Advice on Horrible Dexamethasone Side Effects?

Hi All,

I am on day two of 40mg a day Dexamethasone. Yesterday was pretty good, I had a lot of energy, but was tired at the same time, and really hungry. Later in the evening I got a pretty cruddy headache and the worst heartburn ever. Depsite not being able to fall asleep till 3am, it was OK, not as bad as expected.

Today started out the same, I take all 40mg at 10 am. Lots of energy, but not as hungry, heartburn, and headache started a little earlier in the evening. I am exhausted but it's 10pm and I don't feel like I will be sleeping anytime soon.

About two hours ago I was laying down and started to feel like I couldn't breathe. My chest hurt, I was coughing, and my back was aching something fierce, still with the headache and heartburn....felt like my esophagus was on fire. Four Tums and that has eased. On top of all of that it was like I went temporarily insane. I was sobbing uncontrollably and pissed off at the same time. Now I feel much better, or as well as can be expected, sitting up helped a great deal and I have not layed down since.

I have two more days to go on this. I actually called the doc on call, who is not my doc and he told me to call my doc tomorrow morning to tell her about the side effects, but did say, in a not so emapthatic manner that they were common. What have your experiences been? Just as bad, worse, will it be worse tommorrow and the next day? Will it even work in the end?

Thanks,

Carla

You should be on a stomach protectant while on the dex. Try zantac 150mg once a day. They are available without prescription, and there are cheap store brands that are just as good. The chemical name is ranitidine. Most doctors prescribing prednisone also prescribe zantac. I'm not sure if the generally do so with decadron, but I found it helps. (I'm mom of an ITP kid, but have taken decadron for hiving and poison ivy before. I was on a very low dose, and had pretty bad side effects, with stomachache appetite, buzzy feeling, irritability, sweats, and pains in legs.) Some folks really swear by the dex pulses. I hope it does the trick for you. It helped raise my daughter's count nicely, but she didn't tolerate the rapid drop she experienced after, and we did it only the one pulse. Some here have said it triggered a long remission. I hope you are one of those.
Norma

Sorry to say those are the same symptoms I had. Insomnia, mood swings, heartburn, hunger but not really hungry, weird energy levels. Lucklily it's a short pulse. Withdraw symptoms are also bad for a few days after the pulse ends.

Carla - I think dex has a lot of side effects that vary for each person. It made my head feel a bit swollen and my teeth felt like they were throbbing. My cheeks also felt numb and my heart raced a bit. I have to tell you though to really take it easy on day 5-8 (after the 4 day pulse). The first time I did this I was so paniced about how I felt those days. It's withdrawl and I didn't have warning so it was scary. For me it meant a really bad headache, whole body fatigue and weakness, nausea, and dizziness. You'll get through it - maybe won't be as bad but just so you have a head's up.

Hey,

Thank you all for your replies. It was an interesting 4 days that's for sure. Yesterday was my last dose and I still feel like crud. It is not pleasant, that's for sure. I will def take it easy for the next few days. My body is still buzzing....I do not think I would like to be on a steroid long term one bit.

I went to the doc today for a platelet check and my numbers are up to 187!!!! From 36 on Friday, so I am happy, VERY HAPPY. She said they could fall again, but they could stick. She said sometimes that we have a to do a few pulses to get it to stick and sometimes that doesn't work and other routes have to be explored. I am hoping it sticks, but we shall have to wait and see. I am going to focus now on what I can do to make them stick. Any advice???

Carla

Hi Carla,
I did want to mention that I am 62 years old--so what works for me would probably be a lot different for you.
I had 4 Decadron pulses in the last 4 months. My last pulse was on October 15. So, I would say my platelets have been staying up so far (up past 300,000 for the last 4 months). I had the pulses 4 years ago and they worked for my at that time--with a 4-years remission. But, for some reason, this last time when my platelets dropped (all the way to 1000!) in July--it started out that the pulses were not working. I also had 5 treatments of IVIG with the last one being in August.

I didn't feel real good with the pulses--and after the last pulse--the crash is really bad. I could hardly get out of bed for two days! But, I'll have to say, that I am willing to toleratle these side effects if my platlets will continue to stay up this high. The doctor did inform me that he cannot give me anymore pulses--at least for quite a while--as it would not be safe for me. Unless I have a remission that lasts a while. Hope this info helps you some.

DeeDee

Thank you DeeDee, that was helpful to hear and I appreciate it. I am trying to remain very positive that when I go in next week my numbers have stuck and even gone higher! In June I was at 254 and had ALWAYS been at 250/350 until this started in Oct. I was so happy when I saw 187. I would have to say too that if the steroids continue to work I would deal with the side effects, even though they stink : ).

Carla

Good luck to you Carla. Like I said, the firt time I had the pulses (4 1/2) years ago, I went right into a remission. There's a good chance that you can get a remission too. The first time you get these pulses, the chances are very good.

I'm hoping I can get a remission too. I just hope that my platelets don't go back to 1000 again. At least for now, they have stayed up for 4 months--so I'm happy about that.

Dee Dee

Hi,

I'm on my second dexamethasone pulse and I've also had heart burn, upset stomach, sweating etc. during the 4 days of treatment. The harder part for me is after the treatment when I experience a few days of absolute fatigue and depression - almost like withdrawal symptoms.

But the most interesting side effect I get during the 4 day pulse is persistent hiccups! :laugh: All during the day (every 30mins or so) and I even find myself waking up in the middle of the night with hiccups.

I've been off the pulses for 2 months now and I still get the sweats whenever I am exercising. I sweat really bad. Then off and on I get real cold.

Dee Dee