Hello ~ I'm a new member

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Little Libby
New Member


Date Joined Feb 2010
Total Posts : 10
   Posted 2/15/2010 9:45 PM (GMT -7)   
Hello ~
I read that new members are asked to introduce themselves before joining any current conversations. Hello! I'm 58 and have been on Remicade/Methotrexate/Prednisone for almost 4 years. Remicade is 5 vials every 8 weeks. Methotrexate injection 1cc/week I have read everything about both drugs, and altho they certainly DO give relief to my RA, what I read about long term use and side effects is disturbing.
I was traveling last summer and had to extend my infusion from 8 weeks to 12 weeks. By about week 10 I could hardly walk. I was worthless. Every little thing hurt, even turning over in bed. By week 12 I was a total mess. This horrified me because the pain & inflammation that showed itself to me was MUCH WORSE than the way I felt 3 years previous when I first began the infusions. It seems the infusions have covered up how far the RA has advanced. Before Christmas I told my doctor how worried I am about the effect of these meds on my organs (liver & kidneys, mostly) and asked her if I could keep taking the meds for the rest of my life? She answered that hopefully there will be a cure for RA soon. A very hopeful & tactful answer. I'm still very frightened about the extent I am dependent on the meds and I came to this forum to ask if anyone has ever made the decision to go off the infusions and check-in to a restorative/organic/healthy clinic somewhere for a month or longer to help regain a somewhat pain-free and med-free life? Or.....is it infusions forever? Thank you for any insight ~ Little Libby

SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 2/16/2010 12:28 AM (GMT -7)   

Hi Libby and welcome to HW and the RA forumsmilewinkgrin

I too hate the poisons we put in our body and the long term effects, but what else can we do?

I would love to think there was a 'cure' coming soon or some 'natural' way of maintaining wellness but I guess Ive become a pessimist and think these things are unlikely.

I take these meds for quality of life and think to myself I will deal with whatever comes down the track, but how long is that track?

I guess trying new ways of dealing with our disease couldnt hurt and I would love to here of how other people cope med-free.

Keep posting on how you are progressing

Jo

 


Crohn's Disease, Ankylosing Spondylitis
Current meds: Methotrexate, Prednisone, Humira
Bowel Resection Sept. 07
 
Forum Moderator - Rheumatoid Arthritis


teddybearweiser
Veteran Member


Date Joined Oct 2004
Total Posts : 3042
   Posted 2/16/2010 1:37 AM (GMT -7)   
Hi Libby, and Welcome to the healing Well family.
Hi, I am teddybearweiser, I am a male.
I was diagnosed with crohns disease when i was admitted to the hospital

in 1992, in Jan of 1993 I was back in the hospital for surgery for my crohns. I had part of my right colon resectioned with ilecolonstomy.

My GI doctor has me on and Humira. B-12 injection once a month.
Also diagnosed with Rheumatoid Arthritis.


Little Libby
New Member


Date Joined Feb 2010
Total Posts : 10
   Posted 2/16/2010 8:38 AM (GMT -7)   
Thank you Jo & Teddybear ~ it is a pleasure to meet you and I appreciate your speedy replies to me, the newcomer. I'll stay on my RA program but will keep searching and will post any good news I find. I still have hope there is good news out there. Wouldn't it be grand if it was as simple as eating a turnip each day! Thank you ~ Libby

golitho
Veteran Member


Date Joined Sep 2008
Total Posts : 1670
   Posted 2/16/2010 4:59 PM (GMT -7)   
I have met people who were on infusions or humira mtx combinations in the past and now survive on fish oil supplements! One guy told me he had to give up work his knees and feet were so bad and now he runs and swims. He moved to a warmer climate and lives organically and swallows mountains of fish oil! He was diagnosed 14 years ago and has been med free for 6 years.

I have started on the mega dose fish oil a few weeks ago and will let you know if anything happens thats magic. You're suppose to take 2.3 grams a day. I sourced a mega fish oil capsule at 1000mg so I don't have to make a meal of fish oil capsules. There is information on fish oil supplements on the Australian Rheumatology Association website, if you want to read up about it. My rheumy put me onto it.

The second person I met went into remission and simply stopped taking his mtx and he has been fine since. So it can happen, miracles happen. Don't give up hope, golitho

Little Libby
New Member


Date Joined Feb 2010
Total Posts : 10
   Posted 2/16/2010 8:46 PM (GMT -7)   
Hello Golitho~
Thank you for that interesting information. I read about fish oil, too, and just started to take a few capsules a day of an Omega 3 Fish Oil product. I will report back if I notice any improvement. I appreciate your response. Libby

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 2/16/2010 11:33 PM (GMT -7)   
Welcome Little Libby,
 
I too have been taking the fish oi. for some weeks and feel you just have to try what you can these days. Doing the medical route is what we all have to do, but it doesn't do any harm to help things along by trying something different in the more natural way. You just need to do what you can to make yourself feel better mentally and physically.
 
You've come to the write place to either moan, discuss or simply have a good chat about your day. Your be heard by wonderful people who all know what your going through.
 
I would say I've made some great understanding, kind and thoughtful connections on here (you know who you are tongue ).
 
Keep posting and look forward to hearing from you again.
Peggy Baggins
 
AS - High Blood Pressure - Irregular Heartbeats - High Cholesterol - Insulin Resistants Disease
Meds: Remicade, Micardis,  Verapamil,  Lipitor,  Metformin


keep the faith
Regular Member


Date Joined Nov 2009
Total Posts : 91
   Posted 2/17/2010 7:58 AM (GMT -7)   
when Golitho first mentioned fish oil I added them to my daily vitamin routine. When I saw my rheumy I told him and he said I could take anything that made me feel better. The brand I'm using is 2400 mg in a daily serving. I'm not sure it has made a difference yet but I'm not giving up.  smilewinkgrin

Little Libby
New Member


Date Joined Feb 2010
Total Posts : 10
   Posted 2/17/2010 3:04 PM (GMT -7)   

Thank you Peggy ~

I live in a small town and know of a few women in town who have RA but they aren't really my "friends."  I don't feel comfortable talking to them about all this.  Somehow, even tho I don't personally know folks who post here, it seems very comfortable already.  I already know I won't be judged here and I appreciate being able to vent to people who know exactly what I'm talking about.  I don't even feel comfortable talking to my husband about it because if I say anything about feeling achy, he worries.  So thanks for what you said to me and I hope the fish oil is the miracle.  It will take several months, I understand, to offer relief.  Libby

 


peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 2/17/2010 4:26 PM (GMT -7)   
Hi Libby
 
Your more than welcome with any help I/we can give you. I know what you mean about talking to husbands, they do worry so much when all your doing sometimes is verbalising/sounding off on how you feel, and you know they can't do anything.  I had posted many times on here before telling my husband about the site. He was very supportive when I told him and really pleased that I could talk to people who truly understood as he said 'sometimes he just feels useless and not able to do anything for me'. But we know that's not true, because they are the ones that we lean on when it's necessary, and we love them for it.
 
I/we  look forward to many more chats with you as I'm sure I can speak for the others, so keep posting and you may like to try the 'moanaloge thread'?
 
Peggywink
Peggy Baggins
 
AS - High Blood Pressure - Irregular Heartbeats - High Cholesterol - Insulin Resistants Disease
Meds: Remicade, Methotrexat, Micardis,  Verapamil,  Lipitor,  Metformin

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