Hello group

May 29, 2006

Hello group

My name is Phil and I live in the uk, I'm 47 amd divorced with no kids

or pets.

I developed rheumatoid arthritis 4 years ago and I find it very

painful in the cold weather which were having here in the uk quite

often at the moment so I'm really looking forward to the summer coming.

I'm looking forward to making new friends here and getting to know you

all

Thanks

Phil

May 30, 2006

Dear Phil- RA is especially invasive in Men. They lack the hormonal protection. Be sure to ask your Doctor for a bone density to determine if you have osteoporosis. Take Glucosamine and Chondritin to keep your joints strong if you arent already and get on a calcium supplement. Most important for men is to be on either fosamax or actonel because deterioration in spine and back is a particular problem. Due to the fact that men do not produce estrogen, porosity and deterioration manifest very quickly. I wonder if estrogen/progesterone therapy research is being done to address this issue. I will research and get back to you with any info I find. Have complete body x-rays atleast once a year if not every 6 months. I used to work for the arthritis foundation here in the U.S. and have seen the ravages in men. www.arthritisfoundation.org Be well, Deborah

On 5/29/06, Philip Hamilton <hamilton103@...> wrote:

Hello groupMy name is Phil and I live in the uk, I'm 47 amd divorced with no kidsor pets.

I developed rheumatoid arthritis 4 years ago and I find it verypainful in the cold weather which were having here in the uk quiteoften at the moment so I'm really looking forward to the summer coming.I'm looking forward to making new friends here and getting to know you

allThanksPhil

May 31, 2006

Hi Deborah

Theres no doubt about it that I have ra, what medication I am on unfortunately I can't tell you as I'm totally blind but I used to see a doctor here for my ra but that has stopped now but the pills I'm on I've been told that it can cause stomach bleeding and liver damage so every six months I go for a blood test to make sure that theres nothing wrong with me.

The last x ray they took of me 15 years ago they told me I had the skeleton of a man twice my age and I have ra from the tip of my toes up to the back of my head so every day is a painful one for me but I have to put up with it and hope in the future theres a cure for it and we can live normal lives pain free

Phil

----- Original Message -----

From: Deborah Bargad

Rheumatoid Arthritis

Sent: Tuesday, May 30, 2006 7:43 PM

Subject: Re: Hello group

Dear Phil- RA is especially invasive in Men. They lack the hormonal protection. Be sure to ask your Doctor for a bone density to determine if you have osteoporosis. Take Glucosamine and Chondritin to keep your joints strong if you arent already and get on a calcium supplement. Most important for men is to be on either fosamax or actonel because deterioration in spine and back is a particular problem. Due to the fact that men do not produce estrogen, porosity and deterioration manifest very quickly. I wonder if estrogen/progesterone therapy research is being done to address this issue. I will research and get back to you with any info I find. Have complete body x-rays atleast once a year if not every 6 months. I used to work for the arthritis foundation here in the U.S. and have seen the ravages in men. www.arthritisfoundation.org Be well, Deborah

On 5/29/06, Philip Hamilton <hamilton103@...> wrote: Hello groupMy name is Phil and I live in the uk, I'm 47 amd divorced with no kidsor pets.I developed rheumatoid arthritis 4 years ago and I find it verypainful in the cold weather which were having here in the uk quiteoften at the moment so I'm really looking forward to the summer coming.I'm looking forward to making new friends here and getting to know you allThanksPhil

May 31, 2006

Hello Phill , Just reading here and looks like we are in the same boat , I was told the same thing about 5 years ago . And thanks Debra I didn't know all that either . john Phil <hamilton103@...> wrote: Hi Deborah Theres no doubt about it that I have ra, what medication I am on unfortunately I can't tell you as I'm totally blind but I used to see a doctor here for my ra but that has stopped now but the pills I'm on I've been told that it can cause stomach bleeding and liver damage so every six months I go for a blood test to make sure that theres nothing wrong with me. The last x ray they took of me 15 years ago they told me I had the skeleton of a man twice my age and I have ra from the tip of my toes up to the back of my head

Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

June 1, 2006

Dear Phil and - No one understands what RA can do to a man. It manifests so much quicker and is so much more aggressive. I knew a man in the support group I was in and he had the disease a year and already his ankles and wrists were fused. You both absolutely have my deepest understanding. Women have it, but men are quickly devastated. I will find out what I can for you both and post it to the board. Hugs, Deborah

On 5/31/06, john stratton <kentuckycowboy2@...> wrote:

Hello Phill , Just reading here and looks like we are in the same boat , I was told the same thing about 5 years ago . And thanks Debra I didn't know all that either . john

Phil <hamilton103@...> wrote:

Hi Deborah Theres no doubt about it that I have ra, what medication I am on unfortunately I can't tell you as I'm totally blind but I used to see a doctor here for my ra but that has stopped now but the pills I'm on I've been told that it can cause stomach bleeding and liver damage so every six months I go for a blood test to make sure that theres nothing wrong with me.

The last x ray they took of me 15 years ago they told me I had the skeleton of a man twice my age and I have ra from the tip of my toes up to the back of my head

Messenger with Voice.

PC-to-Phone calls for ridiculously low rates.

June 1, 2006

I did find this information. It is known that Estrogen does protect women from early OA. I think estrogen therapy for men may be beneficial. Hugs, Deborah

http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=7923746 & dopt=AbstractOn 6/1/06, Deborah Bargad <

dbargad@...> wrote:Dear Phil and - No one understands what RA can do to a man. It manifests so much quicker and is so much more aggressive. I knew a man in the support group I was in and he had the disease a year and already his ankles and wrists were fused. You both absolutely have my deepest understanding. Women have it, but men are quickly devastated. I will find out what I can for you both and post it to the board. Hugs, Deborah

On 5/31/06, john stratton <

kentuckycowboy2@...> wrote:

Hello Phill , Just reading here and looks like we are in the same boat , I was told the same thing about 5 years ago . And thanks Debra I didn't know all that either . john

Phil <hamilton103@...> wrote:

Hi Deborah Theres no doubt about it that I have ra, what medication I am on unfortunately I can't tell you as I'm totally blind but I used to see a doctor here for my ra but that has stopped now but the pills I'm on I've been told that it can cause stomach bleeding and liver damage so every six months I go for a blood test to make sure that theres nothing wrong with me.

The last x ray they took of me 15 years ago they told me I had the skeleton of a man twice my age and I have ra from the tip of my toes up to the back of my head

Messenger with Voice.

PC-to-Phone calls for ridiculously low rates.

June 1, 2006

Thanks Deborah

FromMr Philip HamiltonIn the northwest of EnglandUnited Kingdom

----- Original Message -----

From: Deborah Bargad

Rheumatoid Arthritis

Sent: Thursday, June 01, 2006 8:20 AM

Subject: [Norton AntiSpam] Re: Hello group

Dear Phil and - No one understands what RA can do to a man. It manifests so much quicker and is so much more aggressive. I knew a man in the support group I was in and he had the disease a year and already his ankles and wrists were fused. You both absolutely have my deepest understanding. Women have it, but men are quickly devastated. I will find out what I can for you both and post it to the board. Hugs, Deborah

On 5/31/06, john stratton <kentuckycowboy2@...> wrote:

Hello Phill , Just reading here and looks like we are in the same boat , I was told the same thing about 5 years ago . And thanks Debra I didn't know all that either . john Phil <hamilton103@...> wrote:

Hi Deborah

Theres no doubt about it that I have ra, what medication I am on unfortunately I can't tell you as I'm totally blind but I used to see a doctor here for my ra but that has stopped now but the pills I'm on I've been told that it can cause stomach bleeding and liver damage so every six months I go for a blood test to make sure that theres nothing wrong with me.

The last x ray they took of me 15 years ago they told me I had the skeleton of a man twice my age and I have ra from the tip of my toes up to the back of my head

Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

June 1, 2006

Thanks Deborah , john Deborah Bargad <dbargad@...> wrote:I did find this information. It is known that Estrogen does protect women from early OA. I think estrogen therapy for men may be beneficial. Hugs, Deborah http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve & db=PubMed & list_uids=7923746 & dopt=AbstractOn 6/1/06, Deborah Bargad < dbargad@...> wrote:Dear Phil and - No one understands what RA can do to a man. It manifests so much quicker and is so much more aggressive. I knew a man in the support group I was in and he had the disease a year and already his ankles and wrists were fused. You both absolutely have my deepest understanding. Women have it, but men are quickly devastated. I will find out what I can for you both and post it to the board. Hugs, Deborah On

5/31/06, john stratton < kentuckycowboy2@...> wrote: Hello Phill , Just reading here and looks like we are in the same boat , I was told the same thing about 5 years ago . And thanks Debra I didn't know all that either . john Phil <hamilton103@...> wrote: Hi Deborah Theres no doubt about it that I have ra, what medication I am on unfortunately I can't tell you as I'm totally blind but I used to see a doctor here for my ra but that has stopped now but the pills I'm on I've been told that it can cause stomach bleeding and liver damage so every six months I go for a blood test to make sure that theres nothing wrong with me. The last x ray they took of me 15 years ago they told me I had the skeleton of a man twice my age and I have ra from the tip of my toes up to the back of my head Messenger with Voice. PC-to-Phone calls for ridiculously low rates.

August 23, 2008

Dear Tawny- Have you tried an IV infusion like Remicade or Rituxan? Do keep fighting. I know its hard though. Feel free to email me anytime. I am here to listen. Yours, Deborah

On Fri, Aug 22, 2008 at 9:49 PM, tdianaok <tdianaok@...> wrote:

Hi,.....I have been a member, but haven't posted much. When I first

joined the group, I was looking for info on RA. Since then,

unfortunately, my fight with RA has taken a toll on me. It seems like

most of the meds just doesn't work for me. I haven't given up though,

I'm back on Humira and mtx, not much else to do. My joints are still

showing a lot of damage, and so much pain too live with. I hope to

post more, and help if needed. Thanks so much, Tawny

August 24, 2008

Hi Deborah,

I have not tried the IV infusion yet. I live quite a distance from my

rheumy, but I might have to take that next step. I make myself get

out of bed each day, for my family. It's so hard at times though.

Things have changed so much the last four years. I don't like the

person I have become, but not much I can do. I look in the mirror,

and don't even recognize the person I see. I stay in my pj's most

days, and try to at least brush my hair. My house was always so

clean, not anymore. I see the look on my family's face, and I know

they get tired of the life we live. I'm just surviving in this body.

I know many feel like me, we just have to stick together, and fight

this old disease. Thanks Deborah, for taking the time to write, I

know someone cares. You can also email me anytime, Tawny

August 24, 2008

Dear Tawny- The remicade infusion takes 2-3 hours once every 8-10 weeks. It has worked splendidly for me as far as joint pain is concerned. The rituxan is done over 8 hours but lasts 6 months!!! The remicade is a tnf blocker but the rituxan is a b-cell blocker. I highly recommend it. It should help with your overall quality of life. I have had this since 1994, am on my 23rd rheumatologist and there are things you may not know that might make a huge difference. First of all, having an autoimmune disease like RA also can and usually does cause severe chronic fatigue and fibromyalgia. Getting enough sleep is essential. Having a family is very very very difficult. You decline year after year and everything seems such a chore. I cant run a heavy vacuum, lift anything heavy or cook anything. I bake once a week and that is just a brownie for my guy. I do laundry and am very very good at that. On the days I take MTX, I usually sleep 12-14 hours. I lose an entire day. You also need to have your thyroid checked by an Endocrinologist as thyroid imbalance is common. I have large growths on both sides and am addressing that little by little. I have a little story to relate to you that will make you feel much better. I was born in Massachusetts and lived there most of my life. I decided in 1999 to move to Southern California to try and get to know my brother. He is the only family I have left. Both my parents passed on long ago. After a year there, my Cyclosporine therapy stopped working and I started the Remicade infusion. After three days I was like my old self. I could go to walk a mile, go to the gym, had loads of energy and it was an

absolute miracle. I cant say enough about it. Before I got the infusion I was in a very bad way. In pain all the time, bad fatigue etc. I had befriended a woman in the complex who worked at a bank and often I would allude to talking to her about how I felt. She always made comments like " Do we always have to talk about this? " " I am tired of talking about it " A healthy person doesnt usually have the patience for this illness or how it totally consumes us. After a year I started to feel awful. I had trouble sleeping, felt shaky all the time and I could hear my heart pounding in my ears. Despite test after test they couldnt find anything. I began to panic and decided to move back home to see if the change would help. They diagnosed me with hyperthyroid and I was put on something for it and am doing fine despite the growths they found. After I was home about 6 months I randomly called my girlfriend above mentioned. She began to " ache " in places and felt tired all the time. She had carpel tunnel syndrome from typing at the bank and had surgery which left her unable to work. A few months after that things began to escalate. She was tired all the time, ached all over, had no energy. They havent made a formal diagnosis of RA but she does have autoimmune disease. She can only be up for a few hours at a time. She is on a morphine patch. She called me a few days ago and all we did was talk about how she felt. She gets up at 6am has breakfast, etc and does a few things then by 11 she is back in bed to sleep until 4 or 5. She has dinner and then goes back to sleep around 9 or 10 and is up walking the floors in pain. Her brother moved in with her to help her with everything she cant do anymore. I always remember the days when she didnt want to talk about how bad I felt having RA and now she cant talk about anything else. If even one of your family was in your body for just 10 minutes they wouldnt feel " inconvenienced " by your incapacity. Remember that you have a very limited energy bank, and you have to do small things in increments, making small withdrawals. I am frightened by how much worse energy wise I am then when I first started on Remicade 8 years ago. I realize once my bone pain is aleviated and addressed, then my chronic fatigue and fibro come in full force. I think the TNF drugs enhance the CFS and Fibro. Most days when I get up, I have to kick start myself with prednisone though only 5mg. It does help. Please do try the IV meds and see if they help more. I think they will. You will experience much better quality of life. I live my life on my own terms. Life conforms to me now. It has to. My wellness is determined by how well I eat and sleep and stay on the meds. I am not a morning person. I cant compete with healthy people and dont want to even try. They live technically in a different reality from mine. I stay up reading into the early morning and sleep most of the day. My breakfast is everyone elses dinner. My guy works at usps 12pm-11pm so I eat out most nights alone and on the weekends we eat out. Is he inconvenienced by this? No. He is so grateful for what I can do. Its alway enough. The effort in itself is enough. I do one good thing for myself every day. That can be anything that gives you peace and comfort and joy. For me it is knitting or reading a book. My hands need to exercise and my brain as well. Nurture yourself. Pace yourself. Manage the things you can and dont even think about anything you cant manage. You have to have people help you with things. You have to ask them and they have to be okay with it. There isnt a choice. If anyone demeans you or even seems the slightest bit put out then you have to realize they are ignorant about what you are going through and they have to understand. Either by an RA support group via the arthritis foundation where I was once a group leader, or your doctor. This disease is psychological as well as physical and you need to see a therapist to help deal with the loss of your old self and accept your new self as well as possible. Its all a matter of perception. This disease inside us is a parasite. Make no mistake about that. It eats away at everything we are month after month and year after year. I get up out of bed, take a shower and go out for dinner every night after ten hours or so of sleep. I live in a third floor walk up and drive to my guys house to take care of his place and do his laundry etc. Thats a full time job let me tell you. I could let it take me and I could find myself in a very desperate place. The disease feeds on your despair and anger and frustration and most of all the " stress " state it wants to leave you in. I wont let it. I refuse to give in. I get out of bed because it doesnt want me to. I take a shower and get dressed because it wants to leave me in bed in my pajamas. I go out and do one useful for myself and for someone else. Just one thing some days, more other days. It all depends on how you are feeling. Sometimes I feel I can be around other people and some days I avoid it like the plague. Just take one step at a time and remember I am here to listen. Deborah

On Sat, Aug 23, 2008 at 8:58 PM, tdianaok <tdianaok@...> wrote: