Tapering? Illness? All n my head?

Hey everyone, been reading all the posts still last month or learning everyday! So glad to have found this forum!

I am posting because I am still on prednisone at 25mg, started at 70mg end of April and have been slow to taper following hematologists advice. I am awaiting a splenectomy but seems it could be weeks more. I know the splenectomy is not the preferred treatment by many of you but I do think it is what is best for me with some bone marrow abnormalities and a history of radiation that alters my risks for bone marrow problems. Anyways... As I await that I have to stay on the prednisone. I had tapered to 30 mg until I saw hematologist a week and a half ago, she said I could decrease to 25mg but then she really wanted me to stay on that until surgery as she doesn't want to have to end up increasing dose again as I am very symptomatic of the prednisone.

prednisone is awful for me, so many side effects and feel like I am going crazy. Moon face and weight gain fine but I have irritability, difficulty focussing, impatient with my 3 kids and husband and virtually everyone (bad road rage feeling even), depression, and out of control feeling. I sleep if I take Imovane but even with that not well Joint pain, pain in my abdomen by the spleen area and on the other side by the liver. I do feel like i am getting blood sugar swings but it isnt being monitored at all so it is all subjective. I also wake up with muscle cramps in my calf or foot a few times a night. I did the drop from 30mg to 25 about 5 days ago now and since then have had dizziness and extreme at times Almost debilitating fatigue. I wake up tired but get through the day but as soon as I lay down with the baby to grt her to nap or bed its like I can't get up...I napped several hours yesterday and today didn't nap but haven't been able to move out of bed for hours. I do also seem to have summer allergies or something with sinus congestion so maybe I am just fighting off something else? So confused. Does this seem related to prednisone? Would a drop from 30 to 25 mg do this? Is this just "normal side effects" to your thoughts or is this something you think I should phone the hematologist about?

Thanks for your time and thoughts!

Those all seem like typical steroid side effects to me. You sound like you are describing me when I went through it. I also had three young kids and it was a challenge. I used to give myself a time out when I felt at the end of my rope. I also worked full time too so I did not have trouble sleeping, I was too exhausted. Normal daily life was too much for me with the ringing phones, barking dog, arguing kids, any noise drove me insane. I still have a sensitivity to noise to this day.

Every time you taper, you can get hit with withdrawal and the worst of that is the extreme fatigue and weakness. Sometimes a person can become depressed, and that is a documented steroid induced side effect. Many of these subside a bit when your body gets used to the dose (usually just in time for another taper). None of it is fun.

Life will get normal again, I promise. There is a light at the end of the tunnel. Even if you do not end up maintaining normal counts, you will eventually find a way to balance ITP without horrible side effects.

Yes, I have experienced all that on a prednisone taper. It is awful! Hang in there! It is very hard to manage it all with taking care of your children too.

I had my splenectomy for a different blood disorder. But, I was also on 25 mg of pred right up to the surgery. They don't like to decrease a steroid dose near surgery. I remember right before my surgery I had tapered from 30 to 25 and I was a mess. Had so many of your described symptoms, even the road rage which is just not at all like me!

Anyway, try to do some things that make you relaxed, maybe ask a friend to help with your kids. I did that and found that my friend was so grateful to be able to help, it made her feel good too.

I am sick of pred too. Am only on 7.5mg but I am irritable and fatigued. I have some earache throat thing that won't clear up. I'm right with you in trying to not feel crazy.

Thanks Sandi and Dru! Makes me feel a lot better! Especially.knowing not alone and I was figuring was the drug but you do start to worry if something is wrong! I had a more relaxing day today and think i shall just plan to let myself relax when possible and to try stop the guilt...

I had guilt too during steroid times because I didn't want my kids to remember a crazy Mom when they grew up. What I did was spend time with them one at a time in my room when I needed a break. I couldn't take them en masse at times, so by doing one at a time, I didn't feel overwhelmed and they got quality time with me. It was relaxing and they got better attention than if I had been in the living room with the lot of them.

Thanks Sandi! Definitely makes me sad but happy that you felt that way... So sorry that you did but it so fits with how I feel! I missed their Disneyland trip earlier in the summer and just feel like the time we have together is not as i want it to be...so hard to stay patient and to enjoy time! I am trying some special outings and quality time with each of them and that has been great so far but do worry about scarring them for life with their crazy mom and her mood swings! I know how crazy I feel so can only imagine how crazy I seem! And Dru it does feel better knowing the road rage isn't just me... So not like me but all the time these days!

I think short bits of time.in my room may help when I can, a little tough at this stage as my littest is only 19 months so can't not have her with me but I have been taking g her to daycare even on days I am not at.work ocassionally to rest, clean the house or do something with one of the bigger kids... So kinda lucky for that...

Thanks for easing my mind as a Mom! All the things you don't really "mention" to friends and family! Not sure they would quite understand but reading your answer really makes me know it will be okay... It will pass and other moms.and kids have survived! Always could be worse! Thanks more then i can say makjng me feel better! Again!

My kids are grown now and they tell me, honestly, that they were barely aware of what was going on back then. They don't remember the bad times. They tell me that they only remember how much they made me run around all the time and they don't know how I managed it all. I felt like a raging lunatic but tried my hardest to appear normal. Apparently I pulled it off somewhat!

It is hard being a mom even in the best of times. My kids are all grown up too and they don't remember how crazy I was. Now they know just to give me some space when I'm on a high dose of prednisone. My son remembers when I had my splenectomy but only because my mother was staying with him and she put something in the microwave for way too long and it started a small fire, the fire dept had to come.

Thanks so much! That feels so much better hearing that! The stuff you worry about, especially when not sleeping! But funny what they do remember and how for sure! Having the fire department come would be pretty memorable! Can't imagine forgetting that!

Biggest blessing right now is when I feel grumpy or down now I have 3 little pick me ups which sometimes helps a lot! They see the joy in little things so well...

Yes, I know those prednisone induced insomnia worries well.

Enjoy your littles ones!