Strange Cytoxan Side-Effect?

[txrepub4God]

Howdy ya'll! Greetings from the frying pan that is Texas in August. Last month my rheumy increased my Cytoxan from 100 mg to 150 mg because my C-reactive protein shot way up during my last blood tests. I had already noticed that I had alot of daily hair shedding, as I have very thick hair & noticed I was pulling out a teacup-sized poodle of hair a day. I haven't lost any large clumps of hair, just all-over thinning.

However, about 2 weeks after starting the higher dose, I began feeling excrutiating scalp pain, as well as losing even more hair. The scalp pain is so horrible that it leaves me in tears. I can hardly touch my scalp in the painful spots, & just the weight of my hair is severely painful as well. I'm praying my hair DOES fall out in clumps so I can more easily justify whacking my hair off to my husband, who likes me with long hair.

Did anyone else have this excrutiating scalp/head pain with the Cytoxan? Luckily I have pretty strong pain meds for my degenerative back condition, so that's helping a tad, but I've never experienced anything like this side-effect...it HURRRRRRRTS.

[Jaha]

That sounds like a good one to call and ask your doctor about. I don't recall having that side effect. How long have you been on CTX? I am wishing you all the best in getting a good answer to your question.

[txrepub4God]

Jana, I've been on Cytoxan for 3 months now, 1 month of which has been at the higher dosage. The rheumy is planning on me being on CTX for 6 months, then switching to azothiaprine for about a year. Unfortunately, I haven't noticed any improvement whatsoever of my WG issues, so I'm not sure if she'll take me off the CTX at month 7 or not. Guess it all depends on how my blood tests are looking at that time. I was untreated for my WG symptoms for 2 full years before it was definitively diagnosed by biopsy, so I had a lot of damage to various organs before treatment started.

That sounds like a good one to call and ask your doctor about. I don't recall having that side effect. How long have you been on CTX? I am wishing you all the best in getting a good answer to your question.

[Debbie C]

Hi Teri, I was on ctx for 6 months also and never had that feeling however I don't recall the dose I was on.. I don't think it was that high. Jana is right, you should tell the dr. what is happening. It may be to strong for you. You definitely don't want to stay on it any longer that you need too. Hope you feel better before you start pulling your hair out !

[Birdie]

18 months of 150 mg day and I had scalp issues the whole time. Nothing as bad as you're describing. I had more of a itching & burning sensation. Twice a day & very gentle baby shampoo, under cool water. Sweating made it horrible, wet hair sticking to my scalp... errrrrgh....

[greenjeep]

Never had this issue but I wanted to chime in because I have never met another weggie face to face and I think you are the closest person to me on this forum - that I know about! I'm in Lubbock, tx. Still 5 hours away, but in tx at least.


Sent from my iPhone while pondering the inevitability of a plurality of intersecting realities.

[txrepub4God]

Howdy to a fellow Texan then! My oldest sis lives in Amarillo. There are a few of us Texas Weggies on here. I think my closest one is Decatur. I see a rheumy at UT Southwestern in Dallas, which is about an hour from me. Thanks for saying hello! How long have you known about your Wegs? I found it myself, researching my own labs, about 2-1/2 years ago, but even though my old kidney specialist finally tested my ANCAs & had a pathologist agree that I had Wegs, he second-guessed himself & took me off all Wegs meds. Was finally sent to new specialists in December last year & re-diagnosed with Wegs in April 2015 after my nerve biopsy. Been on Cytoxan for 5 months, 1 more month to go. Also take prednisone & Bactrim. Switching to azathioprine in about a month, which I am way more than ready for! I haaaaaaaaate Cytoxan.

Teri

Never had this issue but I wanted to chime in because I have never met another weggie face to face and I think you are the closest person to me on this forum - that I know about! I'm in Lubbock, tx. Still 5 hours away, but in tx at least.


Sent from my iPhone while pondering the inevitability of a plurality of intersecting realities.

[greenjeep]

I was originally dxd in 2010. It was contained in me sinuses. Did oral cytoxan for 6 mos and got better. Went to methotrexate but never was able to take a full dose due to how it changed my liver labs.
Had a relapse in 2012 and went into renal failure. Did IV cytoxan for 2 years and I am now on azathioprine. You're right, much better than cytoxan. Still in remission, but just had a bout with kidney stones that messed up my kidney numbers. Hoping they come back down. Good to meet you. You found upbeat and happy. I tend to worry and still have a hard time accepting the lifestyle this has forced me and my family into.


Sent from my iPhone while pondering the inevitability of a plurality of intersecting realities.

[Birdie]

have a hard time accepting the lifestyle this has forced me and my family into.

Hey greenjeep,

I don't accept it, just keep laughing anyway. Can't do anything about it so what else to do? Cry about it? That don't help none.

Gary

[greenjeep]

Gary
Sounds logical, and easy. But I have to constantly remind myself of this.


Sent from my iPhone while pondering the inevitability of a plurality of intersecting realities.