Dexamethasone

[majorindy]

Has anyone been prescribed Dexamethasone. If so what were your results and side affects. I have read that after the initial dose you don't take it again for two months. My hematologist says he will prescribe this for me if my platelets drop below 30,000. Lowest I've been so far is 36,000.

[Robert1959]

My understanding is that Dexamethasone is given as a 4 day course and that is how I was treated. I have read that it is 4 times as strong as Prednisone and we all know how that drug can mess you up but I honestly don't remember it as being too much different.

I was given Dexamethasone after my 4th dose of Rituximab and my count came in at 0. Unfortunately the Dexamethasone did not make any difference to my count and it was then onto NPlate as my next course of treatment.

[majorindy in reply to Robert1959]

Thank you for your reply.

[Loriga1 in reply to Robert1959]

My son was given it as a mistake and it caused varicies in his esophagus! We thought he was in end stage liver disease. Then an intern recognized the medication mess up. We stopped use. After 6 banding sessions and now two and a half years later no more varicies and he is off all pharmaceuticals. He was diagnosed with autoimmune hepatitis. His platelets have remained in the 60-70 range. So stressful to consider medication again.

[nicoleeeeeeeeeeeee]

Hello! I was prescribed with dexamethasone. I will give you really puffy face, you'll always feel hungry, insomnia, mood changes.. My plateletswent normal when I was in high dosage (10 tabs/day) but now back to being down again. im still on dexamethasone now 1/4 tab every other day since im weaning off the steroids and just taking sime vitamins

[Pollyangel]

Hi... I was prescribed Dexamethasone when it became apparent Prednisone wasn't having any effect. It kicked the living daylights out of me and after 6 pulses of treatment... it made no difference to my platelet count (count was great when taking the drug... dropped dramatically when I took my 10 day break).

I was so glad when my Haematologist agreed not to prescribe another pulse...

That said... it may work for you... you just need to try it and see.

Good luck!

[Lin6]

I was put on it when they first diagnosed me with itp. My count was 7, I had such a bad reaction too I only had been taking it for the 4 days on 4 days off they changed me to prednisone for 6 months instead. My count has gone up and down but for the past year been just over a hundred with no medication. I have my next appt on Monday 🙏 all will be OK.

Good luck to you hope your treatment works too, we all react differently to these meds If you do have to try it it could work for you,

[Bean195]

I was given dexamethasone in combination with rituxan. It did the trick for me. Platelets have been in healthy range for over a year now. The side effects are tough but it was given as a pulse treatment (once every other week for 6 weeks). Best of luck to you!

[SueGilbo]

I was on that for 4 days, 10 pills a day, which was only like 40mg maybe I can't remember exactly, then off for 2 weeks and back on.. doing that cycle for 2 months. Platelets went up so did my weight. Coming off each week it made my heart beat funny. Doc said it wasn't from them, but each week I was on them and stopped them they same feeling happen. My platelets did go up from 4,000 in the hospital to 140,000 with steroids and 1 IVG treatment. Taking b-12 daily too. So far 165,000 after 1 yr. Just a wait and see game. Good luck

[Paul581]

HI majorind, while I have a problem with long term steroid use due to side effects I had no problem taking high dose dexamethasone for 5 days as my platlet count was 15K. I took the drug, no side effects, my platelets dropped to 10K, than IVIG no response or side effects; 4weeks of IV Rituxan no response or side effects ( platelets drooped to 5K requiring platelet transfusions) and finally Nplate which was approved in 2008 with excellent response. I've been on Nplate since 2010 which requires weekly blood draws and injections of 650mcg Nplate to maintain my count between 50 to 80K, a level that provides me with good quality of life. I still must be careful to avoid injury so no sky jumping, or auto racing but that is a small piece to pay for life. Be well, learn as much as you can about your disease so you can be an active participant in your care. Check out mayoclinic.org for information kyriak51

[Paul581]

Hi majorind kyriak51 here with a correction: I had a 4 day course of dexamethasone not 5 days, sorry

[technogeek]

Yes, because I am diabetic, the doctor chose to use Dex instead of Prednisone due to the time needed for me to be on the drug. Any steroid makes blood sugar skyrocket. So instead of long term Prednisone, a brief pulsed method of Dex was used. The pulse was realized by 4 consecutive days of 40mg doses daily. And then none for the rest of the month. In terms of ITP, it did keep the low platelet count away for the month and then some. Side effects were crazy. There was a brief period my hair follicles became highly inflamed with an increased secretion of oil. Initially not noticed, my joints became inflamed and felt lots of pain when moving. There was a highly noticeable loss of muscle and strength along with muscle soreness. Essentially my immune system had a difficult time adapting. My plaque psoriasis suddenly went away. I cannot remember if there were other symptoms. Since my last Rituxan treatment, I have not had any need for steroids and that has been many months.

[ellaco]

I have been on Dex for 3 months 25ng three times a week along with Nplate . Side effects for me is moon face, and I have suffered a lot with low blood sugar. I feel constantly hungry but resist eating to much as I already have an issue with my weight. I have sleep problems and have joint pain but I had that before the ITP ISO unsure if that is a side effect . On a positive note my platelets have increased , and apart from having a throat infection when my count dropped , it has been increasing slowly and steady , in fact before the throat infection it hit 120 highest it has been since diagnosis 20 months ago.

[Ali48]

I had a very rare side-effect pencreatitis but platelets went up.

[nicoleeeeeeeeeeeee]

Hello. My doctor also prescribed me same medication but the side effects waa really dreadful. Like at night, I cannot move due to a sharp pain at my back. She gave me 10 caps per day (so I think 10 mg each) for 4 days. My platelets was 50++ then it raised to like 130++. When she knew the results were good, she prescribed me to have 1 cap per day until I asked her to stop because the side effects still so hurtful.