Advice sought: on four day high dose dexamethasone

[E-Lynn]

I'm about to start four days of 40mg dexamethasone. Any advice as to how to best deal with this drug experience would be appreciated. What should I eat, not eat, do, not do? I really don't like speedy drugs but I'm hoping this will knock my platelets back into line. I will take the ten 4mg pills with peanut butter toast this morning. Thanks in advance,

Lynn

[Belfastbees]

You should follow the directions of your prescriber, that you are asking makes me wonder have you've aquired these yourself? I hope a misunderstanding on my part!

[E-Lynn in reply to Belfastbees]

I am following the rules of my prescriber and my expert CLL team at Stanford in the US. I also asked him for an rx for atvian which he has done and I will use for sleeping. I was just wondering what others experiences have been. It could be this group isn't familiar with four days of Dexamethasone for frontline treating ITP .. immune thrombocytopenia. As I will be on these speedy pills for four days, I was asking if anyone has found life style activities that help get throught the speeded up nature of these pills. Food choice? I'm not drinking coffee and am drinking lots of water. So no, I am not self medicating. Dexamethasone is not my drug of choice.

[Davidcara in reply to E-Lynn]

Yes, follow your provider instructions. If you have a choice, take with food to help avoid upset stomach. If once a day dosing, take in the morning to help avoid sleeplessness at night. Otherwise, you may not even be able to tell you are in them.

[Davidcara in reply to Davidcara]

If you are a diabetic, make sure to check your glucose level.

[E-Lynn in reply to Davidcara]

Thanks. Yes .. I took this morning with food, my ten strangely shaped pills. Again, I only posted because in some cases, community shares "lessons learned" that are very valuable and may not be the sort of thing the pharmacist or prescribing doc would know to mention. I am a compliant, well educated patient.

[lexie in reply to Belfastbees]

I can assure you that E-Lynn is not that sort of person. She is very knowledgeable and was of great help to me when I was first diagnosed 6 years ago, on another CLL site. She guided me in getting a CLL specialist and her comments to others have been first rate.

[Belfastbees in reply to lexie]

I meant no offence, I can see from all the interactions since that I had, as I said I hoped I had, misunderstood her question. I don't feel an apology is necessary, but if you do I offer it unreservedly, and of course to E-Lynn also.

[Shepherd777]

My wife was on this, it was called "pulse steroid treatment". You should sleep well if you take them in the morning when you wake up. It really helped, but by the third day she felt like she was jumping out of her skin. The Ativan really helped to sleep at night. Definitely avoid caffeine as in coke or coffee. Her glucose went from 95 to 125. Expect to be a bit edgy until about four days after you complete the treatment. You might want to warn those you live with...although I never thought my wife was edgy...she thought she was.

[E-Lynn in reply to Shepherd777]

Thank you. I have had some experience with steroids from Gazyva treatment and also had to do a partial pulse some years back when there was thought that I had malfunctioning adrenals. I didn't and the dex really put me on the edge. And thank you for reminding me about the third day. Today, my first, hasn't been too bad but I know it can accumulate. And thanks for the reminder about the days after. I did no coffee today but did two squares of dark chocolate this evening. Tomorrow night, one square. My husband has been with me on my medical adventures for 50 years, so went through the adrenal rev up, the gazyva treatments which had some iv steroid the first several cycles until I asked not to have that unless needed. My fingers are crossed that one pulse series will do the trick so that I don't have to indefinitely get IVIG for these platelets. Thanks again for your input.

[LeoPa]

Peanut butter toast is bad for you. How about having some real food instead? For example air fried pumpkin or squash on low heat if you like a little sweetness.

[PaulaS Volunteer in reply to LeoPa]

LeoPa, I don't see any problems with peanut butter toast. I have some most days, as well as a wide variety of other things.

Lynn, I have a friend who had to have steroids for a while and would echo what Shepherd777 has said. He became very hyperactive. Good that your course is only 4 days.

Wishing you all the best. I hope the meds will do a good job and improve your platelets.

Paula x

[E-Lynn in reply to PaulaS]

Hi Paula. Nice to hear from you. After I posted, I saw LeoPa's profile and realized he was a nutrition nerd or geek or whatever. Yes, I am concerned about the hyperactivity. I know I would have a hard time with a longer cycle and fear that even four days plus the crash that comes after will be no fun.

[LeoPa in reply to PaulaS]

Toast equals carbs overheated. On many cases even burnt. During this process carcinogens and advanced glycemic endproducts are created. Peanut butter is inflammatory, contains too much omega-6 oils. It can contain trans fats and peanuts are often times contaminated with a dangerous fungus the name of which I don't remember now. In short, it is a processed food and all processed foods should be avoided.

[E-Lynn in reply to LeoPa]

I was looking for protein that I had in the house. My peanut butter is a healthy variety and tomorrow I may have it with banana on top. My bread is acme walnut levain, a great bakery. Sorry .. I am in the city and don't have easy access to fresh vegetables in the next few days, plus aren't you suggesting carbo? Dexamethasone requires something in the tum. I may just boil and egg and have it on the side with granola and fat free milk. As you can tell, I'm not vegan though I guess you might be.

[LeoPa in reply to E-Lynn]

😄 I'm as far from a vegan as one can be. If you check my profile you'll see. A few eggs are definitely a much better source of protein than peanut butter.👍

[DancinGal]

You might consider asking your doctor if it's ok to take an over-the-counter antacid if you experience heartburn/indigestion. That happens to me with even 2 mg dexamethasone. Avoiding food before bedtime and sleeping with your upper body elevated (like with a wedge pillow) helps prevent it, too. Best of luck to you!

[E-Lynn in reply to DancinGal]

Thanks for you advice. I've been on a fabulous gerd / reflux drugs for several years now .. Dexilant. It really has protected me from all variations of acid reflux. It is very pricey so I have the contact info to get it from a Candadian pharmacy.

[neurodervish]

Hi Lynn, I've seen a lot of great advice from you over the years on cllforum.com and am impressed that you still reach out for advice. It's a testament to your openminded willingness to learn more.I think you're smart to get the Ativan. I did 6 months of Gazyva and, after 4 months of begging for a reprieve on the steroids, managed to skip them for the last 2 months. I found that stretching before bed also helped (especially with restless leg syndrome). The best advice I received was from my pharmacist (owner of the pharmacy). He was the one who suggested the Ativan and my (our) doctor agreed to prescribe it.

Sending you best wishes for getting through all this asap!

[CoCoLuna11]

I hope this revives your platelets Lynn! I’d be happy to send you some Strawberry jam to go with that peanut butter!😘 Misty