head ache, lots of palpitations. Eyes are red, dry and sore. Can't do anything physical without getting out of breath. Took my one week PCR today.
April 7, 2008 - took Peg at about 10pm no site reaction. Took a lorazipam - sleep for a while 12 to 4 then major migraine. Took Zomig - little help - was in bed all day chills, body aches - total fatigue - mega headache. Have a cough am sleeping with a vaporizer tonight - if I sleep...I just have to keep remembering that it's good to have symptoms - the body is working hard to kill the dragon. Also noticed on my last lab I may have iron deficient anemia - have to research tomorrow if I can get past this migraine.
April 5th, 2008 - took my first riba with my oatmeal and protein drink (plus 5 mg prednisone, prilosec, biotin, acidophilus), at 8 am. Took rest of vitamins at lunch. Developed a headache and slight nausea by 3ish - took second dose at dinner 7pm. At 10 PM starting to itch on arms mostly - 2 small bumps on my tummy - oh joy here we go.
April 4th, 2008 - Wow what a day - went to my HCV class at UCI - found I knew 10 times more than them - thanks to the forums...the instructor even gave me her email so I could send her my research articles. Then in the PM held a silent auction for my friend who lost her mare and foal last week. It went great and we made a lot of money for her to help with the bills. But boy am I spent. Start Riba in the morning - got some good info about preloading but will only do it for a few days due to schedules being tight (My sis flying out to be with me). I am back to my awful sleep patterns - to sleep at 1am - awake at always 4:45 am - so weird always the same time hmmm.
April 2, 2008 - Got my meds - Pegasus 180 plus Riba weight based 800 p/d. Got through local pharmacy - mail order will take 2 more weeks - no pre- auth needed with United Health POS. Weighed in at 106 lbs 5' 6".
Got all the body goodies..Gold bond and avino anti itch - Oatmeal bath - eye and nose drops (tears and Ayr Saline nasal jel) Lots of water
April 1, 2008 - I'm finally done researching and testing (Including liver biopsy, liver scan, 2 echoes, a 30 day heart monitor, Thyroid and Diabetes tests, Mammogram, pap, dental clean and caps, parasite exam, Hep A and B shots, 3 Viral Loads 43,000 - 3,780,000, 680,000 and the baseline 2,250,000 all 3 weeks apart. Face cancer removed, eye exam etc. Have been cleared by all 10 docs. Also got a second opinion for Dr poordad - Hepa @ Cedars.