Solu-Medrol Woes

[KenDub]

Hi All,

First post here. I was very recently dx with MS and have had my first excaserbation in the form of Optic Neuritis. My Eye Dr and Neuro decided it would be best for me to be on Solu-Medrol. I started off with a 3 day course, and the Nystagmus (uncontrollled eye movement) caused by ON actually worsened. At this point, my doctors decided that I needed another 3 day treatment. I am on day 5 of 6 now taking this wonderful/awful medication at home (orally)

So far it has not been fun, with side effects ranging from swollen hands/feet/joints, pain in joints, weak teeth, high blood pressure, low blood pressure, you name it :)

Some advice I can give to those who will be taking Solu-Medrol orally.

1.) Take it with Grapefruit juice, not orange juice. I have read that Grapefruit juice helps your body to more efficiently process the steroids. It also kills the bitter taste a lot more.

2.) I normally take my meds in 3 "stages". First I eat half of a meal, then I drink about 1/3 of the grapefruit juice/Solu-Medrol concoction. Then I take a few more bites to kill the bitter tastes, then drink the next 1/3 or finish the drink if I'm up to it. If not, I'll take a few more bites inbetween.

3.) Find something that kills the taste for you, and keep it handy! It took me a whille, but for me root beer barrels finally kill the taste when nothing else will. I say keep whatever you find on you, because even after several hours, the horrible taste can return.

4.) For pain management, I use Medicinal Marijuana. Normally a strong Indica that if it doesn't put me to sleep, will numb me to the point where the pain is tolerable.

Anything else anybody would like to add?

[t_babez]

Hello I've recently been diagnosed wit MS 2wks ago. Been testing me since sept of 09 after suffering an exacerbation. I slowly slowed down in energy, strength & balance. Soon to loose strength, feeling & control of legs. Which lead 2 me learnin 2 walk again. Durin my hospital stay they gave me solumedrol for 4days. I started regainin strength & energy along with weight, water gain & appetite. I do my best 2 keep healthy food n snacks 2 keep off the weight with the PT I have. I regain all my previous strength plus. Felt young again. Which I met anotha exacerbation not as mad, new yrs eve leavn me n the hospital with anotha 4days of solumedrol. Which again got me moving & strong again. Which lead 2 another exacerbation a month ago when they tested & diagnosed me. But my weakness is my legs. This time my rite leg went almost completely limp & my left stayed a lil stronger. Starting to see & hear things that aren't there @times. This is a very nteresting ride, but I have hope to be 100% back to doing what I was created to do! Keep a smile thru the pain. I am!! :-)

[sunnyinthesnow]

my legs felt that way for a little over a week (during the step-down process). i was walking up stairs like the littlest, oldest lady there ever was. i thought it was the fact that i'd been in bed for 5 days, coupled with some weakness i experienced during the relapse. but hearing you say it makes me wonder if it's an effect of the steroids...?

and I have a history of diabetes in my family.. i guess for me it was inevitable. hrmm...

[KenDub]

Hi Sunny,

I agree, MS is a truly crappy disease! Then again, what disease isnt? lol

I'm not sure if my blood sugare spiked at all since It wasn't being monitored, but I think I'm OK in that department. I did notice this morning that my legs both feel very weak and heavy. I'm hoping this is just a left over side effect of the Solu-Medrol, but I wonder if it could be the exacerbation manifesting itself somewhere else.

Kenny

[sunnyinthesnow]

what kind of crappy disease causes involuntary eye movement AND pain with eye movement at the same time?! that is so rude...

did your blood sugar spike while you were taking the steroids? i was on iv 1000mg/day and  had to have insulin injections periodically. if i have to go back on steroids at any point, i'd like to explore taking them orally.. at home.. not on lock-down at a hospital.

oh, and lots of zen while you're coming down off the bad stuff... it's one heck of a ride.

[KenDub]

Hi Mar, Do you know specifically if this enzyme is used to help process corticosteroids such as Solu-Medrol? Again, my Neuro and Eye Dr. both agreed that it was fine to take with Grape Fruit Juice...not that we can ever believe what the docs tell us :)

Hi twopack, You are absolutely correct about the steroids being of two different types, However, from what I have read, I understand that they are metabolized in a similar fashion. As for Solu-Medrol making joints feel better, this would be the case with reduced swelling, but it looks like I was retaining water pretty heavily, so this is probably where the stiffness and soreness came from.

The therapy is now behind me (at least the 1000mg/day) I am now on a tapered dose of prednisone tablets and looking forward to hopefully never needing Solu-Medrol again, BLECH :)

Thanks,

Kenny

[twopack]

I'm thinking that the steroids bodybuilders take are of a different sort.  Otherwise people on long term prednisone therapy would be ripped instead of hunchbacked.  Anyway, I was mainly concerned about other medications you might be taking and how the juice interacts with those.  

I also would have thought the solu-medrol would make joints feel better, at least over the short term.  But maybe the swelling you mentioned is making them stiff and sore.  The whole thing is unfamiliar from other reports I've heard.

Hopefully you will have this therapy behind you soon and be feeling better.  Good luck and be careful.

Mary

[MarisaV]

I'm not a doctor.... nor did I stay at a Holliday Inn... but...

Grapefruit inhibits the action of the CYP 3A4 enzyme used to metabolize some medications, and can cause them to build up to higher levels. As far as I know, it primarily affects medications taking orally.

Solu-Medrol (methyl prednisolone) can be affected by grapefruit. From what I'm reading, it varies from person to person, but is usually mild. Still, solu-medrol and grapefruit are listed as a combination to avoid.

Hope this helps.

Mar

[Lulu54]

Greetings, KenDub, and welcome to the community here.  I hope you will find it beneficial and find lots of reasons to return often.

Mmmmm, batter acid.  Just what I want a heaping dose of everyday! The root beer barrels sound much better  :-)  Most everyone here who has done mega-steroids has done IV solumedrol - I think you may be the first person here  to do it orally like this. But then again I may be wrong.  Is this a liquid suspension of SM or are you mixing tables/capsules in your juice?

I was thinking the same as Mary about the interaction with grapefruit juice.  Anyone on heart meds routinely has to avoid grapefruit.  So good to read you checked this approach with your docs.

Again like twopack, I have not had the pleasure (yet) of doing 'roids for my MS.  I continue to hope I never will because there are wicked side effects as you well know.

If you feel like it, we love to hear the story of newcomers here and how you came to being dx'd with MS.  I'm sorry you have this MiSerable disease, but keep in mind it could always be something worse.

Welcome again and I'll watch for you around.

be well, Lulu

[KenDub]

Hi Mary,

I have heard of a metallic taste when taking Solu-Medrol via IV. However, I am taking it orally and instead have a very bitter, acrid taste, similar to what I would imagine battery acid to taste like. This effect can last from 2 hours to all day!

As far as taking Solu-Medrol with Grapefruit juice, I checked with my eye dr. and my Neuro and they both say that its fine, and actually better absorbed by the liver when mixed with Grapefruit juice vs OJ; although slightly. I have also read several articles by body builders on taking oral steroids with Grapefruit Juice. Not that I would follow their advice per se, but with my Doctor's OK and their advice, I think I'm OK :)

Nystagmus and ON aren't truly connected, however, inflammation of the Opitc Nerve can cause ON symptoms and practically any other eye symptom. In my case, I have pain when moving the affected eye, Nystagmus, blurred vision, double vision, and extreme sensitivity to light in my affected eye.

[twopack]

Hi KenDub and welcome to our little corner of the world.  It sure doesn't sound like you're having a very smooth time of it at the moment.

I've never taken high dose steroids so I don't have any tips to share.  I'd be very careful mixing any medication with grapefruit juice though.  There is something in it that competes for metabolism time in the liver.  Drinking it can dramatically alter the effectiveness of numerous drugs.

I think most of the people here are given IV steroids, especially for ON.  I've heard them mention a metallic taste during the administration.  Not sure if it lasts through the day.  Is that the taste you are trying to shake?

I'm also not sure how nystagmus is connected to ON.  I know what they are separately but I never seem to get it right on these connections between different MS symptom presentations.

Again, welcome and happy posting.
Mary