Arava

[sam101360]

Good Morning:

I have been having worsening arthritic symptoms over the last year. We tried Methtrexate and it made me very ill (naseau, fatigue, etc) so we switched to Imuran. The imuran brought about many CNS like symptoms (bad brain fog, disorientation, memory loss & paranoia) so we stopped that too.

We waited a few months for everything to reurn to Lupus Normal and yesterday we started Arava. I am taking 20mg a day. My Rhumy said that I might not feel any change or improvement for 4 - 6 weeks, he said I might not feel any worsening in current stuff after 2 - 3 weeks. He said I might be a bit more tired while my body adjusts and that I probably would loose most or all of my hair.

I was just wondering if any one here is taking this med?
what your dose is?
what did you see as side effects?
how long did it take until you started to feel any positive effects?

I guess, you know, just need some reassurance that this could be the solution.

Thanks so very much - Stephanie

[Clare.T]

Hi Stephanie style_emoticons/<#EMO_DIR#>/smile.gif

I hope it helps you and I am so sorry you have such trouble getting symptoms under control. The one person I know of who takes Arava successfully is away for the next few days and I'm sure she'll reply when she's back.

Meanwhile have you done a forum search ?

Hugs

Clare

[sam101360]

Clare:

Thanks for the kind thoughts. I have done a search and read what was out there. I guess I was just looking for some personal comfort...lol

I guess this is getting to me just a bit and I am a little down that I had to go to such an extreme medication and I am not even sure that it will help. I wanted to see if I should start wig shopping (I love my hair...) as the Dr said to expect extreme hair loss.

Hubby's great but he's as nervous as me about this medication.

Thanks for your support - I love you - Stephanie

[sam101360]

I have been on this medication for 2 weeks and I must say I see no difference.

This is a good thing I think....

I am not getting naseaus from the medication.
And although I am having some minor hair loss, it isnt too bad yet.
I am a bit more tired than usual, but it's been pretty hot here so I don't know if its that or the med causing it.

I am still wondering if anyone has any idea how long this will take to start to help (if it will even help)? I am still getting new areas of arthritis, so it doesn't seem to have stopped the progression yet.

Any feedback would be appreciated.

Thanks - Stephanie

[sam101360]

Terri:

Thanks.

I am on it because I have been unable to take Methtrexate or Imuran without terrible side effects.

I have SLE and SCLE no RA.

Has this drug helped with the arthritis?

Thanks - Stephanie

[raggedyann1]

Stephanie,

I have been on arava for a little over 2 years now. I take it with methotrexate. I was also unable to tolerate imuran. I had some mild hair loss in the beginning. My rheumy told me that any hair loss I would experience would only occur in the first 2 months. It took longer than 6 weeks to really start working for me. At 8 weeks my doctor was going to switch me to enbrel but I was having female surgery and he didn't want to add or change any meds till after the surgery. At the 12 week point we could tell it was making a difference for me.
Arava can cause diarheah but with my other meds in med cocktail the arava helped swing me to normal bowel movements.

Hang in there.

Karen

[sam101360]

Karen:

Thanks! I am seeing the Dr on August 10th unless something happens. He already decided that if this doesn't work we will need to fight for me to get Rituxan. That will be a very hard sell with the insurance company as I am ANA negative, so I am really hoping for success.

The hair loss seems to be the only side effect at the moment, I have curly hair so it is a bit less noticible, however I did go to my stylist and have it shaped a bit so its not too bad...I really dont care about te hair if the pain goes away...

Thanks again, you and terri have made me feel better about this.

Stephanie