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Mikkimoe needs your help again..
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Mikkimoe needs your help again..

hi...been pretty downhill here as you know...stopped tx on 4th of july....RA flare is pretty much off the charts ..mega mega pain.

So here is the delema...will speak with rhumy tomorrow about next steps....hate to up the prednisone, but that is usually first line to try to stop it (lots of it)..I am on anti-inflams-relafin and clinerol...no help). the enbrel that has worked for the last 5 yrs pretty well (TNF Blocker) seems to make the RA much worse since week 7 of tx. I may be able to try something totally different  - Ritaxin -Bcell blocker...but am having a very hard time researching...this has taken 20 minutes just to type this far.

So does anyone know how to turn off an RA flare that is out of control without totally jepardizing getting the HCV back (been und since week 3.5...stopped tx week 13 G2B)...or sould I just not worry about the virus  and do what it takes to stop the deformaties?

RA flare overview (but in the 14 yrs of flares i have never had one this bad...50% of joints..pain meds every few hrs..bed ridden)

THE INFLAMMATORY PROCESS (RA Flare)

Rheumatoid or rheumatism refers to a category of diseases causing inflammation, stiffness, and pain in joints and supporting structures. Arthritis is the involvement of the joints and immediate surrounding structures by disease characterized by inflammation, pain, and swelling, often resulting in crippling deformities.

One of the most easily recognized signs of rheumatoid arthritis are joint inflammation. The word inflammation means to set on fire and describes the reaction of tissue to injury. Reddening, swelling, pain, and heat are common manifestations of inflammation. Reddening results from the increased blood flow to the area. White blood cells (lymphocytes) are sent by the immune system to destroy the foreign invaders and to break down and remove dead and damaged tissue. The synovial membrane (joint lining) increases its production of fluid, causing swelling. Pain is the body’s warning to protect the injured area and draws attention to the need to do something about it. The heat comes from increased metabolism in the area.

There are two phases of joint inflammation: the exudative, and the chronic. The exudative phase involves the lining layer and synovial effusion. Cartilage can become damaged during this phase.  In the second phase, the inflammation moves into the sublining layer. In this stage, infiltrates that are present are said [by some] to be resulting from a cellular immune response to an antigen.   A commitment to future research in RA will be a continued attempt to identify a possible infectious agent as the inciting antigen in this disease. It is in the second phase that the permanent tissue destruction occurs.

Extensive research has allowed scientists to better understand the enzymes that are released during inflammation. These enzymes, normally stored in little packages or sacs inside the white blood cells, are called lysosomes. Normally, release of these enzymes would help cells to digest invading bacteria, viruses or other foreign material during the body's fight against the invading agents. In rheumatic diseases, however, these enzymes often spill out of the white blood cells into surrounding tissues where they can digest cartilage, bone, protein, ligaments, muscles or other tissues. The enzyme collagenase is particularly damaging, because it breaks down collagen, a vital part of the normal joint. Researchers have shown that all of these chemical substances are present in inflamed joints. Rheumatoid arthritis can be variable in its course. An increase in disease activity, called a flare, can be characterized by a return or an increase in inflammation. A flare can last for days, weeks, or months.

from http://www.roadback.org/index.cfm/fuseaction/education.display/display_id/90.html (btw - the antibiotics did not work for me)

thanks...mikkimoe
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17 Comments Post a Comment
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406107_tn?1219016200
Wow Darlin',  I'm soooooo sorry that your RA Flares are kickin your 'tiny hiney'.  I wish I had some magic wand to wave over you and my brother-in-law,(also w/ RA).  He uses a power chair now.  His immune system is GONE,(Addisons Disease).  All I really know about RA, is how it has ravaged my brothers body.  I know that the pain is excrutiating, and it becomes a toss up as to whether one wishes to suffer some pain, or 'nod out' on pain meds all day.  I know that it becomes a balancing act between manageable pain, and being aware and awake, and communicable.  My vote would be to deal with the RA, (as best you can), and not to concern yourself with SVR.  I would imagine that your Rheumatologist, and Hepatologist, would put their heads together and make a joint decision as to what your next moves should be.  Interimly,(is that a real word?), I'll continue to pray for your comfort, and UND/SVR.  Lots and lots o' hugs to you from Grandma B.
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394687_tn?1290924440
Sorry - I misspelled the drug I'm trying to research from above...it's RITUXAN...i'll also try to post in the arthritis forum but not sure anyone researches there.

Hi Bevy - yep things pretty much suck right now...thanks for the prayers - how are you doing?

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406107_tn?1219016200
I'm having sx from the devils door.  YET, Am sooooo happy. Baby Katie Lee is here!!!!Healthy and Happy, both Mommy and Baby doing great.  Oh, my son is in Daddy bliss, right now.  He even admitted that he shed a few happy tears.   I thank God for our healthy baby and an uncomplicated birth, for our Kelly.  We are truly blessed.  Many hugs, Michelle,   Grandma Bevy
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408795_tn?1324939275
I found a couple of items on pubmed, I'm sure there's alot more on clinicaloptions.com.  So sorry that you are in such terrible pain, when I typed in Rituxan the whole form of the word came out, but it's one and the same.  Take care I hope you get better really soon.  Maybe someone who knows something about the RA usage of this drug will chime in here.   God Bless

Rituximab off label use for difficult-to-treat auto-immune diseases: reappraisal of benefits and risks.

Sailler L.
Service de Pharmacologie Clinique, Unité de Pharmacoépidémiologie, CHU de Toulouse, IFR INSERM 126, EA3696, Toulouse, France, sailler.l@chu-toulouse.fr.

Rituximab is increasingly used off label for difficult-to-treat auto-immune diseases. We reviewed the main case series or clinical studies to identify the best indications of rituximab and the situations at substantial risks for adverse events. Refractory immune thrombocytopenic purpura was the main indication. However, the long term benefit-to-risk ratio of rituximab treatment before or after splenectomy is unknown. A single 375 mg/m(2) infusion may be as efficacious as the classical four infusions cycle. Rituximab is the best treatment for cold agglutinin disease. In warm agglutinin auto-immune anaemia, its efficacy has essentially been reported in chronic lymphocytic leukemia (CLL) patients and in children. In CLL patients, lethal adverse events occurred in patients also receiving cyclophosphamide. Rituximab seems to have an interesting benefit-to-risk ratio in Wegener granulomatosis (excepted in granulomatous lesions), HCV-associated symptomatic cryoglobulinemia in patients unresponsive to anti-viral therapy, pemphigus and thrombotic thrombocytopenic purpura. Efficacy and safety data in lupus are difficult to interpret. Serum sickness disease is not exceptional in immune thrombocytopenic purpura (ITP), lupus and sicca syndrome patients. A substantial infectious risk has been reported in pemphigus patients and in post-renal transplant cryoglobulinemia. Double-blind randomised controlled trials and phase IV studies are mandatory in most clinical settings to confirm the overall favourable perception of rituximab benefit to risk ratio.

HCV infection: pathogenesis, clinical manifestations and therapy.
1. University of Pisa School of Medicine, Pisa, Italy.
Chronic hepatitis C virus (HCV) infection is a worldwide public health problem with a global prevalence of 2-3%. It is believed that about 170 million people are currently infected (about 3% of the world's population), and a further 3-4 million are infected each year. HCV is the main reason for liver transplantation in the developed world, and the main cause of liver-related morbidity and mortality in a number of countries, including Italy. It is not only a frequent cause of chronic liver diseases such as hepatitis, cirrhosis and hepatocellular carcinoma, but is also involved in the pathogenesis of various autoimmune and rheumatic disorders (arthritis, vasculitis, sicca syndrome, porphyria cutanea tarda, lichen planus, nephropathies, thyroid diseases, and lung fibrosis), as well as in the development of B-cell lymphoproliferative diseases. Furthermore, patients suffering from C hepatitis tend to produce rheumatoid factor, cryoglobulins and a large series of autoantibodies (ANA, anti-SSA/SSB, SAM, ATG, aCL). The use of glucocorticoids or immuno-suppressant agents in HCV infected individuals, which are needed to treat autoimmune and rheumatic disorders, leads to a risk of worsening the clinical outcome of HCV. Under these conditions, the viral infection often needs to be treated with antiviral agents, mainly pegylated interferon combined with ribavirin. However, cyclosporine A seems to be safe and effective in patients with autoimmune disease (AD) and concomitant chronic HCV infection as is documented by the reduction in viremia and transaminases, particularly in patients with high baseline levels. Finally, HCV is the main trigger of mixed cryoglobulinemia. An attempt at viral eradication is therefore indicated in most patients, and is particularly effective in the case of mild or moderate manifestations. In severe cases, rituximab is an apparently safe and effective alternative to conventional immunosuppression and, specifically, it controls B-cell proliferation.

http://ncbi.nlm.nih.gov/pubmed/

http://clinicaloptions.com/
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Avatar_f_tn
I am with Wassup, take care of your pain,  SVR will or will not come. But RA is a life long  problem.

Gee what a  couple of choices, deformed joints or a bad liver.  

No one in this day and age should be in this kind of pain,    

Hugs

Deb
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(((((((((((((((((((((((HUGZ))))))))))))))))))))   Hang in there, sweetie...      ~Melinda
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412832_tn?1219078945
Hi !

What about asking Dr. Dieterich in the "Hepatitis C Expert Forum" for his advice?  He seems very knowledgable and is always helpful...

pK
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394687_tn?1290924440
Bevy - congrats grandma....pictures please...

Fret - thanks those are good articles. I did read hat you can't do it with HepB or with HepC if you also have Lymphomia.

I've tried every other RA drug out there in the past 14 yrs (39 of them - no relief except Enbrel which stopped working) so this really is my last resort if the Rhumy agrees...she wants me to take 30 mg of prednisone a day to try to get this under control....I took 20mg yesterday..made me a nervous wreck but did help the pain. I really hate risking getting the HCV back after all I've been through..my Hepta said 10 mg is OK...so maybe I'll just stick in between with 20 and see what happens until I can get something else going.

PK - good idea - have not been here but will check it out - thanks

medi - Deb    feelin the <<<<<<<>>>>>>>>>>> thanks
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163305_tn?1333672171
I remember a guy in S.F. who had to stop after 7 weeks and he is SVR.

My only advice is to go sniff the horses and let them help you feel better.
Good luck.           OH
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Mikki, I know diddly squat about this, all I know is I'm rooting for you and have to believe this will all turn out okay.

Meki asked a question about prednisone on the other side and I don't know if you saw it..so posting it for you cause I think some of the responses will make you feel better and might help.

http://www.medhelp.org/posts/show/560223

Gotta admit...kind of glad you're done tx.

Take care...and hang in there.

Trish
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408795_tn?1324939275
Very scary drug, I guess that's why you're asking about it.  I hope this link works, here's part of the article.  take care

http://uk.reuters.com/article/hotStocksNewsUS/idUKN0742002120080707

WASHINGTON (Reuters) - Shares of Genentech Inc (DNA.N: Quote, Profile, Research) fell nearly 3 percent on Monday amid renewed concerns about the incidence of a potentially deadly brain disease in patients treated with its drug Rituxan, according to Wall Street analysts.
Last month, a rheumatoid arthritis patient being treated with Rituxan died after developing progressive multifocal leukoencephalopathy, a central nervous system disorder also known as PML, said a spokeswoman for Biogen Idec Inc (BIIB.O: Quote, Profile, Research), which co-markets Rituxan in the United States with Genentech.
The drug's label already contains a warning about the risk of PML, but this may have been the first fatal case in an arthritis patient, according to Biogen's Naomi Aoki.
She also said the patient had a number of complicating conditions making it difficult to assess whether Rituxan played a role in the death.
Rituxan, originally developed as a treatment for non-Hodgkin's lymphoma, was also approved in 2006 for treating rheumatoid arthritis.
"There have been cases in lupus, lymphoma, and leukemia patients. It is no surprise that it happened with an RA patient," said Sanford Bernstein analyst Geoffrey Porges.
He said the risk was "well-known" and should be of little concern to investors at this stage.
Deutsche Bank analyst Mark Schoenebaum also described the market's reaction as overblown.
"PML is a KNOWN side effect of Rituxan and is already described in the FDA (Food and Drug Administration) label," he said in a research note on Monday. Continued...
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394687_tn?1290924440
YIKES - yep from one killer drug to the next huh? What am I doing?

I'm so glad you posted that  - I must really be getting desperate - pain does that! - (and it's also 15,000 per tx) - I was just researching back to some of my old home remedies when some wonderful person who has been watching this board forever (but not posting) reminded me of what works so great for her very progressive RA (Fish and olive oil) Well duh - I had been on that flax oil thing I use to post about (budwig flax oil diet) and was doing good until week 7 when the IBS got so bad from the tx that I stopped - well pretty funny but that's when my RA started to get real bad and now it's off the charts....I actually had an urge to drink the olive oil I put in my bath this morning - so must be craving it...I'm so brain dead I didn't even realize I had stopped it....so a new ray of hope...now that I'm off tx maybe my tummy will let me tolerate it again.....I'm so damn wired from this prednisone that I feel like I'm coming outta my skin....I have to get my act together and think about what I'm doing...thanks all of you for keeping me on track...going to go make my cocktail right now.

Oh here is what she posted to me:
1: Nutrition. 2005 Feb;21(2):131-6. Links
Supplementation of fish oil and olive oil in patients with rheumatoid arthritis.Berbert AA, Kondo CR, Almendra CL, Matsuo T, Dichi I.
Department of Department of Pathology, Londrina State University, Paraná, Brazil.

OBJECTIVE: This study evaluated whether supplementation with olive oil could improve clinical and laboratory parameters of disease activity in patients who had rheumatoid arthritis and were using fish oil supplements. METHODS: Forty-three patients (34 female, 9 male; mean age = 49 +/- 19y) were investigated in a parallel randomized design. Patients were assigned to one of three groups. In addition to their usual medication, the first group (G1) received placebo (soy oil), the second group (G2) received fish oil omega-3 fatty acids (3 g/d), and the third group (G3) received fish oil omega-3 fatty acids (3 g/d) and 9.6 mL of olive oil. Disease activity was measured by clinical and laboratory indicators at the beginning of the study and after 12 and 24 wk. Patients' satisfaction in activities of daily living was also measured. RESULTS: There was a statistically significant improvement (P < 0.05) in G2 and G3 in relation to G1 with respect to joint pain intensity, right and left handgrip strength after 12 and 24 wk, duration of morning stiffness, onset of fatigue, Ritchie's articular index for pain joints after 24 wk, ability to bend down to pick up clothing from the floor, and getting in and out of a car after 24 wk. G3, but not G2, in relation to G1 showed additional improvements with respect to duration of morning stiffness after 12 wk, patient global assessment after 12 and 24 wk, ability to turn faucets on and off after 24 wk, and rheumatoid factor after 24 wk. In addition, G3 showed a significant improvement in patient global assessment in relation to G2 after 12 wk. CONCLUSIONS: Ingestion of fish oil omega-3 fatty acids relieved several clinical parameters used in the present study. However, patients showed a more precocious and accentuated improvement when fish oil supplements were used in combination with olive oil.

Thanks...mikmo
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394687_tn?1290924440
YIKES - yep from one killer drug to the next huh? What am I doing?

I'm so glad you posted that - I must really be getting desperate - pain does that! - (and it's also 15,000 per tx) - I was just researching back to some of my old home remedies when some wonderful person who has been watching this board forever (but not posting) reminded me of what works so great for her very progressive RA (Fish and olive oil) Well duh - I had been on that flax oil thing I use to post about (budwig flax oil diet) and was doing good until week 7 when the IBS got so bad from the tx that I stopped - well pretty funny but that's when my RA started to get real bad and now it's off the charts....I actually had an urge to drink the olive oil I put in my bath this morning - so must be craving it...I'm so brain dead I didn't even realize I had stopped it....so a new ray of hope...now that I'm off tx maybe my tummy will let me tolerate it again.....I'm so damn wired from this prednisone that I feel like I'm coming outta my skin....I have to get my act together and think about what I'm doing...thanks all of you for keeping me on track...going to go make my cocktail right now.

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394687_tn?1290924440
excuse my brain or lack there of....
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338734_tn?1377163768
Just want you to know I am so sorry about the pain you have to endure. I am certain that that kind of pain would drive anyone to desperate measures. I know nothing about RA, so I hope the diet change will help. I echo the advice to ask Dr. D about this.

God bless,
Brent
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217229_tn?1192766004
Mikki - I don't know what you can do...

There might be alternative meds out there that the doctor can prescribe.

But you've been on Prednisones for so very long.

SO - I'm going to put in an extra warm thought for you - because I don't know the answer - But I believe in YOUR Strength.

Meki
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prayers, jerry
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