My 3 Day Steroid Treatment - Part 4
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THE CRASH - The Whipped Topping of the Solu-Medrol Pie
Well here it is four days after my last infusion and I am still not back to where I expected to be, but I do believe the worse is over, and for that I am truly thankful. This is one experience I am only to happy to block out, as soon as possible. Its not called The Crash for nothing.
What Kind Of Crash?
I pondered the best image to use to illustrate how this crash felt and I knew right away I didn't want a picture of two cars in a head on collision. The crash didn't feel that way, for me. I felt it was closer to ski-diving out of an airplane, but even that seemed to serene of an image. Although the ideal of floating downward fit perfectly, doing it so gracefully did not, so I decided the falling elevator image served my purpose the best.
Just as the poor woman in the picture is in self-protect mode, covering what she can and readying herself for what may come next, that's what I found myself doing as I tried to ride out the sudden disappearance of steroids. You know the crash is coming, you're trying to make the landing as soft as possible, you are stretched out on the ground in the optimal position to survive, and still the force of gravity is pulling you down faster than you can handle. The elevator starts off slow enough, but then begins to pick up speed and all I can do is hold on and hope I reach ground level sooner rather than later.
I begin to feel that my elevator is going to break up and fall out from under me, but it doesn't. Its made in a magnificent way and holds together while it attempts to restart its automatic functions and its emergency procedures. For every major component that has failed, smaller, hidden mechanisms come to life, reinforcing and rebuilding the connections needed to get me down the elevator shaft safely.
I finally get to the bottom floor, the doors open and I have survived. A little worse for wear, but still I got through it. I praise my elevator's design and workmanship and I'm happy that my elevator and I can now get through the last stage of the healing process.
What To Expect
Maybe your elevator is stronger or weaker than mine, so effects will vary. In a nutshell, however, the following were my constant companions during the crash. . .
- Insomnia of varying degrees.
- Conversely, sleeping non-stop, feeling as if I had been drugged.
- Bad dreams
- Profuse sweating
- No appetite - an upset stomach
- Food had no flavor
- A thick white coating on my tongue
Added to the above, were other side effects and peculiarities, such as
- Extreme irritability
- Exhaustion making it practically impossible to stand
- Terrible dehydration, making me feel nauseated and light-headed
- Heart palpitations
- Muscle and joint pain
- Frequent urination
- Sores on my tongue
To Taper or Not to Taper, That is the Question
Before this latest go-round, I was all for NOT tapering, using Prednisone oral tablets. "Get it over with as soon as possible, don't belong the agony." In concept, it makes sense, but in actuality, I found this 49 year old body had a much harder time than it did 4/5 years ago, the last time I needed Solu-Medrol. Since I sure ain't gett'in any younger, I'm rethinking the no taper policy I believed in so strongly.
A taper would prolong it, but at least my body wouldn't feel like it just re-entered the earth's orbit with nothing but a heat shield for protection. Maybe, just maybe when you are close to 50 and you are unable to skip the Solu-Medrol, you should at least get a Prednisone chaser to help the ole bod gear back up again.
What's On Tap
Since my wild ride is over, I now wait to see how the steroids have worked. I already have leg strength back. My balance is much better and my head doesn't feel all clogged up with cognitive impairments of one type or another. If nothing else is gained, then the Solu-Medrol treatment is already a success.
Of course, I wouldn't mind discovering some other benefits or improvements taking place in the next couple to three weeks.
Copaxone Once Again
"They" have already began calling me to set me up for Copaxone therapy. I just want to snap at them to leave me alone until I can stand without sweating, at least. But I don't give in to the urge to lash out, I just ignore the phone call. I know the folks are only doing their job, but seems like you'd give a person time to get through one tough treatment, before you start bothering them about the next one.
I will go back on Copaxone however. I will conquer my fear of needles again, and I will try very hard to remember that taking Copaxone once daily is WAY better than doing Solu-Medrol once every 4 or 5 years.
The End
I guess in my case, what goes around comes around. I started on Copaxone, and here I am about to start it again. If you are wondering about IV steroids, I hope this 4 part series has enabled you to weigh the pros and cons in line with your situation.
I like knowing Solu-Medrol is there if I need it. But I sure hope I don't need it again for a very long time. With time comes an absence of detailed memory. In 4 or 5 years I have no doubt I will remember I don't want to do the IV, but all those things that circle my mind in such detail at this present time, won't be there down the road. I can only hope I will at least remember to tell my doctor, "I WANT A TAPER!"
Please feel free to leave your comments or ask any questions I did not cover in this 4-part series. Thanks to everyone who has taken the time to read these articles. I'm sorry it has taken so long to polish off this last part.
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Thank you so much for writing this, I will undergo my first infusion tomorrow for 3 days. Not looking forward to the crash or possible thrust. But also am glad to have a heads up. Thanks again
Hi jseven! Thankfully it has been a couple of years since I wrote this account. Needless to say I am very happy that I have not seriously relapsed since the time of this writing. :)
Sorry for your pain and suffering. I am so anti-steroid since I'm in my 7th month of topical steroid withdrawals. My granddaughter had to take 6 months of prednisone and it left her with a moon face and cellulite, along with moodiness and severe leg pain. My story is on my HubPage. God bless and hope things improve for you. Voted up.
Thank you so much,lovelypaper! :-)
God bless you, Jen. You've really been through alot. I will keep you in my prayers.
Hi Chezza, you really know how to make my day!(smile) Thanks for the kind words I am so glad our shared experience has proven beneficial. I don't envy 5 days of steroids, but do hope they help you recover from your latest relapse. Please drop me a note and let me know how you are doing.
Jen/Dar
Hi Jen,
I always think that we are guided to find things when we need them the most and I have read your articles and they spurred me on to go to the doctors and get some steroids. In England it is a 5 day oral dose. I felt like I was reading about myself when you said 'am I having a relapse?' Your articles are wonderful and I'm sure a great inspiration to many of us MS sufferers. Thank you so much for taking the time to share with with us.
Well since most of us crave salty, sugary, junk food. I think you are doing great! lol Even if you do gain a couple of pounds it will no doubt just be temporary, until the drugs leave your system. I retain water on steroids, regardless of what I eat. But avoiding sugary, fatty junk food would be my recommendation.
I have an amytryptyline at bed time so had good nights sleep ,few nightmares and sweats for one night only . Can you reccomend what to avoid food wise as i dont really want to put too much weight on . Been craving mackerel tomatoes and salad all week and snacking on bran flakes and just drinking water . any tips ? and thanks again for you info
I'm assuming you were on a 3 day pulse? If so it sounds like the hardest part has passed. You will still have periods of tiredness, but if you take it easy, by the time a week has passed you should feel your body is just about back to normal. Good news that your eyes have improved this soon too! My sleep habits are totally off 2 days after I stop the steroids, then I slowly return to normal sleep habits which helps me recover the best. How are you sleeping?
Hi Jen , day 1,2and 3 good days 4 and 5 crashed day 6 today im feeling better . Do you think the crash is now over or can it come back ? My eyes have improved lots too !
Hi sue, so glad to meet you! Yes steroids can make you feel like you've been on the losing end of a fight.
I guess that is actually what is happening because 1-your body is fighting itself and 2-your body's own systems are fighting to regain control of what the steroids provided for 3 days or so.
You WILL win this fight though, so hang in there until the crash is finally over. I hope you are feeling better soon!
p.s im brendas cousin.... thankyou for the information .
finished steroids 2 days ago and now feel like ive been battered and bruised ! just hoping this crash disappears soon ! felt brilliant until last night so just hoping i recover soon .
Your most welcome brenda. I hope your cousin feels better as a result of the steroid therapy and it is good to know she has a caring family member who wants to understand her MS.
im not ms sufferer but my cousin is.she has just had day 2 of steroids and told me to read your diary.thanks for keeping it, it will help me understand so much more.
Hi Nancy, Sorry to read that the steroids are not working but happy to see your nurse is on top of things and will begin alternative therapies. I know about Tysabri, in fact was scheduled to begin it at one time. It has helped many people and I hope it will help you as well, if that ends up being the way you go.
Hello,
Has anyone gone through or is familiar with plasma replacement (plasma is removed, antibodies are removed and then artificial plasma is put in its place-similar to a dialysis process)? I hope to do this because steroids had no affect. Thanks a lot.
Hi Jen,
Well my MSNurses who said so certainly that steroids would work for me are now are saying they are unlikely to. I am completing a set of 5 final treatments, mostly for the insurance company. I can then say that I'VE TRIED Steroids completely. The next step is a treatment similar to dyealisis. Treatment includes a hospital stay. Also will talk about Tysabi (probably spelled incorrectly) when I see my neurologist in Sept. Not sure that it isn't only for just relapsing remitting ( I have 2nd progressive) I'm getting pretty desperate.
Thanks, Nancy
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Nancy I know its hard when you are feeling so lousy, but don't give up yet. Its too soon to decide you won't get any better. Try to ride this bad period out and wait until you get your next infusion and then see how you feel.
If you truly are not going to get better from the steroids alone, your doctor will try something else. All is not lost just because steroids dont work. There are other medications that do work, please try to remember that, as you go through this tough time.
Jen
Hi Jen,
Thanks for your response. I wonder if that good day,the next day after the 3rd steroid treatment was just the steroids themselves. I've been getting worse every day since then for 5 days. God, this seems like a long crash! I have 2 more IV Steroid treatments next week. Feel's like this new poor level will be the most incredible challenge for them. I have trouble believing I will improve at all. Well, thanks again for all your help.
Nancy
Sounds like the crash to me to Nancy. Seems like it takes one day after the infusion for the steroids to get out of your system, then the crash starts.
Its a good sign that you did have one good day though. Just be very careful, even when you feel good. It is better to hardly do anything at all then to do too much and have to pay the cost, you know?
You can contact me by e-mail, it is the one of the links under by profile picture. Feel free at any time, ok?
Jen
Hi Jen,
Thank you ror your response-it means a lot to hear from someone who knows! The day after my last treatment was good, I had a lot of energy, but since then I seem to be getting worse, the Depends as an example. I hope, hope hope that 2 more treatments will help. The nurse said this is the crash-what do you think? Thank You!
Nancy
Hi Nancy, Have you noticed any improvement in any areas since your initial 3 treatments?
It is not unusual to need 5-day treatments for stubborn attacks. Unfortunately we can only wait and see and hope that after some time has passed you will see improvement. If not, your care team will present you with other medicinal options.
Please keep us informed on how you are doing.
Hi All, After 3 intra. steroid treatments (ending 4 days ago) I'm wearing Depends and unable to do anything!! I'm going to have 2 more intrav. treatments. Can I be hopeful of some degree of improvement? Thank you! Nancy
Hi Nancy,
So sorry to read you are not able to walk. I almost got to that point, but not quite. Steroids are powerful and hard to endure, but they are also amazing in what they can arrest or restore.
There is every reason to have hope and maintain a positive attitude that the steroids will help you. I wouldn't expect them to work quickly, but there is no reason not to think they will give you some relief and possibly even allow you to walk again.
Contact me any time. I would like to know how you are doing.
~Jen
Thank you Very Much. I've had, within 2-3 weeks, loss of my ability to walk, even with my cane. Had a brain MRI on Friday, my 57th birthday, and am now waiting to hear about my steroid scheduling, hopefully during this coming week. I've been told by my MS RN, that she's very hopeful that the steroids will help. Of course she also thought that I'd improve when my symptomless UTI cleared up and I've only gotten worse. I'm anxiously awaiting the steroids but am almost afraid to hope! But will desperately do so. Thank you All.
Thanks for reading and commenting on this one too, prasetio30.
Thanks for share. great hub
OK, Connie. I have to see my GP for my other health concerns, so I will get his help with this at that time. Right now, I'm not on my feet yet, so I'll make the appointment when I'm stronger. First time this has ever happened and I've taken a lot of solu over the years. Thanks for the info.
Yeast infection is listed as a side effect of Solu-Medrol. You have probably heard of thrush (yeast infection) as something babies get in their mouths, but adults can get it too. Neither cure is otc, so you will have to call your doctor. Just do it, because, though the symptoms might go away, the infection really does not and will come back again and again. Weakened immune systems develop thrush more easily. Ask for the difuclan for now and when you go to your doc, see if you can get the nystatin to keep on hand in case you start to have symptoms again. You can then just use that before it gets out of hand.
Hi Connie, Well ick , an oral yeast infection? Solu is just the gift that keeps on giving eh? My doctor's office called yesterday to check on me, but I just let the machine pick up. I have no knowledge of difuclan or liquid nystatin, but am assuming it isn't something I can pick up at the corner drugstore? I guess I'd better do a search about it. Guess there's no chance it will just go away in a day or two? After all these days with it, I wouldn't mind waiting for it to clear up on its own, if it only took another day or so.
Thanks for letting me know. I would have never guessed it was a yeast infection.
Wow, Jen, I am very impressed with the elevator analogy and mechanisms to your solu-medrol crash. Great writing!
BTW, that thick white coating and the sores on your tongue are most likely the result of Thrush, which is an oral yeast infection. It is easily treated and cured by either (best and quickest choice) one difuclan tablet or a bottle of liquid nystatin which you swish around in your mouth and swallow (takes longer to cure this way). Ask your doctor if it is something that you can take.
Glad you made it through. I've been thinking of you a lot while you've been going through this.
Hiya dawei888, with each passing day I'm feeling more like myself. Not sprawled out on my bed, holding me head any more, now I'm upwardly mobile and just trying to stop sweating! LOL
Good to "see" you again.
HI Jen,Whow - that cartoon took me by surprize. I really hope you're body is reacting in the right way to the steriod treatment. Keep pushing out your articles as I'm sure you're helping and inspiring 1,000s of people around the world with MS. -dawei888 :-)
Hi emohealer, Thanks for taking the time to leave me a comment. :)
MS is so different for each person, we could all talk about the same exact symptom and yet have a totally different perspective. For those who find my slaint, close to their own experience I do hope they find it of value, like you said.
Personally, I look forward to reading what others have experienced, and as you wrote, I will consider it their gift to me.
Thank you,
~Jen
This is an incredible journey you have described. I appreciate your candid approach. Although your experience is not an aspect in my life, I can see the true value of what you have shared for those whom it is. Keep sharing as you reach higher levels of successess through your journey. Hope is sometimes the greatest gift and that is what you are giving. Thanks
Jen's Solitude Hub Author 2 months ago
jotweety, I am assuming you have started your first dose so am wondering how you are doing. I hope you are surprised and find that the steroids are kind to you. (smile) But either way, you will make if through and hopefully you will feel better in the very near future.