Prednesone

[Bm939]

I am currently tapering off prednesone. I started with 75mg on August 15. I'm now on 30mg. My platelets took a slight dip from 101 to 92 this week. I'm trying not to let that get me down but it really does. I just want to be off the prednesone. I'm scared if my platelets drop I'll be back to square one. My body has because an alien to me and I just need to be off this stuff. I'm wondering what everyone else's experience with tapering has been.

[Notorious_IVIG]

I hear you and feel you! I was on Prednisone for about 3 months. Just like you, I started on 75mg and was tapered down to 30mg until I was off of it completely. Absolutely horrible experience! I felt like I was loosing my mind and climing up walls. Heart rate off the chart and could not sit still yet exhausted at the same time. Horrible! Would not wish it on anyone. This was about a year and a half ago and it feels like only yesterday. Prednisone is usually the first thing they administer after an ITP diagnosis along with IVIG ( which didn’t do anything for me either btw) It works great on some but not all. I begged and pleaded with my Hemotologist and her office to get me off that stuff. She eventually got me started on REVOLADE. Oh my God! What a difference. Now a days, my platelets hover over 70. My Hemotologist is happy with anything over 50 so I’m happy. You’re not loosing your mind. That stuff is horrible.

Be strong! You’ll be off that stuff soon!

[Esoteric in reply to Notorious_IVIG]

Prednisone is the drug from hell! I was suicidal for 3 months on it and I will NEVER take it again!!

[Notorious_IVIG in reply to Esoteric]

I’m glad you’re off of that crap! Thank goodness!

[Kazpig1]

I was started on a100mg of prednisone and I have to say it was terrible. I thought my heart was going to explode it was beating so fast I also lost weight it made me so unwell. I was tapered off it very quickly as I refused to take it. My doc has tried to get me to take it a number of times but it just makes me unwell. And we do not even discuss it anymore!! Good luck to you I hope the tapering ends soon

[Mpowered]

I’m in s 2nd round of treatment, having enjoyed 2 years of remission and normal counts. My doctor this round at least listens and works WITH me - my first doctor acted like I was insane when I shared my experience with #DevilPrednisone

I am at 20 a day and hope to be reduced next week. My big lesson learned is that I have to read and advocate for myself since I’m the one who knows what it feels like to go through this. Hang in there! You’re not alone!

[Steve5563]

Hi,

How is the tapering off going. I am on 40mg this week from 90mg where I started 6 weeks ago.

Im at the hospital next Tuesday 21st so interested as to what your numbers are at the moment as I dropped slightly from 70 to 50.

Steve

[Bm939 in reply to Steve5563]

Hi,

Well, the tapering is going slow. I'm now at 25mg. My levels had dropped to 92 from 101. I go for bloodwork on Tuesday so I'm hoping there isn't a huge drop. I can't wait to get off prednesone. Good luck with your tests. I'll post when I get my numbers Tuesday. Fingers crossed.

[Bm939 in reply to Bm939]

Blood work today and I am 108! My all time high! I am now taking 25mg. Fingers crossed level maintain as I continue to taper.

[Steve5563 in reply to Bm939]

Thats great news.

I have pretty much done the same dropped the dose to 40mg and my levels have gone up.

Starting on 35mg tomorrow.

Steve

[Bm939 in reply to Steve5563]

How's the tapering going? I'm down to 20mg. Blood work today and I dropped slightly,from 108 to 101. I drop down to 15mg next week.

[Steve5563 in reply to Bm939]

Good morning,

Thanks for the update and really good news that you are maintaining the numbers around 100.

This Tuesday I dropped the dose to 30mg and I am back for bloods on the 5th December.

The only concern is that I will hopefully be off completely during Christmas week and I just hope things stay up as don't fancy spending Christmas in hospital, although reading these forums it seems that most of us are managed ok from the outpatients department.

I'll post my numbers next week after the tests.

Happy 1st of December everyone.......

[wjoyful]

I was on prednisone for 3 months and my count never came above 60. I was weened off and dropped to 26 so I sit from 26 to 50 but not on any meds anymore. I have minimal symptoms so we just watch and wait. Most days I wish they hadn’t accidentally found the ITP cause I think I had it longer than 6 months. I didn’t know about it so I didn’t stress which makes it worse.

[carnes555US in reply to wjoyful]

I feel the same!! I was bruising a lot but felt fine in September, then had a routine physical and ended up in the hospital with counts 4K. Since then it’s been tons of tests with no answers, non-stop steroids, immunoglobulins infusions, promacta and now Rituxan infusions weekly. I’m exhausted , can’t sleep and ache constantly. Hoping this goes away and am down to 20 mg Prednisone with continued weaning. Wish they had never found it!!

[Bm939 in reply to carnes555US]

What are your counts like now? I've been on this prednisone ride for 5 months and my highest has been 131 but mostly staying around 100. I see my hemo this week and I'm hoping for more tapering.

[carnes555US in reply to Bm939]

Mine are hovering around 40, but waiting for the Rituxan infusions to start working. I get my 3rd one this week. Had to stop taking Promacta (which they put me on to quickly boost while tapering from 80mg down to 20), because of an allergic reaction they weren't sure where it came from. I HATE Prednisone (and Dexamethisone). I'm not myself and it isn't working. Its never gotten me above 80 :(. Sorry you are dealing with this too!!! I have no clue why or how I got on this ride, but its not been a fun one. I often wonder if NO treatment would have been the best choice??????

[Bm939 in reply to carnes555US]

I totally understand. I feel awful. My face is puffy, I've gained a lot of weight and now my hair is thinning. It's getting harder to stay positive about all this and yes I'm thinking no treatment might be better than this.

[carnes555US in reply to Bm939]

DITTO!!! Fat in places that shouldn't be....Sweating when its cold and freezing when its hot! I'm always a super positive person and refuse to let this garbage win!!! Hope you can do the same!!! Will let you know how the 3rd week goes....will start a new string to document the entire process. I'm just praying for 50K from here on out!! Take care!

[wjoyful in reply to Bm939]

I had thinning hair so I started taking biotin and it stopped falling out

[Bm939 in reply to wjoyful]

Ok that's good to know. I bought some biotin but then I was worried about taking it. I feel like I'm pumping so much into my body right now.

[Bm939 in reply to wjoyful]

Ok that's good to know. I bought some biotin but then I was worried about taking it. I feel like I'm pumping so much into my body right now.

[wjoyful in reply to carnes555US]

That’s what I chose. No meds and I sit at roughly 26 ish. The dr told me that my count could be more because the platelets stick together. So they could be 2 x 26 or 3 times 26. It keeps me calm thinking I might have more than they think lol. Happy New Year and I hope all will go well this year, for us all