Prednisone - How Bad Could It Be?

Why not have a conversation with your doctor about prednisone dosage and treatment goals? Get on the same page. If your doctor won't listen to you (I don't mean 'if your doctor won't follow your orders' - they should listen and take into account your wishes) - maybe it's time for a second opinion.

I regularly negotiated prednisone dosage with my doctor. If you have no symptoms and are at 65 I think it could be a matter of medical opinion not fact if you need to up your pred.
Erica

I'm sorry you didn't get the news you were hoping for. 65 is still good though. You know, you have a say in what medicine you take, or don't take! I'm not suggesting you just quit the prednisone, but you can voice your opinion, plead your case, and in the long run you have the final decision! I remember when I was hospitalized just over nite cuz my count was 4. It was during the taper and the Emergency room doctor wanted to up my dose, I flat out refused! I just continued my taper. He even went so far to say that my hemo wanted to increase it! I knew better. Anyway, ultimetly, you have the final decision.
about the blood draws! I hated it too! I have very hard to find veins. They had to even try my foot once! The oncology nurses pushed for me to get a port when I started the Rituxan, so I did it. It makes it easier to move around during the treatments, but it still hurts when the access it. If I wasn't having the treatments, I'd stick with the arm draws.

Thank you for your reply.

Here's the thing: I don't want to take any of the more 'stronger' drugs or have a splenectomy. SO, if Prednisone is the lesser of the two evils and all it requires me to do is pop a pill a day, then I can live with that right now. The problem is two fold though:

1. Last time I had a dosage of Prednisone cycle, I went into a semi-remission for a couple of months. My counts held around the 140,000 range for a couple months, and then started to dip gradually. This time, yes, I'm at 65,000 (on 20 mgs). BUT, I am currently battling a viral infection, and I am aware that infections decrease your platelet counts. Does anyone know or have any statistics of how much platelets decrease when you get sick?

2. Second, I know my Hemo is willing to have me be at the range of 25,000 ish, and he is okay with that. In fact, I talked him out of making me start steroids when my counts were under 5,000. But after a CBC showed I was under 1,000 I had to give in and start this current prednisone cycle.

I'm an advocate of "treat the patient, not the number" . . . I just don't want it to get so low, that it's too dangerous for me.

Del:

There are no statistics regarding how much counts drop when a person is sick because it varies for everyone. Some people drop drastically, some only drop a bit, some stay the same and some experience a rise. It can even differ for you with each illness you might get over the years. There is no consistency with ITP. Every time I thought I had it down, it surprised me.

It sounds like you have your plan in your head and if that works for you, it's fine. It will require frequent monitoring though and might get old in time. Everyone has to do what they think is best for them.

Thank you for your response.

Today was another CBC... and as always, I am "waiting" for my number. Last time was 65,000, so hopefully they either maintained, or increased (since I have been taking 30 mg per day). I'm also at the tail end of my viral infection, so potentially there is some positive news.

One new symptom that came up for me about 5 days ago...blurriness of my vision. My vision will be normal one minute and blurry the next and it happens quite often throughout the day. Has anyone on prednisone ever experienced this? Called my dr yesterday and she had me come in to do some blood work because she suspects it is the Prednisone, but I'm only on 40 mg/day and I have been on it for about 7 weeks now. The dr is supposed to call me today and let me know whether to stay on the same dose or start my taper. I had a sleepless night last night and my joints are all killing me this morning. I hope the taper will not make things worse.

YES! Intermittent vision blurriness here too. Mentioned it to my GP who wasn't concerned by it, but we were going over a lot so I didn't find out if I can blame it on the pred. I assume so, since it started after I started it. Also increasing muscle aches.

Blurred vision is normal with pred, as is seeing colours slightly differently. It took me ages to work out why I was always fiddling with the colour controls on my TV card on computer until I realised it was only when I was on pred.

I would far rather be on some of the other drugs than keep taking pred. The long term side effects are not good and nobody should take it over and over. Azathioprine or mycophenolate generally have fewer side effects and are well worth a try in my opinion.

Azathioprine is a known carcinogen tho.

So are steroids, to a degree. Anything that suppresses the immune system carries the risk of cancer. Tough decisions!

Sandi I couldn't find anything that states prednisone is a carcinogen. Could you cite that for me - thanks!

I did find this - it is almost 20 years old though.
www.ncbi.nlm.nih.gov/pubmed/1411127
"This study suggests that long-term (lifetime) prednisone use does not increase cancer risk and may actually reduce it."

Good morning everyone. I wanted to give you all a quick update on my Prednisone Experience.

I recieved my CBC recently, and my platelets were back up to 95,000 (after 5 days of 30 mg). I have now been taking 20 mg per day for 2 days, and I have another CBC tomorrow. Perhaps I will be able to taper down?

I'm truly wondering if my initial decrease to 65,000 a week ago was due to my viral infection, or if it was the fact I didn't take as many MG's of Prednisone?

I'm also wondering if the 20 - 30 mg mark is my "good mark" where, if I take this dosage, I would be able to maintain these safe levels. (Though 50,000 would be fine with me too).

I also have question.. I taking 60mg prednisone for a month then my hema taper me to 40mg for a week then 20mg this week, Am I tapering too quickly?

And also, if the side effects of prednisone(acne,moon face, etc,..)will also subside while tapering?

Melinda:

"Some patients who took prednisone or similar medications developed a type of cancer called Kaposi's sarcoma. Talk to your doctor about the risks of taking prednisone."

www.nlm.nih.gov/medlineplus/druginfo/meds/a601102.html

www.ncbi.nlm.nih.gov/pubmedhealth/PMH0000091/

I've researched this before and had trouble locating direct articles. But what I did read was that long term Prednisone use suppresses the immune system (which we already know) and when that happens, it inhibits normal cancer fighting cells from doing their job. I wouldn't say that Prednisone causes cancer, but it could stop the body from it's normal fight.

Here's an article that discusses cancer and the immune system:

"It's a very dynamic interaction," said Lee. "If the immune system is successful in stopping a developing cancer, we never know about it because no disease develops. If the cancer cell population overcomes the immune system, you get cancer." In other words, physicians and patients see only the immune system's defeats. This adds an additional hurdle for new cancer treatments called immunotherapies meant to work by stimulating the patient's immune system to attack tumor cells."

news.stanford.edu/news/2009/may20/med-immune-052009%20.html

If a person on Prednisone is susceptible to chicken pox even when they've had them before, it must be potent enough to cause some other serious disruptions. A lot would depend on the dose and the amount of time a person was on it.

I also have question.. I taking 60mg prednisone for a month then my hema taper me to 40mg for a week then 20mg this week, Am I tapering too quickly?

And also, if the side effects of prednisone(acne,moon face, etc,..)will also subside while tapering?

dhars11,
the taper speed partly depends on how long you have been on prednisone. The less time on prednisone the faster you can usually taper.

If you feel ok on the taper, then it is probably ok . If you don't feel ok ask your doctor about going slower.
Erica

dhars

I think you can taper faster at higher doses, so you might be able to get away with 20 mg drops. I usually taper by 10 mg until I hit a dose of 10 mg and then I slow right down and do it v-e-r-y, v-e-r-y slowly. I don't really notice many of the tapering effects until I'm down to 10 mg. Of course, if you're having problems, then you should slow down as we're all different.

I've heard that prednisone can increase cancers as well. I was taught when I was an undergraduate many years ago that immunosuppression in general increases cancer, so it's possible that it's just assumed that prednisone has this effect or it's also possible that the data is very old and maybe not even on the internet.

Lily

Thanks for the sites Sandi - I'll check them out. I figured you knew, I just couldn't find anything.

I think the taper depends on the person.

I was on 60mg a week or two before they dropped me down to 30mg - with that drop my count bit the dust. I had to go back up to 60mg and then taper slower.

Good morning everyone...

So My Prednisone Cycle ( I hope ) is nearing an end. I am down to 10 mg per day right now. I go for a CBC tomorrow. Last week my counts were at 119,000. A great number for me, considering I was at under 1,000 on December 17th.

I am hoping that this works, and when I get off the Prednisone, I can last without it for awhile.

I haven't had too many side effects right now. The major one is that I've gained some weight (because I've been eating so much). I don't have "moon face" but I have put some weight in the gut area.

Thanks to y'all...you know better than my hematologist..

I think that this website (and these threads) are so helpful to people. They allow you to come to your doctor, armed with more knowledge to have discussions about the right choices for you.

The more information, the better. Sure, everyone is different and responds differently, but there are a lot of similarities.

I am now waiting for the CBC results... maybe the prednisone is working and my counts are at or above 119,000

Went to see my endocrinologist this morning and she said now I am pre-diabetic! I was not happy to hear this news and will have to start monitoring my blood glucose levels twice a day! She said she thinks it's from the Prednisone, but I don't know how it could happen that fast and I've been doing so good lately, eating healthy, working out; so it's really a bummer to hear something new is popping up. I guess last week or the week before when I was complaining about blurry vision, my nephrologist ran a hemoglobin A1c test and this is how the endo decided I needed to start doing the finger pricks. My only symptom recently (in the last two weeks) has been extreme fatigue and this is getting in the way of my wanting to continue to work out. The dr said to try to ignore the fatigue and work out anyways and hopefully the exercise will help kick in some energy. I think I am going to need someone to physically lift me onto my machine three to five times a week with how tired I am! (B-12 supplements are no longer doing a thing for me.)

What dose of pred are you on? When I was on 50mgs, my blood sugars went through the roof almost immediately. Once I dropped to 30, everything went back to normal.

Hopefully it is just the pred and once you decrease the dose, things will be normal for you.

Pauline - Prednisone will mess with blood sugar levels. Mine was on the higher end too when I was on it. I only knew about it because I used my neighbors blood sugar monitor one day.

My vision has been blurred too lately. I can't see the ophthalmologist until May though.

Maybe you're tired because of your thyroid? What's going on with that? Have you tapered Prednisone yet?

IM newly diagnosed and starting to taper from 120mg to 100 this week. The doctor sounds hopeful that I will be able to successfully taper but I kinda felt like that meant I would end up not taking the Prednisone at all in the end, It seems though most of you remain on a small dosage, is there a chance of being completely with out Perdnisone?

Most people do not stay on a small dose. A few of us have for certain reasons. I take it for Lupus, not ITP. Others take small doses because other treatments do not work for them. You're a long way from being at that point.

Does this mean that I may have to be on some kind of medication to make sure that my plateletes dont drop again?

The day I called my neph to complain abt my blurry vision, she sent me in for bloodwork. My labs turned out fine so she went ahead and started my taper from 40 mg to 30 mg. My bloodwork was done (hb a1c) was done while i was still on 40 mg. I guess ill see how my glucose levels really look tmw since I jus got the kit today.

Ive been having a terrible time with cramping inside my knees. It is a very deep pain that is hard to get rid of once the "cramp" comes on. Trying to drink lots of water in case its dehydration. My TSH is normal so I dont know where the fatigue is coming from but I have had ALOT going on at work and it could just be stress taking a toll on me. I go back to the endo in 3 months for a sonogram of my nodules and then they will run the full thyroid panel at that time to check the antibodies since the last labs showed the markers for Hashimotos.

Julie - no. Most people don't take medications to keep counts from dropping. It's really not necessary. When you finally do get off of Prednisone, you will be monitored. If your counts drop to the 20's or 30's, your doctor would probably suggest treatment then. Everyone wants the goal to be maintaining normal counts, but with ITP, you have to sometimes accept that safe counts are okay.

Pauline - I don't know, I'd have to blame Prednisone. You do have a lot going on though, so I don't know. It could be a combination of factors.