"my" Arthritis update

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Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 10/11/2006 4:35 PM (GMT -7)   
Hello to all,
 
It's me again.
I posted some topics on this forum saying that I suffer from reiter's syndrome, a form of reactive arthritis. I would like to update the info on my condition. Last 3-4 months I have mainly low-grade fever, abdomen aches, eyes discomfort. Last month I went onto immune supporitives, Aloe Vera ESI, herbal extracts for immune system stimulation, vitamin B complex, and a mild antidepressant called ... i forgot its name... Well, I'm happy to tell you that I spent so much time at home, became unmovable, but recent days I had a trips here or there and even participated on some parties ... and exactly when I went out in public I was able to realize that I'm so happy to announce that my arthritis is almost unnoticeable, my abdomen aches are also unnoticeable, still experience some very-low-grade fevers at the afternoons and evenings (98.9f), and still some mild eyes discomfort almost every day at the afternoons. Despite of this I could say that the things are generaly going okay.... I'm happy.....
 
Good luck to all.
There is a light in the tunnel, and it's not a train.
Official dx, but I have doubts: chronic reiter's syndrome (1yr and 6 mnths).
suffer form chronic uveitis, conjuctivitis, mild arthritis, subfebrile fever and fatigue, also showing some strange kidney pain


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 10/12/2006 3:56 AM (GMT -7)   
Marius!  i wondered about you and hoped you were doing well.  great news that you  are out and about and feeling better.  keep up the treatments that are working for you and enjoy life again tongue
 
keep us posted ~*yalinda tongue

Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 10/12/2006 2:18 PM (GMT -7)   
yalinda said...
Marius!  i wondered about you and hoped you were doing well.  great news that you  are out and about and feeling better.  keep up the treatments that are working for you and enjoy life again tongue
 
keep us posted ~*yalinda tongue
Thanx yalinda,
 
Now is the time that something have to motivate me, because I started to excess with alcohol last 3-4 days, because I felt better. It's not good for the immune system - alcohol drinking, I have to do something on this issue immediately.....  I have started to run in the park in the morning again .. that's good, I, have to hold it on...
 
Please............... let it be.

Thank you for your answer.
I'll  keep in touch.
Be well....


Official dx, but I have doubts: chronic reiter's syndrome (1yr and 6 mnths).
suffer form chronic uveitis, conjuctivitis, mild arthritis, subfebrile fever and fatigue, also showing some strange kidney pain

Post Edited (Marius123) : 10/12/2006 3:25:31 PM (GMT-6)


yalinda
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Date Joined May 2006
Total Posts : 1179
   Posted 10/15/2006 5:54 AM (GMT -7)   
hey marius sorry i didnt follow up sooner been crazy here with tons of snow.... if u read my christmas post...... please you are young and have a world ahead of you get out and seek either counseling or friends and family but try to stay away from the evils of alcohol........ not only do the meds and alcohol not mix but it really never really helps...... take a daily walk call a friend or post on here when you need someone we are all here for you ...... i hope to hear from you soon with good news that you are still gettin out take care marius ~* yalinda

Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 10/15/2006 1:05 PM (GMT -7)   
yalinda said...
hey marius sorry i didnt follow up sooner been crazy here with tons of snow.... if u read my christmas post...... please you are young and have a world ahead of you get out and seek either counseling or friends and family but try to stay away from the evils of alcohol........ not only do the meds and alcohol not mix but it really never really helps...... take a daily walk call a friend or post on here when you need someone we are all here for you ...... i hope to hear from you soon with good news that you are still gettin out take care marius ~* yalinda
Yalinda,
 
I heard on the TV in western NY state, there's been a lot of snow now, it's supprisin, middle of october - snow storm,  however, I hope you manage with it;). Here's been a lot of rain but snow is only on the highest mountain peaks yet;)
 
Yes Yalinda I shouldn't drink alcohol I know that. I don't mix it with medicines now, only with herbs. But alcohol drinking is harmful even without medicines I know that, especially for a person who has been wondering for the last 3 months, whether he has or not has crohn's disease <-- like me. However, not have official diagnosis of crohn yet. The problem is that I'm so alone, I'm still in deep depression and I can't find anywhere else comfort yet. I've never been a "drinker",  but I can feel now that I can hardly withstand of the troublesome dillema - "will I live normal live again, or I will not". Some1 must give me a hand right now, but seems like ,there's nobody except my parents (of course). I wish I have some "good" friends of my generation who would stay with me constantly, exactly in this moment. But there aren't.
Yesterday I played table-tennis with an old "know", I felt my right foot hurts a little again, today also, I can't resist all this changeable situation without a stable friend ;( But the worst is that my current friends quickly gets bothered of me.
I used to live normal life, It's not fair now, so sudden change! I worked well payed job as a software programmer, I had too much friends but as I realize now, nobody has been a "real friend of mine", people can hardly have "real friends" at 24 yrs old, that's the silly fact.
 
Where do I make my biggest mistake, tell me frankly,  please? (excluding that that I felt sick last 2 years) ?
 


Official dx, but I have doubts: chronic reiter's syndrome (1yr and 6 mnths).
suffer form chronic uveitis, conjuctivitis, mild arthritis, subfebrile fever and fatigue, also showing some strange kidney pain

Post Edited (Marius123) : 10/15/2006 2:13:42 PM (GMT-6)


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 10/15/2006 1:39 PM (GMT -7)   
marius ~no mistakes in life only lessons learned. i know it must be hard a young man feeling so ill. i think you need to do as i do and take it one day at a time. you may or may not know i work with the blind. i often refer to an old phrase with my client to see that the glass is half full verses half empty. meaning look at what you have verses what is missing. so often we focus on loss that we forget what we do have and take it for granted. like it sounds like you have great parents. many of us no longer have our parents or never had decent ones to begin with. i tell my girls since they were babies... friends will come and go but family is forever.
i also have this writing on my desk that some how sates that attitude is 90 % of who we are and how successful we can be in life. i believe that. no one wants to be around someone who is always negative. we have to put on a smile even when we hurt sometimes. dont get me wrong i like many others need to be miserable at times and complain about the pain and limitations trust me i hurt and am sick right now but i keep pushing myself for others and that has helped me.
what do you enjoy? do you live in a village or a city? i am certain a city would have more options for socialization.
i am sorry life has been so tough lately. keep getting out in the fresh air and try to find something positive to build on each day. then when all else fails come on line and B**** away! ( that may be hard for your computer to translate as i didnt swear online) we know what a bad day feels like, and hopefully you will have better days soon.... i have.... "guilty feeling"..... been so much better. i wish that for everyone else too! even my bad days are not that bad anymore compaired to this past spring. keep your chin up and smile it IS contagious! :) yalinda

PiaSava
Regular Member


Date Joined Sep 2006
Total Posts : 265
   Posted 10/18/2006 10:12 AM (GMT -7)   
Hey Marius...
I know how you feel, but please try and hold on to the positive things that you have in your life. Like yalinda said, your parents! I'm not all that young longer (even tho I feel young) I'm into my 40's now, but I have moved around alot in my life and lack the good friends that you talked about. My parents have passed away and I am having a hard time getting my husband to understand just how hard it is for me to accept the fact that I'm ill. Not to speak of the fact that I am scared of my future. I don't think he or anyone else that doesn't have a chronic illness can understand anyhow. So again.. I try and use this board to my advantage and I also try to help out where I can.

I am still waiting for a real diagnose as well. The doctors don't know if I have UC or MC,and I have lots of arthritis pain and sooooo many questions to ask my doctor. I am not going to be seeing him for another month or so, and when I try calling him... well I feel he can hardly remember who I am. Even if he did, I feel he is almost mad at me for calling the times I do. Where I live its not easy to see a specialist when you want, you have to wait til its your turn..

I am trying to keep my head up and thinking about the good things in my life. My husband who I love dearly, my kids, and last but not least I even try to be thankful for this disease. It has given me a whole new perspective on life. I see things from another view after getting sick, and even that is positive!

Take care of yourself, and if you feel you cant handle it, please talk to your GP about it. This way you can talk to a professional at least.

Hang in there.. Once your way down low.. there is only one way to go... and thats UP!!!

Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 10/19/2006 7:26 PM (GMT -7)   
PiaSava said...
Hey Marius...
I know how you feel, but please try and hold on to the positive things that you have in your life. Like yalinda said, your parents! I'm not all that young longer (even tho I feel young) I'm into my 40's now, but I have moved around alot in my life and lack the good friends that you talked about. My parents have passed away and I am having a hard time getting my husband to understand just how hard it is for me to accept the fact that I'm ill. Not to speak of the fact that I am scared of my future. I don't think he or anyone else that doesn't have a chronic illness can understand anyhow. So again.. I try and use this board to my advantage and I also try to help out where I can.

I am still waiting for a real diagnose as well. The doctors don't know if I have UC or MC,and I have lots of arthritis pain and sooooo many questions to ask my doctor. I am not going to be seeing him for another month or so, and when I try calling him... well I feel he can hardly remember who I am. Even if he did, I feel he is almost mad at me for calling the times I do. Where I live its not easy to see a specialist when you want, you have to wait til its your turn..

I am trying to keep my head up and thinking about the good things in my life. My husband who I love dearly, my kids, and last but not least I even try to be thankful for this disease. It has given me a whole new perspective on life. I see things from another view after getting sick, and even that is positive!

Take care of yourself, and if you feel you cant handle it, please talk to your GP about it. This way you can talk to a professional at least.

Hang in there.. Once your way down low.. there is only one way to go... and thats UP!!!
Hello PiaSava,
 
I'm in the same situation like you, waiting for my disease for development to get a proper diagnosis. You may guess reiter's (reactive arthritis) is not an "earnest"  diagnosis for a condition lasting for almost 2 years now ;) But godness my symptoms are very mild and still does not give the docs courage to diagnose me with some if the "chronic"-s. By the way, now I realized what the name of Crohn's disease is coming from. "Chron" from chron"ic", but with messed position of the "h" ;)  When you say that the doc hardly remembers you when yo call him/her that makes me sad. Then why don't you try to find a doctor for your self. A doctor who listens you. I can open-minded say that the biggest "crime" of the docs of the 21th century are the new biologics immune-suppresive meds. That opens quote that there is a "new" light in the tunnel, and it's not a train. Keep your fingers crossed. I feel that I will be right, but they will have difficulties confessing it. I'm so happy that you have your hubby. Do whatever it takes for him, he is THE MAN!!!
 
Please keep in touch.


Official dx, but I have doubts: chronic reiter's syndrome (1yr and 6 mnths).
suffer form chronic uveitis, conjuctivitis, mild arthritis, subfebrile fever and fatigue, also showing some strange kidney pain

Post Edited (Marius123) : 10/19/2006 8:31:17 PM (GMT-6)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 10/20/2006 12:48 AM (GMT -7)   

what's up marius,

personally wouldn't jump to the conclusion that the DMARDs and biologics are a "crime".  i mean, yes...the price is a crime for sure as is any costly antibiotic, new medicine, chemotherapy.  but for people like me, if i were not on a TNF chemotherapy, i would most likely be crawling to bathroom & unable to walk like  was 4 years ago.

now, there has never been a "promise" that these rheumatic TNF and bio's "make AI disease arthritis better"  their goal is to help SLOW the progression of the disease..which depending on what a person has...can be a nasty progression.

i certaintly would not want to stop any of the dmards or TNF meds and allow the RA to effect my heart and lungs further.

and also, the whole point of immunosuppressants is to act on "too much immune" which are...autoimmune diseases.

it's complex, it's debatable....it's a MESS sure!

in all....any disease is a crime.

take care,

erin


Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Remicade Infusions; Prednisone 20mg; Pentasa 4G daily; Imuran 75mg; Dilaudid; Diazepam; Avinza; Reglan; Antivert; LidoDerm; MiraLax; Restaril; Trazodone & too many others.


Marius123
Regular Member


Date Joined Aug 2006
Total Posts : 142
   Posted 10/20/2006 3:31 AM (GMT -7)   
erin kachmar said...

what's up marius,

personally wouldn't jump to the conclusion that the DMARDs and biologics are a "crime".  i mean, yes...the price is a crime for sure as is any costly antibiotic, new medicine, chemotherapy.  but for people like me, if i were not on a TNF chemotherapy, i would most likely be crawling to bathroom & unable to walk like  was 4 years ago.

now, there has never been a "promise" that these rheumatic TNF and bio's "make AI disease arthritis better"  their goal is to help SLOW the progression of the disease..which depending on what a person has...can be a nasty progression.

i certaintly would not want to stop any of the dmards or TNF meds and allow the RA to effect my heart and lungs further.

and also, the whole point of immunosuppressants is to act on "too much immune" which are...autoimmune diseases.

it's complex, it's debatable....it's a MESS sure!

in all....any disease is a crime.

take care,

erin

Yes Erin,

 

You are right. I did express an opinion too unclear.

I ment that the prescription of the biologics on possible wrong diagnosis, that is a definately a crime.
Imagine undiagnosed lyme disease and TNF inhibitors applyed?

about the price of the biologics it's undisputable crime, It is called oligopol, it's somethink like monopol but supported by more then one company with agreement between, which is the case with the biologics producers. This is 100% crime when it's about health and judjement must define it. So Erin when we have one crime related to the people's health why we should exclude the possibility of another or many other crimes related to the people's health?, crimes like "The biologics prescriped for arthritis right away since the diease onset as if to slow down the disease progression but most likely it's because of the power of the money and how they gets transferred from the insurance companies to pharma-market monopolist". It's easy to hear the doc when he/she says - "you have to be on remicade now, to prevent your disease from progression"?? But did we question ourselfes when we talk to a lawyer do we have doubts about a particular right or other low's issue said by our lowyer. We have no doubts! We trust to our lawyers because we know nothing about low but they have the proffesion. But the lawyer may also make mistakes like you at your job, like the doctors, like everyone in their jobs. The mistake is forgiven ones if it is caused by lack of knowledge or even carelessness but it deserves jail when it's incited by the power of the money. The things still continues to put question marks are do realy the biologics prevents the  disease from pregressing or even may worsen it? That is still unlear due to the lack of very-long trials (tens of years, or even lifetime trial has never been yet)..Yes they will be someday and there is no other way for this to happen.

"and also, the whole point of immunosuppressants is to act on "too much immune" which are...autoimmune diseases. "

Erin, there's currently a dispute over the medical community on whether all AI diseases are caused by "too-much immunity". There has been a clue about one of them - "crohn's disease" which is caused by lowered naive immunity, but not "too-much immunity". Here's the article, I allow myself to post the link with no special permission gained because it's healingwell news article.

http://news.healingwell.com/?p=news1&id=531200

That was my opinion about the biologics and the second "possible" crime, but now more clarified.
We reached consensus about the first "crime", about their price. The second "crime" is controversial and very unproven and I will push you to forget it, at least for now.
I hope I would not get banned for this, because of the power of the money.
To all people reading this post: Don't listen to me, I'm just a wiseacre sufferer!

________________________________________________________________
Nobody must try to take the people's right to have doubts.


Official dx, but I have doubts: chronic reiter's syndrome (1yr and 6 mnths).
suffer form chronic uveitis, conjuctivitis, mild arthritis, subfebrile fever and fatigue, also showing some strange kidney pain

Post Edited (Marius123) : 10/20/2006 5:10:47 AM (GMT-6)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 10/21/2006 10:57 AM (GMT -7)   

Well said!  Oh, I agree about the insurance & money being criminal...for sure.  I mean, look at how many "really nice" commercials that are constantly on television! Like they don't cost a pretty penny!

What irks me?...the media shows people that are doing and looking pretty darn normal to me!  I mean, talk about false hope sometimes.

I've thought about it often...if I had begun TNF or DMARD therapy "early" within the 1st year or so of diagnoses....would I be as bad as I am now?  The thought of the answer "yes" makes me sick; because I was young (16) and did not get a push to start treatment & basically ignored the RA to the degree of disability until a treatment was initiated. 

On the other hand, for the people to seek a doctor at the onset of their symptoms, get on a treatment program FAST, and are then able to avoid how devasting RA can get...boy am I GLAD THEY DID! And that is why I urge people to seek opionions, doctors and treatment for RA early.  It progresses just way too fast and I would hate to hear of anyone waiting the way I did.  And for the people who respond well to treatment and can resume normal lives? It makes these meds a true Godsend.

I don't think it'll ever be a clear cut answer to why and how these things happen...but maybe in our lifetimes we'll see it.

You take care Marius...and NO, no one will get banned from expressing an opion.  I enjoy reading your input. :-) Have a goofd day.

Ciao Ciao,

erin


Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Remicade Infusions; Prednisone 20mg; Pentasa 4G daily; Imuran 75mg; Dilaudid; Diazepam; Avinza; Reglan; Antivert; LidoDerm; MiraLax; Restaril; Trazodone & too many others.

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