Guest guest Posted June 10, 2004 Report Share Posted June 10, 2004 Welcome to the group, Dana! Congratulations on being sober for five years. HCV + rheumatoid arthritis (RA) is a tricky diagnosis. It can and does happen, but, often, hepatitis C is associated with an inflammatory arthritis that looks and awful lot like RA, but isn't RA. Also, interferon therapy can induce RA-like symptoms. Many patients with hepatitis C (but not with RA) are RF-positive. Have you had any x-rays done of your joints? HCV Advocate " Extrahepatic Manifestations of Hepatitis C " : http://www.hcvadvocate.org/hcsp/articles/Bonkovsky-2.html (see the " Rheumatologic and Autoimmune Manifestations " section) I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] Hi, I am new to the site > Hiya, everyone > > My name is Dana and I live in Orange County, CA. > > I frankly need some people of my own kind to commiserate with. My > sponser in AA, I am 5 years sober, Yeaa!, has RA. So, she > understands, and also suggested I find a support group. So far no > luck in finding a physical one, but boy am I grateful to have found > this! > > I used to belong to a similar one for Hep-C which I also deal with. > or try to. I found a monthly group in my area to go to r that. > > Due to my disinigrating liver, we are not going to be using any of > the RA medications, which will, according to my doc and Ginny > (sponsor really make me sick anyway, and with the liver deal, I for > sure would not be able to work. Oh, and yeah, I went on the > interferon tx, and it did not touch it. Hopefully something new will > come along, because my doc says I am not allowed to do any more > interferon tx. This really is another subject, but I figured I would > clarify my position on not going on RA meds. > > Like I am sure alot of you do, I work full time. With my current > brain fog quotient, It is a real hard day most of the time. I am > currently doing the shoulder joint pain the worst, and my hips, too. > I have a normal sed rate (3) as of yet, however the labs say my > Rhuematiod Factor Quantitative is (high) at 32, and I have a high > level of monocytes, too, coming in at 1.1. > > I know nothing about these readings...I have not taken the > opportunity to sit with my doc and go over these. I am posting all > the lab stuff cuz I wondered if anyone could tell me what they are > feeling, and if they have similar readings. > > Whew...I must tell you all that it feels better just to be reaching > out. I was just diagnosed in January, and coupled with the hep, I > can say I am not living a normal life at all. I work, get in some AA > meetings, which I remain very active in as I sponsor women and work a > great program, occasionally I even get asked to speak for about 45 > mins. in front of a bunch of ol drunks. I swear, with out this > program, wellbutrin and empirin with codeine, I don't know what would > be going on. > > Well. I have said enough tonigt, gonna hit the sack, it is past my > bedtime (8:15) if anyone can relate. I really look forward to hearing > back from some of you. > > God Bless. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2004 Report Share Posted June 11, 2004 Hi Dana, congrats for surviving alcoholism. It can't have been a small battle and the fact that you did win and continue with AA speaks well for you. I also have a good friend who was just diagnosed with severe liver disease and also cannot take the meds that would help with the RA. She will find out next week what they will be using to treat her RA. You must be a good speaker for them to ask you to speak out to groups. Keep up the good work. Hugs June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2004 Report Share Posted June 11, 2004 Hi Dana, I would like to welcome you to the group. I am so glad to hear that you have been sober for 5 years, that is wonderful news! I'm sorry to hear about your RA diagnose, and then a problem with the RA meds, because of your liver. Let us know what your going to be able to take. hugs Tawny --- In , " dankesheon " <dankesheon@c...> wrote: > Hiya, everyone > > My name is Dana and I live in Orange County, CA. > > I frankly need some people of my own kind to commiserate with. My > sponser in AA, I am 5 years sober, Yeaa!, has RA. So, she > understands, and also suggested I find a support group. So far no > luck in finding a physical one, but boy am I grateful to have found > this! > > I used to belong to a similar one for Hep-C which I also deal with. > or try to. I found a monthly group in my area to go to r that. > > Due to my disinigrating liver, we are not going to be using any of > the RA medications, which will, according to my doc and Ginny > (sponsor really make me sick anyway, and with the liver deal, I for > sure would not be able to work. Oh, and yeah, I went on the > interferon tx, and it did not touch it. Hopefully something new will > come along, because my doc says I am not allowed to do any more > interferon tx. This really is another subject, but I figured I would > clarify my position on not going on RA meds. > > Like I am sure alot of you do, I work full time. With my current > brain fog quotient, It is a real hard day most of the time. I am > currently doing the shoulder joint pain the worst, and my hips, too. > I have a normal sed rate (3) as of yet, however the labs say my > Rhuematiod Factor Quantitative is (high) at 32, and I have a high > level of monocytes, too, coming in at 1.1. > > I know nothing about these readings...I have not taken the > opportunity to sit with my doc and go over these. I am posting all > the lab stuff cuz I wondered if anyone could tell me what they are > feeling, and if they have similar readings. > > Whew...I must tell you all that it feels better just to be reaching > out. I was just diagnosed in January, and coupled with the hep, I > can say I am not living a normal life at all. I work, get in some AA > meetings, which I remain very active in as I sponsor women and work a > great program, occasionally I even get asked to speak for about 45 > mins. in front of a bunch of ol drunks. I swear, with out this > program, wellbutrin and empirin with codeine, I don't know what would > be going on. > > Well. I have said enough tonigt, gonna hit the sack, it is past my > bedtime (8:15) if anyone can relate. I really look forward to hearing > back from some of you. > > God Bless. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2004 Report Share Posted June 11, 2004 Hi, June Thanks so much for the reply. I am eager to hear what they tell your friend. If nothing else, I am in the same boat... I look forward to interacting with you in the future. Would you mind sharing a bit about your take on how you are handling the disease? Thanks, Dana [ ] Hi, I am new to the site Hi Dana, congrats for surviving alcoholism. It can't have been a small battle and the fact that you did win and continue with AA speaks well for you. I also have a good friend who was just diagnosed with severe liver disease and also cannot take the meds that would help with the RA. She will find out next week what they will be using to treat her RA. You must be a good speaker for them to ask you to speak out to groups. Keep up the good work. Hugs June Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 11, 2004 Report Share Posted June 11, 2004 HI, Tawny And thanks for the welcome. So far, there aren't any RA drugs I can take. Thank God for the Empirin codeine. At first, I had trepidation, with my alcoholism and all taking codeine. I have not started the " " feeling I hear about with them, I still take the same dose. They help ALOT. My right shoulder was so bad, I was in tears many days, as well as my right hip, deep inside the buttock. I was sure I was screwed for lack of a better word. So, for now, I am doing well. And I agree with all of you about the positive attitude. I feel ever so much better reading your posts and letting out how I feel. As much as I love my friends, in fact because I love my friends, I hesitate to talk much about this or the hep. I see that they feel awkward, and have put myself in their places and understand completely. Thank you, Thank you, Thank you! XXX-OOO Dana in Good ol so cal [ ] Re: Hi, I am new to the site Hi Dana, I would like to welcome you to the group. I am so glad to hear that you have been sober for 5 years, that is wonderful news! I'm sorry to hear about your RA diagnose, and then a problem with the RA meds, because of your liver. Let us know what your going to be able to take. hugs Tawny > Hiya, everyone > > My name is Dana and I live in Orange County, CA. > > I frankly need some people of my own kind to commiserate with. My > sponser in AA, I am 5 years sober, Yeaa!, has RA. So, she > understands, and also suggested I find a support group. So far no > luck in finding a physical one, but boy am I grateful to have found > this! > > I used to belong to a similar one for Hep-C which I also deal with. > or try to. I found a monthly group in my area to go to r that. > > Due to my disinigrating liver, we are not going to be using any of > the RA medications, which will, according to my doc and Ginny > (sponsor really make me sick anyway, and with the liver deal, I for > sure would not be able to work. Oh, and yeah, I went on the > interferon tx, and it did not touch it. Hopefully something new will > come along, because my doc says I am not allowed to do any more > interferon tx. This really is another subject, but I figured I would > clarify my position on not going on RA meds. > > Like I am sure alot of you do, I work full time. With my current > brain fog quotient, It is a real hard day most of the time. I am > currently doing the shoulder joint pain the worst, and my hips, too. > I have a normal sed rate (3) as of yet, however the labs say my > Rhuematiod Factor Quantitative is (high) at 32, and I have a high > level of monocytes, too, coming in at 1.1. > > I know nothing about these readings...I have not taken the > opportunity to sit with my doc and go over these. I am posting all > the lab stuff cuz I wondered if anyone could tell me what they are > feeling, and if they have similar readings. > > Whew...I must tell you all that it feels better just to be reaching > out. I was just diagnosed in January, and coupled with the hep, I > can say I am not living a normal life at all. I work, get in some AA > meetings, which I remain very active in as I sponsor women and work a > great program, occasionally I even get asked to speak for about 45 > mins. in front of a bunch of ol drunks. I swear, with out this > program, wellbutrin and empirin with codeine, I don't know what would > be going on. > > Well. I have said enough tonigt, gonna hit the sack, it is past my > bedtime (8:15) if anyone can relate. I really look forward to hearing > back from some of you. > > God Bless. Dana Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 12, 2004 Report Share Posted June 12, 2004 Hi Dana, I hope they can find something for you to help stop the progression of the RA. I also have that terrible pain also, it gets to be too much sometimes, but not a lot to do. It is hard for people to understand the way you feel, and your medical problems. That is why it's so wonderful about being in a group who understands. You take care, Tawny > > Hiya, everyone > > > > My name is Dana and I live in Orange County, CA. > > > > I frankly need some people of my own kind to commiserate with. My > > sponser in AA, I am 5 years sober, Yeaa!, has RA. So, she > > understands, and also suggested I find a support group. So far no > > luck in finding a physical one, but boy am I grateful to have found > > this! > > > > I used to belong to a similar one for Hep-C which I also deal with. > > or try to. I found a monthly group in my area to go to r that. > > > > Due to my disinigrating liver, we are not going to be using any of > > the RA medications, which will, according to my doc and Ginny > > (sponsor really make me sick anyway, and with the liver deal, I for > > sure would not be able to work. Oh, and yeah, I went on the > > interferon tx, and it did not touch it. Hopefully something new > will > > come along, because my doc says I am not allowed to do any more > > interferon tx. This really is another subject, but I figured I > would > > clarify my position on not going on RA meds. > > > > Like I am sure alot of you do, I work full time. With my current > > brain fog quotient, It is a real hard day most of the time. I am > > currently doing the shoulder joint pain the worst, and my hips, > too. > > I have a normal sed rate (3) as of yet, however the labs say my > > Rhuematiod Factor Quantitative is (high) at 32, and I have a high > > level of monocytes, too, coming in at 1.1. > > > > I know nothing about these readings...I have not taken the > > opportunity to sit with my doc and go over these. I am posting all > > the lab stuff cuz I wondered if anyone could tell me what they are > > feeling, and if they have similar readings. > > > > Whew...I must tell you all that it feels better just to be reaching > > out. I was just diagnosed in January, and coupled with the hep, I > > can say I am not living a normal life at all. I work, get in some > AA > > meetings, which I remain very active in as I sponsor women and work > a > > great program, occasionally I even get asked to speak for about 45 > > mins. in front of a bunch of ol drunks. I swear, with out this > > program, wellbutrin and empirin with codeine, I don't know what > would > > be going on. > > > > Well. I have said enough tonigt, gonna hit the sack, it is past my > > bedtime (8:15) if anyone can relate. I really look forward to > hearing > > back from some of you. > > > > God Bless. Dana > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Hi Dana, my friend has her appt on Thursday this week and I will certainly let you know how they plan on treating her liver disease. As for how I handle the disease, the key words are " I am in charge of the disease, not the disease in charge. I went through every single thing all of you have experienced and then some. Many times I was at the brink of giving in and just letting the disease pattern my daily life. Taking anti depressants helped a great deal in helping me see all the positive things in my life and when I found Patient Partners in Arthritis, I knew this was something I could do so helping other people with chronic illness (not just RA) became my focus. I try to set realistic goals and develop a plan on how I am going to reach the goal. Everyone has to have a reason for getting out of bed and just knowing I have some med students waiting for me to teach them the MSK exam gives me the impetus to get going. It is much easier to speak out on behalf of others and knowing you will make a difference in the way these new doctors look at a patient with RA, gives great satisfaction. You don't need to be an experienced public speaker, just the passion you feel about bringing awareness of what is needed in the way of health care, is all that is needed. Get your own story out there to the people that are in a position to make changes to the health care system. Let them know what you have to do every day, take them through a day as you live it. Always remember, it is difficult when you have a disease where most of the time you look great, for other people to understand including your care givers, what it is like to live with chronic pain. Hugs June Re: [ ] Hi, I am new to the site Hi, June Thanks so much for the reply. I am eager to hear what they tell your friend. If nothing else, I am in the same boat... I look forward to interacting with you in the future. Would you mind sharing a bit about your take on how you are handling the disease? Thanks, Dana ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 14, 2004 Report Share Posted June 14, 2004 Hi, June I am intrigued regarding the Patient Partners, at least for a look see. I actually am an AA advocate, (I use the term for educational purposes, for lack of a better word, we don't have AA advocates, per se) those of us who want to stay sober are, so I go to several meetings a week, either at lunch, or after work and on weekends. Sometimes, I get the great honor of being asked to speak my experience, strength and hope. We usually go about 45 mins. And what happens is just how you describe...It is a full circle experience, all who are present benefit. But, how cool to go out an do the thing you do. I have alot of respect for that. Gratefully, my sobriety found me spirituality. Everything in my life gets turned over to God. I am lucky, because when a question arises, I get my answer. So, when I was looking for others to talk to about the RA, I was given the answer, find a group. I am not feeling desperate or fearful, far from it. I hope, with one day at a time, I can keep it up. I just loved the idea of not only sharing the frustrations and solutions of everyday life with RA, but having contact with some others, like your self, that live it each day and are not bowed down by it. As for going through hell, well, lets just say, until 5 years ago, I was living it. Drugs, alcohol, hopelessness, self hatred, inability to care for self or love anyone, fear and pain. Married to the abuser(s), then having no home, I just thank God today that I have a place to lay my head, and job to go to! Today, with no matter what happens, I know peace, because I know God, and I hope that is not considered offensive on a list. My sharing about God. I will respect all wishes, though, just let me know. I take the hep, fm and ra as same as the drink or the drug, one day at a time. So, thanks for the reply. I am proud to be in contact with you. Your proactive approach probably saves a lot of hiney's here, and elsewhere, too. I'll sign off, just got off of work and the grocery store and the darn groceries are still sitting in the bags! Hee hee. What a hassle to get them upstairs. I always put them down and relax a moment. Okay, groceries, here I come! God Bless, Dana Re: [ ] Hi, I am new to the site Hi, June Thanks so much for the reply. I am eager to hear what they tell your friend. If nothing else, I am in the same boat... I look forward to interacting with you in the future. Would you mind sharing a bit about your take on how you are handling the disease? Thanks, Dana ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
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