Has anyone been treated with "Decadron"? (Dexamethasone)

[Lilly]

Hi Everyone, I have never seen the medication "Decadron" ever mentioned as being used for a flare. I have posted in other threads about a flare I had through Thanksgiving and Christmas, and it was a confusing situation because I was being treated by my Lung Dr and my Rheumy, and both were doing tests, etc. Because of the way my body reacts to Rituxan, my Rheumy will use it if he feels its a last resort, but I seem to have a very big dip in my immune system (which is normal) but one of the "great" things about Rituxan is that it will stay in your system for a long time....but since I was having lung issues, my Rheumy did not want to use Rituxan and risk causing my lungs to get worse. That's why he used Decadron, a strong steroid pill. It worked very well. But I want to know if anyone else has used this medication. Thank you, Blessings and much Love.....

[whatthewhat]

I have not heard of Decadron. I have a question, however - Cytoxan / Methotrexate / Rituxan / Azithioprine (probably misspelled) work differently than steroids, right? Are you saying that a steroid would replace one of those type of drugs?

[Alysia]

I have not heard of Decadron. I have a question, however - Cytoxan / Methotrexate / Rituxan / Azithioprine (probably misspelled) work differently than steroids, right? Are you saying that a steroid would replace one of those type of drugs?

At my acute onset, the docs I saw where ignorant about wg. They only gave me pred. I was on 60mg about 5 months and then reduced it for few more months. They didnt give me any immune suppressed med. A rheumatologist who took fortune for consultation said that since it is a "limited wg" (not in the kidneys) then pred is enough. We all know how wrong he was. Anyway, the pred did great work and cleared my lungs. But the wg continued to progress, moved also to my nose, ears and joints. So in my humble opinion, steroids are fine to clear inflamations but not to stop the wg's activity or prevent it from progressing to other organs.

[me2]

I'm not very familiar with Decadron but in looking it up I see it is a synthetic corticosteroid similar to prednisone. I don't believe it would be considered a primary treatment for a flare. My own understanding is that mostly we take steroids to buy time for primary treatment (immune suppressants) to work. I know my Rheumy is adamant that I FIRST reduce steroids before thinking about reducing primary treatment like Rituxan , Cytoxan etc. My understanding is that steroids are more dangerous than any of the primary immune suppressants.

Long term use of immune suppressants might cause certain side effects. Long term use of steroids is certain to be detrimental. I would insist on a consultation with one of the Foundation doctors to address this if it were me. Using only steroids for a flare is basically not treating the flare. If steroids could treat WG we wouldn't be using all these other meds. I've never heard of anyone getting remission using steroids. You want remission.

As in Alysia's case , the steroids will make you feel better and slow the damage (which is good) but it does not address the underlying disease progression.

[Lilly]

My doctor is now put me on methotrexate, oral, low dose for a month. I still take 10mg prednisone, I have never been able to get off prednisone completely, or I will flare. So I have been on it low dose since 1990. (I told him the Decadron had residual side effects that were horrendous-he looked like he did not believe me, but I kept a journal of it so I know I'm not crazy) So no matter what he thinks, I will NEVER take Decadron again...he said it was like prednisone but worked to suppress my symptoms much faster. It did that,.....then made me a crazy person for over a month. Since I have limited wegeners, I am very fortunate. But at the same time, I simmer, and never go into complete remission. And also my doctor has tried Rituxan several times, and each time, I take so long to recover to a normal white cell count, I will get lung or ear/sinus infections. I am now on a low dose methotrexate for a month, I go to see him Tues, May 22. I will see how my labs look then. Thank you for your information.

[Alias]

Dexamethasone is much more powerful than prednisone, I believe. I've seen it in the context of treating other illnesses in my family (like brain cancer) but I have not seen any other posts or articles mentioning it for treatment of GPA.

[Lilly]

Thank you for your reply!! That is basically what my Rheumy told me when I was showing inflammation and possible flare during the Thanksgiving Holidays....He wanted to try the Decadron, saying it was like very strong prednisone. It worked fantastic, in 2 weeks my symptoms were almost gone! So he began to slowly decrease the dosage, and that's when I started having horrible side effects! Unbelieveable! Crying all the time, afraid to leave the house, hands trembling so bad I could not write, brain zaps in my ears, horrible dreams, I actually noted everything I was going through in a journal. But when I went back for my next follow up, I was on the last run of weaning off and only had 2 pieces of Decadron left, then just back to prednisone. But when I told my Rheumy about the side effects, he really looked at me like I was crazy, and even added that he has never had ANYONE have side effects when they are reducing the dosage! I felt like a goof ball.....I had none of the crazy stuff happen until I was weaning off, so he just shook his head and said....."ok"....and went on with my exam. I told him I journaled everything, but he was not interested. So I just told him I never wanted to use that ever again. Thank you for the information!!! Its good to know. Sometimes we really have to do a lot of "doctoring" ourselves, especially since all of our wegeners can be so different. Take care! Blessings, Peace.....

[vdub]

Really late to the game here, but, yes, I was on Dex for about a month immediately after my pituitary was removed. I don't recall any particular side effects, but I was in pretty bad shape at that time and don't remember much of anything.

[Ebon]

I have to use dexamethasone because I cannot tolerate prednisone (literally, my skin tore) so whenever I get a cold they will put me on two or three days of dex so I can breathe.

[Lilly]

Hi Ebon, your post is very interesting to me. I have been on low dose prednisone since 1990. I am having long term side effects from it now, but you are the first I have heard of (I am sure there are others) that could not tolerate prednisone. This past Thanksgiving, my doctor gave me Decadron because it is stronger than prednisone, and my labs were showing I was beginning to flare. I also have taken Rituxan infusions, but it takes me a very long time to recover, so he decided to try this. I have no idea why I had such a strange post reaction when coming off the Decadron, but there are so many things about this disease that are puzzling, and sometimes even the doctors are stumped by how our bodies react to some meds. Thank you! I hope you are doing well, and appreciate your post, Blessings, Lilly