Prednisone for beginners

Hi Everyone,

I am from Sydney, Australia and only joined in recently having found this website so comprehensive and helpful. My platelet counts have been in their low 20s for about 8 months now but only recently I found out that what this means is ITP. During my last visit at the hematologist he prescribed me Prednisone (50mg to start with) but I haven't had the guts to start taking it yet. I know it causes a range of side effects and I have read many posts in which other ITP patients were hating them. Can you please run me through the side effects in a bit more detail, especially with higher doses? I know it varies from person to person but I'd like to know some examples - how does it make you feel? What is different when you're on it? How quickly did you start noticing the effects after taking the first dose? What did you notice first, how did the effects change and develop over time? How do you cope with it in your day to day life? How can you alleviate the side effects? Some detailed information from your experiences would be great. In the meantime I will keep the prescription put away safely in my notebook thank you! Ania

Hi Ania,
If you have had a stable platelet count for 8 months with no significant bleeding (and that's what it sounds like from your post), I would hesitate to start prednisone. Maybe something has changed that your doctor is now suggesting it.

I had mood swings, trouble sleeping, gained 20 pounds, got stiff in the muscles, and have permanent stria under my arms where the skin stretched from the intense sweating. I tapered down from 60mg -0mg over a 5.5 month period. Prednisone ended up not working very well for me, with my platelet count jumping up and down even with a slow even taper. I woundn't take it again unless my condition was life threatening.

Ania:

Prednisone can turn life topsy turvy for a while. I still went about my normal routine, working full time and taking care of three kids, but it became a bit more difficult. My advice is to keep life normal and don't take yourself too seriously. Many of us have funny Prednisone stories, so try to see the humor.

On high doses, I had problems concentrating, hands shook, couldn't speak coherently, had sensory overload (especially sounds), felt wired, loss of taste, mood swings, blurred vision, increased hunger. As I tapered, I experienced extreme fatigue, muscle weakness (jello legs), joint and muscle pain, depression, feelings of detachment.

It can take time to get back to normal even after stopping the drug, but there is a light at the end of the tunnel. I did get three treatment free years from it the first time, so sometimes it is worth it. Some people do well and do not experience many side effects, so you might do okay. Staying active is best because it keeps you in better physical shape. Try to avoid salt and sugar as much as possible.

I have been on prednisone many times since 1999. I get the side effects likeSandi mentioned, trouble concentrating, blurry vision, sensitive to sounds. I am on 40 mg now and very hyper. I am getting a lot of housecleaning done. I noticed my husband and grown children avoiding me... Think I am inpatient and not my usual self. Here are some things that help me:


1. Take ranitidine or Pepcid, some kind of over the counter antacid. Helps prevent stomach problems and I think too helps with hunger.
2. I ask my doc for rx sleep meds for the first few nights and then stop that as I taper.
3. I concentrate on eating healthy foods. Pred gives me high blood sugar so I eat low carb lots of veggies etc. I have never gained any weight on preds.
4. Plan some relaxing activities, for me I like some mind numbing tv shows.. Lifetime movies, romantic comedies.
5. Avoid as possible annoying problems like sitting in traffic, waiting in long lines, talking to In-laws (lol).


Sandi is right about the humor too. I remember a funny story she posted a long time ago, and many other people have them too.
Some people do fine with few side effects so that could be you as well.

Dru

I'm one of those lucky people (I guess lucky few) who have had few bad side-effects from prednisone. I've never stayed on big doses long--and I consider 50 a big dose. My hema has had me taper whenever it was necessary for me to have a big dose (when I've dropped into the single digits, he usually has me go to 30 mg/day, then begins tapering as soon as the the platelets go up). I respond fairly quickly to prednisone. The only bad side-effect so far has been insomnia, when I've had bigger doses. I take all my pred in the morning to help with that.

I worry about long-term effects--like bone density. So far, I've been spared all of that. I've been on prednisone for most of the past 12 years--but usually on low to fairly low doses.

I eat a low-fat, low-meat, healthy diet and exercise regularly. I've not had the Cushings Syndrome or weight problems. The prednisone, when I've had moderate amounts, has helped my arthritis. I know all this could change, but for now--it's been okay.

Maybe it would be okay for you too!

Thank you all for your responses, it gives me now some idea of what to expect and how to cope with the potential side effects creep in.

My counts have been consistently on their low 20s, between 20-26k although I haven't been monitoring them too closely for the last 12 months. During my last visit at the Hematholofist I mentioned that my husband and I are planning a baby in the second part of the year plus we're going on an adventure holiday to NZ with white water rafting and other potentially risky activities so that's why the doctor advised to give P. a shot to see how I react to it.

Just on a different note, I was wondering if the platelet count naturally decreases in high altitudes? Just before I was diagnosed with ITP I was in La Paz at over 3,000m and got bad petechiae and even fainted one afternoon and felt exhausted.

Thank you again for your contribution!

Hi Ania,
Welcome to the forum. I am an Aussie, had itp 9years, & have counts around 30.
Prednisone turned me into a 'monster' - all the above side effects. In the months after weaning off it my hair fell out considerably. It was dreadful, however I'm thinking in your case, preferable to other drug treatments.
The things that got me through the 12 weeks on steroids was a very supportive, understanding family & humour.
As far as your adventure holiday goes, avoid anything that could potentially knock you around - not worth the risk of severe bruising/bleeding issues. Travel Insurance is is also a factor - you can get it paying a small extra premium, but there are limitations.
Best wishes,
mj

Thank you for your message Meredithjane. I am really dreading the prescribed Prednisone, especially now that you mentioned hair loss. It was through my significant hair loss last year that I discovered I had Itp. After returning from South America I started to loose so much hair that I did a bloot test - and thus discovered ITP. The hairloss was due to iron deficiency and now that I am taking iron supplements the hairloss has stopped and it started to grow back - so I am not ready to loose it again. During my last visit my hemo prescribed me iron infusions and mentioned it may bring my platelet count up a bit - not sure what the correlation is but will give it a try as my iron levels are consistenly low.

As for the adventuring with ITP you are right. Maybe be better off staying away from bungee jumping and rafting (sigh).

All the best!
Ania

Ania,
Having babies is an adventure :silly: - only emotional knocks as they grow up . . .
mj

I guess I'm like Karen in that Prednisone, while it does stimulate me, does not drive me crazy or anything like that. I've been experimenting with a long taper off it for a few months with the doctor but it's looking like I will need to go try Rituxin after all. I've been on varying levels of it for the past 8 months. Right now my dosage is very low (5 mg day) so it's hardly noticeable but we'll see what my counts are today (guessing low as I had a nose bleed last night )

Just an update my counts were 52 yesterday with 5 mg of Prednisone. Down from 92 last month with 10mg. Doctor is going to continue 1 more month at 5 mg to see if I stay stable or drop more. At 5 mg I'd say I have zero side effects other than a pleasant one of helping my sinuses to stay more clear (I used to use a nasal steroid for that due to allergies). 5 mg is considered a very low dose, especially for someone my size (6'2", 212 lbs). If my counts are stable next checkup then it's possible he will suggest long-term prednisone at 5 mg/day. Not sure of the risks of that but as said it's a pretty low dosage so it might be a good way to go. No idea if that is what he is thinking yet though.

If nothing else I'm sure my next stop will be to try Rituxin as I've grown more comfortable with the idea of it given input from many others.

Hi Russ,

Thanks for your input. I hope the low dose of Pred will be working for you and keeping your counts stable. It's reassuring to know that the lower doses don't seem to cause too many unpleasant side effects.

I haven't had the courage to start taking Prednisone yet, I've got my blood test on Wednesday and together with my hematologist we will decide then. Doesn't look too promising, have had plenty of bruises, petechia, one broken vein on my leg plus a big lumpy bruise on my arm. Not sure how I got that but it's a completely new one to add to the collection!

My hema is hoping that the iron infusion treatment I'm due tomorrow will have to bring the counts up a bit (they've been in the 20,000).

Good luck to everyone and greetings

Ania

Quick update: got my blood test results and the counts were at 30,000 - just got away with not having to take Predisone so very happy.

I also had the iron infusion done - paradoxically my hemo expalined that this may casue my platelets to drop as iron deficiency (which I've had for a long time) results in increased platelet level. Not sure how to explain it (would anyone know?) but let's hope my platelets stay where they are and the iron stabilises too!

I am still not allowed to do a bungee jump while on holiday in NZ :huh: , which I reluctantly had to agree with, one of the sacrifices of ITP.

Greetings!

Ania - do you have Evans Syndrome? Some people with Evans find that when the platelet count goes up, reds drop and vice versa. It seems to be a see saw affect.

Good luck - I hope you continue to escape Prednisone!

Thanks for your reponse Sandi.

Hmmm my hematologist hasn't mentioned Evans Syndrome to me before, I am hoping it doesn't affect me as it looks quite serious. I'm going to have some more tests done following the iron infusion in the next few weeks. I am quite new to ITP and haven't been an extensive medical history yet.

how are you feeling these days?