I am Adverse to Pharmaceuticals and follow a holistic approach. My hematologist convinced me to try Dexamethasone since my platelets were at 17. ....what a mistake.
First of all I didn't know that it is 5 times stronger than prednisone. I was reluctantly open to try it because of the short 5 day course and low dosage of 12 mg/day.
At first I felt like Superman in terms of energy, appetite, and clearing skin. But within a day or 2 all that changed. I could not sleep for 3 days and could feel my resistance getting lower. Particularly I felt like I was developing pneumonia expelling brownish green mucous. Then I developed Diarrhea, fever, loss of energy and appetite. I was virtually lifeless and weak. It suppressed my natural immunity.
Anyone with experience or knowledge of Dexamethasone, can you please comment on or share similar experiences?
Warmest Regards,
Kevin
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My platelets were 7 when I found out I had ITP. They started me off with Dexamethasone for 4 days but I felt so poorly they stopped it and changed to prednisone 80mgs daily from July to December where I was finally weaned off, I was so dizzy with both meds and put on 2.5 stones which just refuses to shift but my platelets have settles at 103 at mo so I'm hoping that's where they will stay or get better,
I was on Dexamethasone for a 5 day course (12 mg a day), but it was so strong that I stretched it out for 7 days taking smaller amounts. Dex devastated my system: Inability to sleep for 7 days, after 2 days of having a animal appetite, I loss all appetite for a week, absolutely weak and drained after the second day, that and respiratory challenges, coughing up to a pint of mucous, darkened urine color, slight head tension, and a persistent cough. This has gone on while taking dex and after completing it. Prior to Dexamethasone I was strong and vivrant. Now I am pissed.
Dex devastated my system: Inability to sleep for 7 days, after 2 days of having a animal appetite, I loss all appetite for a week, absolutely weak and drained after the second day, that and respiratory challenges, coughing up to a pint of mucous, darkened urine color, slight head tension, and a persistent cough. This has gone on while taking dex and after completing it. Prior to Dexamethasone I was strong and vivrant. Now I am pissed.
I will not return to taking meds. My trust has been destroyed
Ali you are right. I will live with itp from this point forward or until things change. I have been a victim of doctors psychological pressure. I will stand steadfastly
You still have to see doctor just explain about leaving meds for now u might need something in future, I attended clinic once a year too get blood checked discharged last year after 26yrs.
Hi Kevin. I think Ali48 has the answer providing you are not a bleeder. I have had ITP for 20 plus years and for the last 10 have only taken meds when my count needed to be raised for surgery as two years ago when I had a quod heart bypass.
You can live happily on a low count as I have but be mindful to avoid dangerous situations and occupations where possible. You can always ask for a second opinion from one of the ITP specialists which you will find on the ITP Support Association web site under Forum. There are now 30 plus centres around the country.
I will concentrate on living with low platelets instead of repeatedly going through the psychological and physical tormenting of doctors, treatments, and toxic medications. I have no aspirations to be an A+ patient per labs/CBCs, while feeling like shit.
Quality based on how "I" feel will be first and foremost from this point forward.
Great, but only do this with the blessing of your consultant and the proviso that you are not a bleeder. Very good report from the best brains on ITP from USA and UK on the ITP Support Association web site. Print it out and give it to your consultant to read.
My doctor calls the drug Decadron, but my pharmacy fills the order with generic Dexamethasone. I believe these names are for similar drugs with the same cause and effect. My primary care doctor told me this is the most powerful of the steroids. Becuase it is so strong there is only a 4 consecutive day treatment and it stays in your system for an entire month. My Hemotologist chose to use this drug mostly because I am diabetic and steroids cause me to have out of control blood sugar levels. So the thought of only 4 days instead of long term Prednisone would be preferred. As for side effects of Dexamethasone, my hair follicles became sore, high levels of hair oil secretion, my vocal cords made me have a wierd voice for several days. My diabetic neuropathy numbness went away until the steroid wears off. My joints became sore and I seem to have pain in my right foot now when the steroid wears off. I am not sure what the cause of that is, but taking doses of Potassium seems to help with that.
Dex devastated my system: Inability to sleep for 7 days, after 2 days of having a animal appetite, I loss all appetite for a week, absolutely weak and drained after the second day, that and respiratory challenges, coughing up to a pint of mucous, darkened urine color, slight head tension, hand joint soreness, and a persistent cough.
This has gone on while taking dex and after completing it. Prior to Dexamethasone I was strong and vivrant. Now I am pissed and will never do this or any steroid again.
Wow. That really was a severe reaction Kevin. I too had much mucus that seemed to never stop and led to a month of bronchitis in February. I also noted the loss of appetite and wasn't sure it was the steroid or the bronchitis. I wonder how did your doctor respond to these bad reactions?
Anyway, I hope your back to your normal self by now.
Hi Kev I stopped meds 18yrs ago doc tried to scare me with what if's but I decided illness was better than side effects of meds nothing has happened docs are not always right because everyone's different
Twice when I've been admitted to the hospital with counts of 10, I was treated with dexamethasone (the first time in addition to IGG, which I couldn't tolerate, and the second time, with a platelet transfusion and Nplate). Both times, I was very sick and low for weeks, the usual sleeplessness and feeling like a roof fell in on me. Both times, after about 3 weeks, I had counts of over 1,000,000!!! I'm shocked I didn't have strokes. So, it "works" for me, haha. Unfortunately, I bleed when I am under 25, serious GI and posterior (unstoppable) nosebleeds. So now I'm pretty steady with biweekly Nplate. Thank heavens for health insurance...
I am curious to see if the devastation of dex was worth it. I get my platelets checked today. Glad it worked for you. Thanks for understanding the serious side effects of dex.
So glad you mentioned emotional toll. These simple things such as eating, rest, peace of mind, and comfort are priority to me. Dr's don't always appreciate this and that as a patient it is my right to deem itout important
My doctor told me that preventing a potential brain bleed trumps all of these quality of life factors. Huh?
I've had ITP for 20 years now, with a steadily decreasing count, and I do not take any meds for it. I've had steroids three times for a week each time; once for surgery, twice for a low count, and the last time it didn't work, and that's been it in the 20 years. I don't bleed, but I do bruise a bit.
I've learned to live with it, and it just makes me tired really (but this year so far I've had shingles, a severe Vitamin D deficiency and a horrid virus), and it's taken me ages to bounce back.
The medics are happy not to treat me...I go to the local hospital for bloods twice a year and my GP does one if I feel it necessary in between.
I thought potential brain bleeds were only if the count was <10k.
You mention brain bleeds, strokes when below 10 1993 count 2k 8yrs ago when I had blook clot 4k my blood fluctuates dramatically, i'm living a normal life
First ti me I tried it, I felt terrible, my heart was palpitating, sweating, couldn`t sleep. I only took a couple pills for two days when I needed them. I don`t take them that often, only when my count goes to five. All the best to you.
Well, we all know that ITP is very individualized in its path and how it presents in each of us. But reading thru this, your symptoms are very typical of steroid side effects.
I have had chronic ITP since I was 9 and I live somewhere between 20-100 count. Last fall after a round of heavy antibiotics I crashed to zero platelets. I have a great hemo doc who got them back up with decadone (garden variety name for dexamethazone or however they spell it) and of course I had to have some immumuglob because I was literally hemorrhaging under the skin to near death. I looked like one big massive hickey. No joke. It would be funny if it wasn’t so life threatening. I can look back in good humor tho.
We talked about prednisone vs deca and he is a fan of deca because it is easier to control. On and off without the long term adrenal gland down step required with pred. I was all over that idea. I had pred as a youth...no thanks on months and months of getting off that. I wanted in and out as fast as possible.
It became apparent we could drive my platelets up with deca (over 200) but in 7 days I was back to 0-5. Since that isn't sustainable, I did a once a week Ritaxan immunosupressant round in conjunction with 4 more rounds of short dose deca (40mg a day for 4 days, then off).
It sucked big time but it was a month and a few days after the last dose (which I shorted to three days because I was freaking DONE), I could feel it leaving me. It took probably 3 months before I was really getting back to normal, and 6 months removed now I am pretty good.
Each round I cycled thru some varying symptoms. Zits like a teenager, all liquid that tasted like metal, etc. And yes, no sleep and massive energy. I would get up in the middle of the night and go out and run. Wow, I totally know why athletes take steroids. Best. Runs. Ever. Of course after the last dose my muscles sort of seized up and the good runs came down to a halt. I was thankful to miss some of the common symptom that you had…gut issues, phlem issues and the ugly one… which is steroid rage. Yeah, that’s a think. it can turn the most mild mannered person into Hulk. This happened to a friend of ours last year. His wife almost moved out he was so verbally abusive. So color me happy to miss all that.
Mostly I just rode it out and didn’t fight it. My office is in my home so I had this luxury. if I was tired at 2pm, I napped. if I was awake at 2am, I worked. I knew it was short lived so I just embraced it, mediating (I mean as much as you can do when you are higher then a kite) on it working and my immune system rebooting.
Amazingly, it worked. Two weeks after my last dose of everything my platelets jumped to nearly 300 and have only trickled back to 250. It feels weird to have high platelets, and I know this won’t last forever. But the experience was a good reminder that my brand of ITP is drug driven. My normal diet is vegan, organic, whole foods and I live very clean and healthy. I triggered this with the antibiotics, which is what set it off in my youth, and I basically spaced off that I need to be careful about that kind of thing.
The entire experience meant I looked into the advances in knowledge in ITP and I have a good list of what I can and can’t take going forward. My neighbor is a researcher at the vet college and ITP presents in dogs also, the same way. So she is a wealth of info because the research crosses.
My chiropractor who thinks modern medicine is fraught with too many conventional drugs (100% agree) was initial like “WTF were you thinking taking that stuff?” but when we went thru it all, even he agreed that when you are pretty much bleeding out internally at the ER, you take what you could get. And it seemed obvious I needed some hard core treatment to reboot my system. Needless to say, it was all a wake up call. I am must more careful now. I don’t anticipate any of it happening again.
I am fascinated reading these boards the wide variety of treatments people go thru depending on their doctor and the differences between the UK and the US in treatment. Some doctors seem to freak out at a count of 30. That’s legit but since that is in my normal range, it doesn’t faze me at all. My hemo knows I prefer a pretty hands off and drug free approach to things. He respects me on this.
So yeah, deca sucks. But when compared to the alternative (death because I have no platelets or long term pred amounts as they decline) I would take it again. But I don’t think it is going to happen.
Thanks for sharing your story. It makes a lot of sense and your philosophy alingns with mine. I follow a meticulously healthy lifestyle and eating regiment. I actually work at Whole Foods demonstrating foods and nutrition. I have not taken meds for 30 yrs including prescription and over the counter prior to this incident with Dexamethasone. I have been vibrant for 30 years. I took dex just based on recommendation of my Dr since platelets were 17, though with no symptoms. I can't say that even in an ERIN situation would I ever take dex again. It was just that bad.
Now that the crazy has worn off, I can look back on it with a 'don't do that again you idiot' attitude. I am counting myself thankful and lucky (knock on wood) that I know what triggers a drop like that so i can avoid it.
If it was to happen again without a trigger....that would suck. And like you, for the first couple of months after it all, I was the same way....NEVER AGAIN. But the dust has cleared and I am not cray-cray anymore. And I can think clearly enough that EVERY TIME I have said the words NEVER in my life, it has come back to bite me in the butt. No joke...every time.
So it is one thing to say "I am just going to work to keep my own immune system healthy" and I will do that. But really, if I came up hickey like again with zero platelets....I honestly don't know what i would do. But history tells me to ban the word never from my vocabulary. So instead I just choose to live fully, healthy and appreciative of all of it.
I stand corrected on saying "never". Do Dex had Adverse side effects, and pretty significant ones, in dire straits, I will evaluate the situation at hand before taking it again.
By the way, I just left my hematologist. Dexamethasone did increase my platelets to 81. I haven't had platelets this high in 6 yrs. I guess it was worth it.
I've decided to become even more meticulous with my health and lifestyle.....organics, exercise. Meditation, proper rest, detoxing, clean meats, etc. I will continue to use naturopathy, accupuncture and a nutritionist.
I will only return to sterols when in imminent danger, but will take something less stronger than Dexamethasone.
Maybe I'll take prednisone and I expect that I will need a sleeping aid.....which I would normally never do, until experiencing not being able to sleep for days on dex
I would only do this in extreme situations. I am not much of a bleeder and platelets were 17 when I too quickly took Dexamethasone.
It did increase platelets to 81. I wish I knew for how long. Anyone out there who has experience on the expected length of the platelet bump?
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