Prednisone side effects.....?

[-Pleiades-]

Hi Everyone, been lurking for about a week now but thought I'd join up and make a post. Hope you all don't mind!

Basically my story is I was diagnosed with Crohn's just over a fortnight now and my GP put me on prednisone to help deal with the pain until I could get in to see the gastro doc which is still another week away.

First up my GP put me on 37mg for a week then I had to drop down to 20mg after that. When I was on the higher dosage it felt great, I still had the runs and the pain, but it definatley took the edge off it all. I was sleeping great and not feeling nearly as fatigued as what I had been.

Now it seems like the honeymoon period is over and I was just wondering if what I am feeling/experiencing now is normal or if anything can be done?

At the moment I'm feeling so down and depressed. I feel sorry for my poor husband. Stuff that wouldn't usually bother me really hurts....it's hard to explain........ I just feel down and extra sensitive to everything and it's not me, I don't like feeling this way. Is this normal with prednisone?

Also another thing I've noticed in the last 4 days or so is really bad headaches especially around my temples and also pain in my eyes and light sensitivity.

Is normal of prednisone? Can anything be done?

Thanks for reading.

 

[katiesue1506]

Welcome to the forum!

Unfortunately the Prednisone does all of that to you. I was on Prednisone for 8 months almost to anywhere from 60mg to 1mg. When I was on the higher doses of Prednisone I had:
-mood swings
-sleep problems
-headaches
-joint pain, swelling
-eye pains, itchyness
-blurred vision

And then when I went to the 30mg-15mg range I had the same problems but add weight gain and puffy face to that.

What the problem with Prednisone (especially for women) is that it makes you gain weight which is good for our disease, but it can cause confidence issues which are even worsened by the mood changes. Just watch out for that time of the month, I was very touchy at that time and I would get so pissed off so easily, my poor boyfriend... I remember one time my roommate was just doing little things to annoy me and it bothered me so much that I had to leave my room and I ended up crying like a blubbering idiot.

It's okay to feel how you do, I hated the sensitivity thing too, because I'm not like that at all. I just had to learn to recognize the mood changes as a side effect, and not as really me. Then I could better control them.

As for the headaches and eye pain, Tylenol is your friend Just remember that everything goes away once you are off of the medicine.

Don't let any of this discourage you, while Prednisone sucks, its definitely managable and its very good at helping your appetite.

 

[Kev]

Hey Pleiades, welcome to the forum.. I'm no expert, I'm in the midst of my 2nd (actually 3rd sort of) course of treatment involving pred. I actually posted my experience as a daily diary... simply because going in I'd heard so much good and bad about the drug that I wanted to be able to pass on what I learned first hand to others facing the drug for the 1st time... It's listed under treatment as Prednisone and me, a personal diary.. You can go there to get chapter & verse, but I've found, and others have voiced their similar experiences.. that pred does have a litany of side effects, some mild, others not so.. but that it usually makes one feel a great deal better... for me it took a while the 1st time, as I was apparently started off on too low a dose. the doctors tread cautiously because of the potential for side effects. My 2nd run went much better, and I improved tremendously.. but it took at least 1/2 week or more before I really saw major improvements.. This time it has taken nearly 1 1/2 weeks to see major improvements.. I mean, pain, gas, other small issues respondly more promptly, but improvement in BM's, etc, taking longer..
That's been my most recent experience.. don't know what it implies for over the long run.. if the body (my body) is becoming resistent to these benefits.. Anyway, one of the principal things I found, and others have shared to, is it usually is a smoother transition if one starts off on as high a dose as needed to do the trick, then to taper off as slowly as your body can tolerate. Seems to me to drop from 37 mg to 20 in one week just a little over accelerated, but I'm no doctor.. My 1st time, I tapered in 5 mg decrements each week after I hit my max dose... This time I've been told by my doctor to go down by 2.5 mg decrements... meaning my taper period this time will be AT LEAST twice as long as last.. and that is without any hiccups. My own, totally amatuer, completely untrained take on your situation is that you are getting 'typical' side effects, but unless I mis-interpreted your 37 - 20 transition period, you may not achieve or attain the best possible positive effects of pred if you weren't dosed hi enuff to start, or the rapid taper throws you into a tailspin.
Believe me, my experience was that the pros outweighed the cons for me, but that it took some juggling to get to the right initial dosage, then more juggling to hit the rite taper program.. I dunno if any of this is helpful (for what its worth).. One last thing.. pred is tricky by itself.. it is one of those drugs you pretty much have to take exactly as stated in order to minimize side effects. For me (and others who have commented) that's usually first thing in the AM, not on an empty stomach, but your prescription/case may be different, okay?

 

[Darkeffx]

From what I understand, I had it pretty easy on prednisone. I started on 40mg and went down by 5mg per week after the second week. The only side effect that really bothered me was the mood swings. I would get pretty depressed for a few days, and then go through periods of complete mania. Luckily, I knew what was going on and was able to deal with it accordingly, and my friends were pretty understanding. Other than that, I just had some annoying acne and a hard time sleeping. Hope things work out for you.

 

[HostileJava]

I have a love/hate relationship with the stuff. I love the way it calms my flair ups. I hate everything else it does to me. I would have mood swings, puffy cheeks, exhaustion from being in the sun any length of time, night sweats and trouble sleeping if I took it to close to bed time, joint pain, and acne out breaks. I'm sure there is more I'm forgetting.....

 

[Kev]

Mood swings... they didn't coin the phrase "roid rage" for nothing... But that aside, here is what I most vividly recall. Once it kicked in, I felt good, better, then great. And other issues that were nuisances simply went away too. Frinstance, my 'winter skin'... dry patches on my lower legs that itched like the devil... went away.. same for my scalp... no more dandruff for me. And my arthritis pain... hips, knees, elbows... esp the kneecap I broke in a fight, or the ankle that was crushed in a construction accident. All of those pains.. "GONE!!" Like magic!! I felt like I was 20 years younger. And, EVEN more important, I felt like I was truly winning the fight with this disease, tho that only lasted till the latest flare-up. OK, so it was a nice vacation from my disease. The cons??? Yeah, I had nite sweats... but w/o the pred I still get nite chills... like I can't keep the cold out. Trouble sleeping? For a while, but those eventually settled down. It beats the many nites pre pred when I couldn't sleep, sometimes even lay down, just from the pain, the cramps, the dreadful fear of having an 'accident' in my bed. Anyone else know that fear?
As for migraine headaches, those I had long before I went on pred. I dunno if that's a part of crohns, or a side effect of my other meds. It appears to be a side effect of the 5-ASA. Moderating the way & time I take it moderated the headaches.. My face got a little flushed from the pred, even a little puffy. It apparently made me look healthier.. a bit of a nuisance at times, when those around me wonder how one can be sick and yet still look good. but it beats the way I looked 2 1/2 years ago, like some living skeleton with skin stretched over it... and I have my drivers license photo as proof of how bad I was then, and how much I've improved since (even if appearances decieve)..
Anyway, my point is... pred's a drug of choice in combating this, it has both good and bad to it... you have to experience it and decide for yourself, ok?

 

[-Pleiades-]

Thanks for your replies everyone.

I thought it was a big drop from going to 37mg to 20mg but that's what my GP told me. She basically said take 1 1/2 tablets for a week (37mg) then drop back to one tablet (25mg) after a week. She also said to take them at night time with dinner???

I'm experiencing the other side effects as well, the joint pain, face flushing, sleeplessness etc as well. I just didn't think it the other two side effects would be as bad or severe or just imaging things!

It's strange because I'm not actually putting on any weight, I'm losing it, but it's good because believe it or not I could stand to lose a few kilos. Before I was actaully diagnosed with crohn's I had a shocking (and I mean shocking) diet due to a lot of things so I never put on weigt I just stayed the same. But now I'm eating a lot healthier and the weight is just dropping off me, probably too easily.

I guess one upside of the prednisone is my back pain has just about gone away, wasn't expecting that. I have bulging discs in my back which was probably just as crippling as the crohn's but but the pain has probably improved by 80%!

Either way I still can't wait to get off this stuff and start on something that will be a little more long term and a bit nicer to me.

The drugs I have to take long term, do they have as many side effects as what the prednisone does?

 

[Kev]

going to go way out on a limb here.. i'm no expert, don't want to cause you to conflict with what your doctor is telling you to do.. but, although highly trained and experienced, we HAVE to remember doctors are human too, and they can & do make mistakes... any professional can. Here has been one of my personal experiences.. Was prescribed salofalk.. told to take it with meals.. that's what the pharmacist, my doctor (at the time) and the literature that came with said to do.. Problem is.. I was having horrible side effects. so, I went to the website of the drug manufacturer.. located in Germany. It told me to eat, wait 1 hour, then take my meds. I used their methodology exactly as they stated on their website, and my side effect issues improved tremendously... Look, the professionals are doing their job, but as patients.. fighting this illness becomes our life work (literally). you have to become your own 'health' advocate. You have to take an active role. Do the research.. If the manufacturer of the drug you are taking suggests a method that doesn't match exactly what your health professionals are telling you to do, then YOU need to discuss this, and discover WHY there is a discrepancy.. if there is 1.
The more you know, the more questions you ask, the more active a role you take in your recovery, wellll, any professional worth their salt should see that as a committment on your part to do everything possible to get well/better..
At least, that's my personal take on this.. that's how I approach my illness..