Starting CTX and rant!!

[jsmith]

Hello all

Apolgies for laying dormant for so long, have had so much to deal with i went back into denial!

Since ive last been on here, ive had a bit of a nightmare trying to get this thing under control.

I started MTX and was on 60mg pred, which was all going fine, had another ct scan of my head, which showed a worrying amount of damage to my ears and sinuses, but i suppose this is to be as expected. I got some hearing aids tho after xmas and i can at least hear now, which is great :-)

As soon as my pred was reduced, 5mg a fortnight all symptoms just kept flaring up again, so we agreed to stay on 60mg of pred for 8 weeks, and as selfish as it sounds i am the size of a house!! i have put on 4 stone now since the begininng of this, i know there is more important things to worry about, but i am too embarrased to step out my front door now, i look awful!

2 weeks ago we started to reduce the pred again and yet another flare! so i have started ctx infusions last week :-( something that i was desperate to avoid.

I just cant understand why it wont behave itself and go to sleep, im terrified that it will never.

Im due to have 6 ctx infusions over the next 6 months, my question is what happens then, what happens if it flares again, the only thing that seems to control it is high dose steriods, which i just cannot stomach anymore, they make me seriously angry! and i find it so hard to concentrate, which is something i really need to do for my job.

I still dont have a wegs specialist, i started the referral process to addenbrookes, but have stuck with my rhumatologist, she has some experience with wegs but i am her priority, she also runs private and nhs so i can always see her straight away, she is very knowledgeable and asks lots of other doctors for opinions, i dont know whether this is good or bad but worry if i go to a bigger clinic, i would be a more of a number than an individual and would be waiting longer for help.

When do you think i will see an improvement with the ctx? ive heard it can take months before you notice an improvement?

Also how long am i looking realisticly for this moon face to disappear? i am looking a little too much like susan boyle for my liking!!

And during this time everyone assumes that your better, diagnosed, medicine, then you must be better. Help is dwindling rapidly just as i start to feel worse than ever, ive been suffering with this nearly 12 months now and it only just feels like im starting the process of being treated. I suppose this is the nature of the beast, im trying to relax and go with it, but sometimes its so darn frustrating!!

Thanks for listening, rant over :-) hope your all well

[annekat]

I took oral CTX and my worst symptoms started to clear up pretty fast... not right away, but within a few weeks. The daily dose took some getting used to but I'm happy I didn't have to go somewhere and get infusions. I've heard that the oral dose may be more effective, or more quickly effective, than the infusion dose. I'm guessing the infusion is used in extreme cases to really flood the system with a high dose of the drug, but I don't know. I wonder if the oral CTX might work better for you. I also understand you sticking with the rheumy you are happy with and wonder if she could consult with a specialist at Addenbrookes or elsewhere. A lot of people continue to see their local docs and just go to specialists once or twice a year. I don't know how it all works, for sure.

I would not expect the moon face to start to go away until you are down to 30mg. pred or below. Everyone is different, could even take longer. Sorry about that and the other problems you are going through!

[Pete]

I also took 150 mg oral cytoxan plus 50 mg of pred daily to start. The symptoms decreased pretty quickly - about 6 weeks or so. I was on ctx for almost 16 months (about 10 months too long according to the wegs specialist I started seeing last year). I was off immunosuppressants altogether for about two weeks before starting 15 mg/wk of mtx. I've been slowly tapering off pred and am close to getting off it.

I can empathize about the weight gain. While on high dose, I ate almost constantly. I regained the 25 lbs I lost at disease onset plus 15 more - all of it as belly fat. At lower doses (less than 20 mg), my appetite has decreased a bit, but the weight is still not coming off. Oh well, at least I feel good and lead pretty much a normal life.

Hope you feel better soon!

[HopeinTN]

I too was on oral CTX, and 100 daily. I was told that oral hitts it harder for some reason and that it's a better option with lung involvement. The worst part I noticed is the lack of energy that I'm used to. Well, aside from teh weight gain from Pred.

Good luck!

[marylz]

I've had 2 infusions of CTX so far. I'm pretty sure they decided to do the infusions to get things under control quickly. (I think I will have 6 altogether.) I'm also on 30mg pred. I was on 60, then 50 at the hospital, 40 for the first month, then have cut back to 30 a couple of weeks ago. I'm not sure if the CTX made me feel better or the pred. I know my lungs cleared out and I could breathe much better, but I am still very tired most of the time, my legs still hurt and have near constant face/headaches. And I, too, have a serious case of moon face! Sorry..I'm not being too helpful! I see my dr (nephrologist who is running the treatment in 2 weeks.) Not sure if I still hurt due to the decrease in pred or if the pred is causing it. I will find out.
Sorry that you are going through this after a year. I'm new to this disease and am still scared but dealing. There is so much I don't know but I do know that finding this forum has been a great comfort to me...to "listen" to actual people who are going through what I am dealing with has been a great relief.

[Meredith]

I was on CTX for a long time - at least 2/3 years, maybe longer. Never could stay out of remission long - sorry I don't have specific dates my husband keeps all the dates for me the more stress removed from me the better. I actually got off of Pred's for a while but did not last long. Finally my blood test was showing my white count being off and he pulled me off of it and immediately signed me up for Rituxan. Had 4 infusions (1 week apart) the first time, stayed in remission for approx. 18 months, no preds, second Rituxan treatment got 2 infusions. It has been 10 months and he is watching me closely, my tests are showing some inflation occuring. I started out at 10mg Pred's when I got my 2 infusions, now down to 5mg which he has kept me on. One thing he has done - approx. 3 months ago I was put on Liflutamide 20mg a day which he hopes will extend my need for any infusions. I have gotten to the point with this disease that I just go with the flow, I have tried to stop worrying about it. The weight gain bothered me for a long time, now I have 2 sets of clothes. One for when I loose 30 pounds and the other when I regain it. Hope you feel better soon. Get lots of rest.