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Muscle cramps and fatigue - Prednisone or flare?

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Posted 3/13/2012 9:56 PM (GMT -5)
Hello everybody, hoping to get some insight.

Trying to figure out if my symptoms are from the Prednisone taper (still) or if my flare is coming back.

I've been having really bad muscle cramps the past few days - even waking me up at night - in my feet, calves, hamstrings. Even in my fingers.  Also had an almost constant muscle spasm in my hamstring ever since going to yoga on Sunday.  I tapered my Prednisone from 20mg to 15mg last week Friday morning. I do usually get muscle cramps the day after I taper the dose, but by now my taper symptoms are normally gone.  In fact, on Saturday I didn't really have any symptoms which seemed odd, but I thought maybe I was finally down to a low enough dose that the taper symptoms were behind me.

I've had an increase in BMs too the past few days - about 3 or 4 a day now although they are all formed. I noticed something red in there tonight but it almost looked like it could be food. Hard to tell - I eat these frozen meals at lunch and sometimes they have little veggies pieces in them.  I did have alot of pain in my rectum last night though along with the leg cramping, which both woke me up.

I'm also sooooo tired the past few days. My hands have been shaking and my heart feels like it has palpitations on and off. 

I've been thinking of starting the mesalamine enemas twice a day instead of just at night although I know my current Mayo doctor will never give that to me. So not sure how I'll go about getting the extra prescription but I know that it has helped me in the past. 

I just want to get off of this Prednisone!  I'm sick of wondering if my symptoms are due to the steroid or my UC and I feel like its just taken control of my body.  I just want my body back!

Nikki

 

Posted 3/13/2012 10:11 PM (GMT -5)
You should really get a second opinion on taking mesalamines orally and in the form of enemas because I wanted to do the same thing a while ago but my doctor wouldn't prescribe both to me because he said it was too much for the system and has had cases of individuals reporting 'shakes, so I would check on that.

What dietary changes have you made?
Posted 3/14/2012 12:32 PM (GMT -5)
It sounds like your symptoms are from the prednisone taper.

I agree about getting another opinion about Mesalamines. My daughter developed pancreatitis after taking too much mesalamine
Posted 3/14/2012 12:51 PM (GMT -5)
I've been taking Mesalamines (first Asacol, then Colazal and added Mesalamine enemas about 5 years ago) for over 10 years now with no issues.  So I"m pretty sure they aren't causing my symptoms.  I get my kidneys and liver tested regularly and tests always come back normal.  They seem to be what keep me in remission and what kept me in remission for over 10 years.  I'd like to take a lower dose of them, maybe 6 Colazal pills a day and the enema twice a week. Hopefully I can get back to my total remission at some point and then reduce the Colazal and enema doses at that point but I will never go off of them again completely as that is what caused this flare.

I'm supposed to taper the Prednisone again this Friday down to 10mg.  I'm wondering if I should when I'm still having symptoms from the last taper?  I may call my doctor at Mayo although I don't trust him much - or at least see if I can talk to the doctor that was mentoring him who is the doctor I had originally seen in the first place.

Nikki

Posted 3/14/2012 4:38 PM (GMT -5)
MN, you shoud probably get a second opinion if you dno't trust your GI. It's important to work with someone who has your best interests in mind. As for whether you should taper, it is a tough question. How bad are the symptoms you're facing? If they are moderate, it will probably get worse if you taper. 5mg can be a big drop when you're below 15mg too, you may want to taper in a smaller increment, like 2.5mg. Even at 2.5mg, I had a lot of symptoms trying to taper from 15mg. Sometimes the question is, do you want to get off prednisone or do you want to get into remission? When I was in these shoes, I HAD to get off prednisone. I had gained a lot of weight and I was feeling terrible. I decided that I had to stop regardless of whether my symptoms returned at a certain point. I ended up starting 6mp and I've been symptom free luckily but if I hadn't taken 6mp, I'd probably still be flaring.
Posted 3/14/2012 7:43 PM (GMT -5)
Sadly, the doctor at Mayo was my second opinion :(  So now I have to figure out if I go back to my original GI here in the Twin Cities or if I try to get another doctor at Mayo (or see if they will let me see the original doctor I met with and not his student who I saw for every appt after the 1st one). 

I seem to be feeling a bit better today although I did go to a class at the gym which might have gave me a pick-me-up.  Eating two bananas a day now and that seems to be helping so wondering if I'm low on potassium as that can give you muscle cramps and shakes as well.  I'll probably try calling the original doc at Mayo tomorrow and see if they let me talk to him instead of my previous guy. May try the enema twice a day too - I did it today and felt much better (other than some rectal pain, maybe a hemmoroid? I do tend to get those often).

Still going to stay with the Mesalamines though. I know they can  be harmful for some people, but I feel the imunosuppresants would be overkill for me. I have a rock start immune system and never get colds - that is till I got on the Prednisone and had my first cold I think in 5 years (and it was a Bad one).  If I can just get back to remission with the mesalamines I'll be happy!

Posted 3/14/2012 8:57 PM (GMT -5)
I would say it's almost definitely the prednisone taper, especially if you've been on it for a while. Those sound exactly like the side-effects I experienced the last time I came off of pred. It's basically hardcore withdrawal symptoms since your body gets so addicted and dependent on it. As I tapered off of pred after being on it for pretty much six months straight, I had bouts where I couldn't stop shaking, felt dizzy, lighthead, irregular heartbeat, fatigue, etc. I also lost about half of the hair on my head - it just fell out in handfuls. Just FYI: the worst withdrawal effects came right after I stopped my last dose. But they DO go away. The shaking/fatigue hopefully in a couple of weeks, the rest will die off one by one over the next couple months.

I just got over the side-effects of the last time I was on pred (hair just starting to grow back, chipmunk face finally de-flated, etc.), and just a week ago had to go back on it - for the third time in a year. Not looking forward to going through it all again, but we do what we gotta do!

Good luck - I hope your UC symptoms stay under control and crossing my fingers for you that you don't have to go back on pred.
Posted 3/14/2012 9:48 PM (GMT -5)
I am currently tapering off of Prednisone and I get the shakes each time I lower the dose. I have become a complete butterfingers and drop almost everything I pick up. I never had leg cramps but I do recall reading here that other people have also experienced cramping at night when they taper. I have a crazy list of withdrawl symptoms from sensitive teeth and losing my hair to acne, moonface and mood swings. I was at 40mg for 8 weeks before tapering so my body has really been through the wringer. There have been several times where I have contemplated whether or not to continue this rollercoaster ride or to just ask my GI for Remicade or 6mp---or both. I feel like I have suffered enough now and I need a quick fix.

Beachgirl--How long were you on Pred before the taper?
Posted 3/15/2012 2:06 AM (GMT -5)
Yeah I have had all those side-effects on Predisone as well:
acne; ultra-sensitive teeth; significantly blurred vision; muscle disintigration (every muscle literally turned the consistency of jello); lots of hair loss from my head, but lots of extra hair growth everywhere else (side-burns, mustache, neck, etc); muscle cramps; the shakes; irregular heartbeat; fatigue; dizziness/light-headedness; joint pain; unusual fat accumulation on the belly, face, and "buffalo hump"; tingly hands and feet; ravenous appetite.... I was darn sexy on this drug! :-P

Can we all just give a big shout out about how much PREDNISONE SUCKS!?!

That is all.
Posted 3/15/2012 10:25 AM (GMT -5)
Prednisone definitely sucks! 

ManhattanMama, I was on 40mg for 2 weeks before starting to taper, so not too long luckily.  I stayed on 25mg for almost 2 weeks because I was on vacation and didn't want to screw with my body. I was already on a completely opposite time zone so my IBS/UC was getting a little annoyed with that.  So I've been on the pred longer than planned so far and just really want to get off of it!

Bootstrap, I've had hair loss for the past 10 years and not looking forward to another shed from getting off the prednisone.  I lost about 3/4 of my super thick hair 10 years ago, I think due to Asacol but no doctor could ever figure out why.  My scalp is already starting to get red and irriated so I know the shed is coming soon.  Funny I've had barely any hairloss since being on the Pred - and as you said hair growth on my face and knuckles (I had to shave my knuckles!!).  I have some medication for my scalp that helps take the redness away though so that helps with the hair loss too. Nioxin shampoo helps too if you want to try that for awhile.  My moon face is out of control too and I can't wait until that goes away!  I need to get my passport renewed and no way I'm living with a moon face picture for the next 10 years! 

Feeling a little better today - no muscle cramps except the usual stiff fingers (I use a keyboard all day).  So I'll likely taper down to 10mg tomorrow. I did start the enemas twice a day and will do that for a weeks after I'm done with the Prednisone. Hopefully that will help keep the UC in-check till my body readjusts to life without Prednisone. Also hoping since I've only been on it since the end of January the effects will disappear sooner after I'm done with it. One can only hope!

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