Newbie questions...

[mnsnyl]

hello everbody, Im a 20 years old girl, dx SAA 3months ago. I had ATG on 15th july and since then I have been using using 250mg sandimmun neoral and 16mg prednisone. As I'm fairly new I need your help. Firstly I have a very swollen face, is it because of prednisone? if so does it go away when I stop using it?
Also ı have another big problem with my hair, even on my cheeks lots of hair is growing, what can I do for them? and the low number of wbc can be the result of cyclosporin?

Im looking forward to learning more about AA. Thank you...

[rschem]

I was DX saa 2008/08 .I have been on cyclosporn since Sept 2008 .I have noticed alot of hair growth the first 6 months to 1 year.I have been on it over 2 years now and the hair growth seems a lot less.One of the side efects of pregisone is moon face.I was only on it for 3 weeks.Good luck with your treatment.

[Lisa V]

mnsnyl, you may be new at this, but it sounds like all of your assumptions are correct. The swollen face is almost certainly from Prednisone, and will go away as soon as you taper off of it.

The hair growth is most likely from Cyclosporine. I'm not sure what you can do about it as long as you're still taking it, and it is recommended not to taper off it too quickly. I suspect the low WBC may be related to this as well, as that remains my husband's lowest count (he's still taking a low maintenance dose). It is only targeting the lymphocytes, however, so it shouldn't affect the neutrophils. As long as your ANC is good, you should still be protected from most infections.

[Hopeful]

I don't think Cyclosporine causes a low WBC. It is my understanding that Cyclosporine interferes with T-cell communication but doesn't actually remove the T-cells. (T-cells are lymphocytes, which are a subgroup of WBCs.) My WBCs are almost normal, and I am taking Cyclosporine.

Your marrow may still need time to recover with regards to WBCs. How are your other counts? Have you shown any response yet?

Are you tapering off of the prednisone? 3 months seems to be a long time to still be taking this.

With regards to the facial hair...It seems to come and go while on Cyclosporine. I shave it off and it does not grow back black! It also doesn't grow back fast.

Good luck!

[mnsnyl]

Firstly thanks for your answers.
My counts are; hgb:7.6 is stable for the last one month so I don't get transfused, plt:30, wbc:1.8 and anc:1000.
We tried tapering off prednisone but my counts immediately fell down so Im still using it.. I really don't know when I can get rid of that medicine
Also at nights I wake up with an unbearable pain in my stomach. Previously I could subside this pain by eating some biscuits but they don't work anymore. What can you suggest for it?

[SNichols]

We are in about the same place. I was diagnosed first of June SAA. ATG treatment was the end of July. Came home from hospital taking 950mg of cyclosporine (skunk pills), it is now at 300mg yeah. Prednisone was at 20mg then up to 60mg to fight off serum sickness, (worst pain ever). Prednisone is now being cut back slowly to 30 mg. I noticed the fluffy body quickly, not just face. My belly is so puffy my lower back hurts. My nails and head hair have grown quick and strong yeah. The hair on my face ugh. I tweeze everyday, trying not the tremble another side effect of prednisone. There are razors made for women that really aren't shaving just removing the black ones. These small blade razors are found with the nail files, and tweezers in store. Indigestion, mouth feeling like it was on fire, tingle and burn on palms and bottoms of feet is from cyclosporine. I take meds. then eat and then sit for sometimes up to an hour before all the side effects go away. Tums helps late at night. My Dr. says the puffy will go away and the black hairs will stop growing when I am off prednisone.
I am excited I made my own blood last week.
wbc 4.4 rbc 2.80 platelet count 90 yeah that is an all time high for me
Best wishes to you. Keep in touch.

[mnsnyl]

Your counts are great, happy for you What you have written are EXACTLY the same for me.. Additionally my arm muscles have become tougher than a sportman's,they really hurt and also I feel my legs are very strengthless I hope as soon as possible we all can get rid of these stuffs with the best results. Take care.

[SNichols]

Will be off all prednisone for the rest of this month. I hope for ever. Can already tell my face is becoming normal again. There is still some hair but not as much.
Am trying to exercise more to build my muscles back.
Still taking 250 mg of cyclosporine daily. I am use to its side effects. My life schedule is returning to what it was before I was diagnosed.
Let me here from you. How are your levels. Suzie

[Neil Cuadra]

Suzie,

Does that mean you are no longer having heartburn or stomach aches?

[mnsnyl]

Im still using prednisone 4mg, when I taper it off my levels fall immediately so everytime the dose was increased there is still not much improvement, plt hanging around 30s, hgb 8s, wbc 2s. I had BMB last week, and according to the result this week we will discuss the next step, whether to have second atg or to undergo transplant.My hemo said that if I have at least %30-40 cellularity, I won't need transplant. by the way my cellularity was less than %10 at diagnosis.

Hoping and praying all comes back normal for all of us.

[Ryan Jay]

Hi there:

Keep up your spirits. That ATG/CSA is rough but it can work really well. I had it back in August and this is where I was and where I ended up:

WBC ANC HGB HCT PLT

As of 9/3/10: 1.5 400 7.0 20 13

As of 11/11/10: 3.7 2,200 10.5 31 58

My last PLT tfx was 9/20 and PRBC was 10/6.

Needless to say the doctors are very optimistic.

Anyway, I had a huge ANC plunge after the steroids. Maybe that's what you are dealing with.

Cyclosporine is a different ballgame for me. I had a huge bald spot that has almost vanished since taking it. That's nice, but I look like a gorilla otherwise.

I hate to be a post-hijacker...

Just a question. My CSA trough was running a little high (300+) and my creatinine level was starting to drift up. The Dr. cut my daily CSA intake from 400 to 200mgs. I am a big guy. 6'3" 250 lbs.

Does this sound legit to you? I thought it was a pretty big chop all at once.

CSA is like a security blanket.

[mnsnyl]

Hi Ryan,

Once I read that the level of cyclosporin doesn't immediately decreases when you taper off it as it takes long time to built in your system. Though, cutting it from 400 to 200 is a little bit fast I think. But maybe you will continue to take 200mg till your creatinine level becomes normal.

By the way according to my BMB, my cellularity is %3-4. I was really disappointed because, I was waiting more, as my blood levels are higher than the ones at the diagnosis.
My levels at diagnosis: HGB: 6 PLT:17 Neut: 0.5
Today's : HGB:9 PLT:37 Neut:1.3

I really didn't understand how I can make my own blood with such a low cellularity:S

Any input would be appreciated.

[Lisa V]

Ryan, how high did your creatinine get? That does seem like a fairly major reduction, particularly given your weight. The only reason I can think of for such a sudden cut is if either your creatinine or blood pressure had gotten dangerously high and they wanted to bring it down quickly, or if you were having some other sort of adverse reaction. The blood CSA level in and of itself doesn't necessarily warrant that, as the guidelines for therapeutic level are so unclear.

Still, at 200 mg you may be okay. It may just be a temporary reduction until things settle down. I'd ask the doctor about it.

Ken was started at 900 mg/day (!!!) when he got his first ATG. I don't know why so high, he weighs about 180. They cut it to 500 after about a month, and then to 200 a month later. His CSA level was 885 and his creatinine had shot up to 2.2 so they needed to bring it down quickly. That was fine for a while, but even then it started to creep up again. At that point a simple 25mg reduction was enough to even things out, and he's been maintaining at 175mg/day for the last few years. You just have to find that right balance point for you.