[Grey Matter]

I have been diagnosed with Adult Onset Still's Disease. A rare type of arthritis that destroy your joints and gives you daily high spiking fevers. I have been going through the ringer with this since August, and to be fair to myself, I have been really quite brave about it. I have had steroidal treatments, infusions, you name it.

Recently I was put on a steroidal trial where I'd go from 30mgs of prednisone to 20, 15, 10, etc. Once I hit 15, the pain came back at full force. And I had to call my rheumatologist.

It is severe. And has been taking over my life for what feels like a life time. After our conversation on the phone, I was put back on 30mgs of pred, but then was told I would be trying a new medication since the diagnosis is now final.

Thing is, it is used as a chemo therapy. And I am down right terrified. I have had a brave face on since this all began. I wouldn't let it bring me down so low that I'd break emotionally. But this. This I was not ready for. She explained to me that a lot of the symptoms those on chemo (a higher dosage then what I would be getting) are usually experienced by others. Hair loss, weight loss (which isn't good considering I am anorexic), skin issues, little to no defense against illness. I am. So. Scared.

I am scared, and angry, and upset, hurt, frustrated. It's all pilling up. I am just terrified of what is going on in my body, and what is going to happen to my body.

I don't even want this body anymore. I wish I could just be well.

[HealingTimes]

I am so sorry that you are going through this, TI. Do you have anyone to support you in RL?
How about looking for some support groups for people with the same condition?
Sending you massive hugs (if that is OK?).

[January]

I, too, am so sorry you are going through this. I think Healing had some excellent suggestions and I urge you to find some support groups to help you through this. Be sure and tell your Dr how you're feeling. You can't be the very first person to have these reservations. I wish you the very best.

Jan

[gayleggg]

Teen Idle, I'm sorry about your pain and the fact that you will need a chemo med. I had chemo with a coctail of three different meds. They were suposed to cause weight loss but I didn't lose any, so don't worry until you see what it will do. Some are worse at causing hair loss than others. You can always wear a hat. I have wear scarves, wigs were too itchy. You want know what the side effects will be until you take. I hope it helps with your illness, then it will be worth it. BTW I've been cancer free for 11 years.
And they also have drugs to help with low immune systems.

[too SHy]

My favorite bro in law has something like this. He swears by a gluten free diet.

[Grey Matter]

Thank you guys so much.

Healing; A lot of the people in my life have left me do to my illness. It's "hard" for them and they don't want to see it happening. I have my partner, a best friend, my family, so I'll manage. It's hard finding support groups because Still's is such a rare disease. I am the only one in the RA practice with it currently. I wish there was a support group. I don't want to go to a cancer support group because it's not cancer, and I would feel so intrusive. I will look into it though for sure.

Gayle; I am sorry you had to be on chemo meds. I am chopping my hair off and donating what I can before it starts because OCD/hair pulling/skin picking wise losing the hair is going to be a huge trigger and speaking to my doctor, with the dosage I am on, it's something that's going to happen it seems. But hey if it doesn't, I donated hair in the end. Congrats on being cancer free!!

Too SHy; I don't like bursting peoples bubbles, but a gluten free diet is a lot of rubbish unless one has celiac disease. There was just a huge scientific study explaining how it does not much good at all unless one is allergic, etc. But if it works for him, damn, that's great. I am going to try and manage a raw food diet and see if it helps. Just hard to do when you're also anorexic.

[-jimi-]

I understand your fear but those meds can be better than just pred alone. What will they be putting you on? I kind of doubt that you will experience much of the typical chemo med side effects, some people deal with these meds well. If they give you that much, they are doing something wrong. They had my friend on Imuran, and even though she had to stop the med it was not for those reasons. (She got a rare side effect.)

There are new meds on their way, like anakinra, that more target the real issue. You are young, and if your illness does not go into remission, you will have a much better chance than the last generation.

Please take care of yourself.

[Grey Matter]

I am being put on methotrexate. As it is a rare disease, they are putting me on a high dose. That being said, not one that would target cancer. But I have spoken online to those with AOSD and a lot of them said the same things. The first 2-3 days after taking the medication, you feel sick, usually vomit, and have wicked headaches. And after those days pass, you feel good. But then those days happen again, as you don't take the medication every day. Only a few of those I spoke to lost hair, but all of them commented on weight loss, which is what is scaring me the most. I can't afford to lose weight at all.

[winter4me]

Take care of yourself...I don't know what to say, you are on a tough road, let the ones you have around you help...so sorry.

[aaronr01]

My cousins are fighters. One was diagnosed with cancer. The other had CF. The younger had had it since she was born and no one knew till she was 3. She is now 9 and has been in remission for going on a year now. I tell u she fought so hard. She never have up. The pain she went through. I'll never truly understand how she made it. But she did. My other cousin she's been fighting for 13 years. She just hit 13. The doctors didn't give her past 9. Just fight it. Believe in your self and see it through don't give up. Don't stop trying. I hope everything goes we'll and I hope you never give up.

[growlycat]

sending support your way. I've been on high dosages of Prednisone for different reasons but it is not a great drug to be on long term. If it is any consolation, I do know an older lady who is going through chemo who never lost her hair and never got nauseous. Hoping your side effects will be nonexistent. If not, maybe they can give another med to stave off the nausea.