Hello Everyone - Newly Diagnosed!

[Sangye]

Hi Emma, welcome to the group. I'm so sorry for what you've gone through. Mine began with the joint pain as well and progressed like yours. Unbelievable how bad it can be, isn't it? The prednisone and cytoxan (ctx) will soon take care of that.

The others are correct that the ctx will only thin your hair, though the degree can vary widely.

The best advice I can give you is to find a Wegs specialist asap, even if you have to travel to one. They may not change your treatment plan but they will make sure it's the best for you, monitor you for any changes (Wegs can be full of surprises) and give you lots of good information. It's very common for non-Wegs specialists to overtreat or undertreat. Wegs is very unique.

As far as weight gain from the pred, I suggest you do anything you can to avoid putting on the weight. I didn't know pred caused it and thought I just needed the extra food because of the chemo. It is often much harder to take off that weight than usual since pred changes the metabolism.

[NicShaf]

Emma,
Welcome to the group! I'm glad to hear that your Rheumy got you all figured out and you're on your way to recovery.

I totally get the hair thing, but as I understand it, it is only about a 50/50 chance that you'll lose your hair. That is great that you have such a supportive friend.
Something that put my mind at ease was that my mother-in-law has worn wigs forever, and I was with my husband for probably about 5 years before I ever knew, and the only reason I found out was because she didn't know I was there and walked out of the bathroom without her hair on…she probably could have fooled me for longer than that…my point is, nowadays, they make awesome wigs that look great, so for a temporary fix, no one would even know it was a wig.

Best of luck to you, I hope things continue to improve.

[ArlaMo]

Hi Emma! Welcome and sorry you had to meet us all this way.
I totally know the eat-everything-in-site feeling. Been on pred for just over a year and hoping to taper in about three weeks!
I did lose quite a bit of hair with the ctx, but I think I'm pretty unusual that way. Mine has started growing back - about 1/2-1 inch long now. My husband keeps trying to get me to dye it platinum blonde or pink!

[Red]

Hi Emma, everthing wii get better i am on IV ctx and pred 5th treatment felt a lot better think positive ,be strong, i am trying its hard side affects of chemo not bad yet, nausa , no hair loss .

Your health will improve .



Brad

[vdub]

Wow, you have had a bad go! Over the next few months you will experience all sorts of different things and often times you won't know if what you are feeling is a side-effect of the many drugs or just another part of WG. Although everyone's experience is very different, you can usually ask and get a good idea of what is going on. Sooooo, keep in touch and let's hope everything gets better real fast.....

[Psyborg]

I will add in that I didn't actually lose significant hair with the CTX. It thinned slightly, but most of it has come back in the months since I came back off. Accept where I was already thin in the first place...Oh the joys of being middle aged