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Joined: Apr 2002
Posts: 12,465
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mig Offline
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Joined: Apr 2002
Posts: 12,465
Hey Kevin, glad that we could all help to add a little perspective for you, especially if it's helped to put your mind at ease.

Accepting the diagnosis really is a process, when I look back, I think it took me in the neighbourhood of 3 years to really get my mind wrapped around the concept of having a chronic illness and it's different for everyone... but you will get there too. yes So give yourself some time and don't be surprised if you go back and forth on the acceptance thing for awhile. For now, all you need to do is get back to living as best you can, ask your docs for help when you need it, make them aware of any changes, read up on AS if that helps or just ignore it for awhile if that helps more.

Any questions, just fire them at us and someone here is always bound to help!! The friendly support I've found here has been a big comfort.
Nice to have you in the group!
mig


mig
Joined: Feb 2011
Posts: 1,968
Pea Offline
Captain_AS_Kicker
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Captain_AS_Kicker
Joined: Feb 2011
Posts: 1,968
Thank's everyone for the encouragement offered about taking the TNF blocker's. I am in incredible pain and waiting to see my Rheumatologist next week to talk to him about starting a blocker. My percocet barely get's me through the night now and the Sulfasalazine is not working but I have only been on it for 3 week's. I just got a cortisone shot in one foot yesterday and if it works I will get one next week in the other but my back, my ankles, my feet and eye's are hurting so much even using special eye drops that I NEED to hear encouragement also as to the life changing affects these TNF blockers offer. Thank you guys. I am new here also.
Pea


Pea
Diagnosed with A.S. 29 year's ago.
Diagnosed with Fibro 10 year's ago.
Remicade, Intrathecal Pain Pump 2013
Joined: Jul 2010
Posts: 1,190
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Steel_AS_Kicker
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Steel_AS_Kicker
V
Joined: Jul 2010
Posts: 1,190
I thought I would add that when I get a cortisone shot, sometimes I feel anxious and what has helped me is taking magnesium tablet/supplement, the kind you find at a drugstore. So far this has helped me in that regard. I hope you continue to be pain free, I might try Humira soon if Orencia does not do the trick. I think I am too much pain for it to be working great,however it has helped my numbers come down quite a bit??


Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

excess fat/oils = pain for me
recipes for raw food on Youtube "raw food romance"
and "healing josephine" Josephine is in remission from RA after two years by change diet/exercise
Joined: Oct 2001
Posts: 107
DLG Offline
Journeyman_AS_Kicker
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Journeyman_AS_Kicker
Joined: Oct 2001
Posts: 107
I was on either Enbrel or Remicade one from 2006 until 2009. Rheumy checked my CBC's and my white blood cells were elevated. They stopped treatment and sent me to an Oncologist. First time or two they said that they didn't think things were to bad and that they Rheumy could continue treatments. Then the last time things were strange on CBC's the Rheumy sent me back to the Oncologist. This time the Oncologist diagnosed me with Chronic Myeloid Leukemia. That was 12/2009.


Joined: Apr 2009
Posts: 1,576
Gold_AS_Kicker
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Gold_AS_Kicker
Joined: Apr 2009
Posts: 1,576
DLG,

hugss My heart is heavy for you. Very sad to hear of your diagnosis. I read up on CML just now, and I don't understand all of what I read but I do give you my heartfelt sympathies.

Does your situation put you in the class of patients in whom the CML is caught and therefore treated early on?? That is good news, right? How are you doing now?

In my twisted and painful and frustrating journey with AS I have managed to be allergic to all the tnf blockers current and future (enbrel stopped my heart 4 times, thus stopping me from ever trying any in the future) and now I can't take any NSAIDS due to gut damage. I have had to turn into a nature lovin' nut granola type, (as I used to refer to them, of whom I am now one!!! lol.)

In my natural healing studies I have come across some promising treatments for cancer. Some of, if not all of these things can be done in addition to your current medical treatment and they in fact, have been shown to make medical cancer treatment more successful.

Here is a little light reading for you.

http://www.doctoryourself.com/cancer.html

http://www.doctoryourself.com/gersonmovie.html

http://www.doctoryourself.com/cancernutrition.html

http://www.doctoryourself.com/hoffer_cancer_2.html

http://www.doctoryourself.com/gersonspeech.htm

There are 11 more articles on his website home page. I have linked the first 5 above. I'd link them all for you but my wrists are fused and hands are cramping up!! Oy! crazy If you read all these and get hooked like I did and want to read more, just go to his www.doctoryourself.com home page and down the left hand side you can see all the illnesses and vitamins listed.

You getting CML, and Orch getting MS are the two bad side effects I have heard of from TNF blockers. This disease is so terrible though, and for some people the medicines give them their lives back. It is scary, and promising, and terrifying all at once. My mom couldn't live without her Humira. She has psA.

Hugs and love and support to you all. It is heavy stuff, indeed.

-Donette

Joined: Jul 2010
Posts: 1,190
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Steel_AS_Kicker
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Steel_AS_Kicker
V
Joined: Jul 2010
Posts: 1,190
DlG,
I hope and pray you get through this hard time with as little pain as possible. I hope the best for you and better health returns to you.Take care,


Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

excess fat/oils = pain for me
recipes for raw food on Youtube "raw food romance"
and "healing josephine" Josephine is in remission from RA after two years by change diet/exercise
Joined: Oct 2001
Posts: 107
DLG Offline
Journeyman_AS_Kicker
Offline
Journeyman_AS_Kicker
Joined: Oct 2001
Posts: 107
Thanks for the well-wishes. I am on Tasigna now. They say I will probably be on it the rest of my life. My Oncologist also said that I may eventually have to have a bone marrow transplant. We'll just have to wait and see.


Joined: Jul 2009
Posts: 296
Third_Degree_AS_Kicker
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Third_Degree_AS_Kicker
Joined: Jul 2009
Posts: 296
I've been on humira 2 years really no problem until now i'm dealing with bronchitis and I seemed to catch a cold the day after taking the shot now i'm sicker than a dog. but I would hate to not have it like you said my life is almost 100% better on the humira good luck


Life is short stop and smell the roses
Joined: May 2011
Posts: 15
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New_Member
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Joined: May 2011
Posts: 15
Hi Kevin,
I am starting my Humira in the next few days (today or Tuedsay??) and I am frightened...and I am a nurse!! For me, at this point in time (which is what is important, right?), it is a better option than living with the pain, sleeplessness and inability to live my life the way I want. After reading these posts I am excited to get started and see if it works for me. What I wanted to share with you is that I am an Emergency Room nurse and as you can imagine, I am faced with every germ that walks through the doors of my workplace. I am going to give it a go, and be super vigilant with handwashing and sanitizer. My boss is agreeable to keeping me off of the triage desk for a while until I see how I handle and react to the Humira.
I should say too, that I am afraid of the long term affects listed by the drug company, but understand that they have to report everything they run across and I personally would be unhappy if they didn't. It doesn't mean I will have to deal with it. This is such a personal decision to make too for each of us, I am sure. So, for me if I can live pain free (or relatively so...) and live life today doing the things I want to, like swim, garden and ride my bike, oh and pick up my grandson, then I feel I can take a risk.
Don't know if this helps you, its my story tho, and I'm stickin' to it!


Melissa
Diagnosed AS 2011: Finally, a name for the pain
Trying Humera
Trying Starch Free Diet
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