Saturday, August 15, 2009

Another Steroid Infusion

Well, I swore I wouldn't do this again. Yet here I am, up with insomnia after day three of another Solu-Medrol infusion. For those of you going "what the heck is that", the short version is it's a very high dose of steroids, 1000ML a day, administered via IV for three days in a row. For those like myself with Multiple Sclerosis, sometimes it's a necessary evil to tame the monster lurking inside of us. Don't misunderstand me, for me and many others, it does work. In my case, it gives me precious, cherished time feeling 'normal' that I never get except after an infusion. Today I went to the grocery store for the first time in months. I walked at surprisingly brisk pace, I wasn't unbalanced, I wasn't fatigued, heck I enjoyed it. My daughter Morgan (who's 14 years old) says I act like I'm on speed or the energizer bunny after an infusion. LOL. What's sad is? This is how I used to be; this is the real me that now normally spends her days trapped inside a malfunctioning body. It's been so long that Morgan forgets this was how I was when she was little. I was a single mom with her for many years, and we were always on the go. Taking road trips, day outings, shopping. Those days seem like a past life to us both now I fear. Even sadder, that's a 'me' my son Joshua (who's 6 years old) has never and will never know. Except...for these precious rare times after a steroid infusion.

And those are the two reasons I caved in and had another one over the last three days- my children. Yes, I was relapsing again and badly. Yes, I needed it to pull me out. But when my doctor said he wanted to put me on one again, I won't lie. My first thought was "oh, I'll get a couple glorious weeks of being normal with my kids again". And I immediately agreed.

So here I am, well after 3am and wide awake due to the horrible insomnia that comes with the infusions. I can go literally days with little to no sleep for the first week during and after one. That, is the side effect I simply despise. Especially since I know my body needs the sleep badly, and I will eventually crash very hard. There is also the very real risk of becoming diabetic from them, as well as your thyroid shutting down. Not to mention organ damage. For the time you have such an insanely high amount of steroids in your system, your body is no longer in control. The steroids have full control over your functions. My point? The choice to use this therapy to tame a relapse is not one that should be entered into lightly and without a lot self education on the risks. But for me, the benefits far outweigh the risks. So here I am. Again.

I have to say, it's been a really really rough year. After my first infusion, I was totally MS symptom free for a little while. This time is a little disheartening, as I am not. Yes, I am TONS better, but my left arm and hand are still weak and tingly, and I've only regained maybe 70% of the feeling in the left side of my face. I suppose it's to be expected. My cognitive issues remain as well, maybe a slight improvement in processing time and a little better short term memory. As I stated in my last post, I have progressed. It's just difficult to accept the fact I have reached the point some things may never, ever be normal again as long as I live. Even after an infusion- my last and only hope for a rare reminder of what normal even remotely feels like.

But, I choose to be thankful it's worked at all, and has given me this brief window of time to really enjoy getting out and doing things. Soon enough I will slow down again, and find myself unbalanced. I will get fatigued just from the walk from my car to the store, and grocery shopping will be fond memory. After my first relapse, I found after the steroids wore off my baseline had changed for the worse, I expect the same to happen this time as well. A relapse takes it toll on you without doubt, and very few of us with MS come out of them without some lasting effect that we didn't have before we slipped into them. So until I find out what that will be for me...and I go back to being trapped in my failing body... I will enjoy this precious, blissful time I have free from major disability. An all too brief breaking free of the monster that lurks inside of me. For that, insomnia is a small price to pay :)

Be well all, and may God bless you.
Mis

22 comments:

  1. I to just finished my 2nd does of a 3 day treatmean, due for my feet (mostly toes) being numb and these joint pains all over. Md gave me ativan to help calm me to sleep and Voltarin to help with body aches. (ive never had body aches like thins) it started 2 days b4 infusion and go worse. I got 1 shots thourgh iv of Tordol,helped a little. I got dx 7/08 by waking up one am with horrible-hypersensitie earlobe on my left. mds thought i was crazy. I went from md to md till finally an mri and 900 bucks later. Its still all so new to me. They say you get hungry a lot on this,but I have so much nausea, could be though that I started lexapro to days ago to see if that would help with me emotions. I feel like a basket case. Well sorry to pitty party it up haha. Sometimes its nice to just vent to someone that understands. I need that,I know Im not a lone ,but i do feel like it. So now that I finished my 3 day course of seteroid,what do i have to look forward to now? All my symptoms are stll here. I just wanna be beter and not so tired by Christimas. Oh and I have a 2 yr old, so not much time for sleeping haha. WISH YOU THE BEST!!!-kara h

    email ooshibaba@hotmail.com

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  2. Hi Kara,

    I'm so sorry you are having to go through all that. I took 150mg of Zantac twice a day, morning and night, through the IV steroids and the oral taper dose after. For me, it helped with the upset stomach considerably. I wish I could tell you exactly what to expect next, unfortunately just like this horrible disease, everyone responds to the steroids differently as well. For me, I usually have a good 4 days of insomnia, then crash around the 3rd or 4th day of the oral steroid taper dose. I won't lie, steroids are rough. I know some with MS that love being on them- they love the energy. I personally, hate them, as the insomnia and irritability I get on them are awful.

    I do know you are definitely not alone, there are so many of us in this same position, fighting the same battles that come with this disease. And I personally think an occasional pity party is deserved- I mean we can't be all stoic and strong all the time.

    You know, MS can greatly effect your emotional well-being too. Not just from the stress of the disease, but literally mess up the chemical balance that effects emotions based on where your lesions are. I know I've had major bouts of depression because of MS. It might be something worth mentioning to your doctor.

    As for the fatigue, have you tried Provogil? It's a prescription med but it does help with the fatigue.

    Hang in there, Kara. I will keep you in my prayers, and I hope you and your family have a wonderful Christmas. Feel free to drop me a line anytime :)

    Take care :) Mis

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  3. Hello, I am on my 2nd 5 day steroid infusion within 3 months, have terrible stomach pain. Taking prilosec, doesn't seem to work. Any suggestions???

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  4. I'm so sorry you're having to go through all the steroid infusions. First, I would make sure your doctor knows, because he/she may want to check to make sure you don't have an ulcer. Steroids are really hard on your system, so anything out of the ordinary should definitely be reported to your doc. In the meantime, I find if I eat a rather large meal and take a 150mg Zantac about a half hour before the infusion, I don't get the upset stomach. Also, you may want to request to have your drip speed slowed down. It's not fun spending extra time hooked up, but for me, it really helps minimize the side effects. Best wishes to you :)

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  5. Dear Mis,
    After being diagnosed with MS I elected not to take Solu-Medrol. It took a year of suffering through the many physical, mental and emotional things that happen to those of us with MS. My family and friends were very much against me taking the therapy. It is truly a process we each go through trying to understand our bodies. My MS is in my spine and waist down. Each of us with MS have different symptomology. During that year I had debilitated so drastically I decided that the quaility of life was the most important thing for myself. With quality of life we can be our best with the family and friends we love so much. The first infusion treatment although difficult gave me the quality of life that MS had taken away. I have also added Provagil to my daily medications. That is again added to the quality of life. I have infustion every 8 weeks for 3 days. I was in a wheelchair. I now walk with the help of a rollator, my car has been converted so I drive with hand equipment. And I get to spend the good days with the family and friends who were against the steroids.

    I start drinking lots of ginger ale the weekend before I start infusion on Wednesday. Ginger plumps up veins, it also helps with absorbtion of the medication. I found starting my Zantac on Monday, treatment starts Wednesday.

    We all want quality of life. So we face this treatment because of the love we have for family friends and life.

    Keeping in mind your neurologist need to hear everything you are going through. Some doctors are very clinical and great. I am the type of person that needs "warm and fuzzy". After 8 cold hearted neurologist I found a great neurologist who listens and actually hears.

    Best to each of you and your journey.

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  6. I am off to get day one of my first 3 day steroid infusions. My eyes (optic neuritis) are what is my problem now. I was dx'd in 1988 and have luckily been MAJOR symptom free, with bouts of spasisity (spelled wrong) and numbness, cognitive issues. But can still function and i thank God daily for that. If i loose my eyesight, i cannot do anything. I have to do this today. I love photography, bead work, stained glass work, everything that involves the eyes. The eyes started up a few weeks ago and i had almost forgotten I had MS. After i finish today will try to post again.

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  7. i have been dignosed with progessive ms its been a struggle for 3 months i have to have a
    steriod inffusion and kind of nervouse
    i cant feel much from my knees down
    reading on other people that has this helps alot
    Gina
    i am 34 and have two teenagers

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  8. The three day infusion proved to be too harsh for me so I now have a much lower dose administered every sixty days. It takes a lot less time, only a hour or two. The benefits are not as dramatic but the lows are not so low either and I do not have to "step down" with pills. Just something to consider.

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  9. I was just diagnosed Dec 19,2011 with relapsing remiting ms....had my 3 days in row steroid infusion....have bad taste in mouth,chest pains now but other symptons same.....find out Jan 6 if I start meds and if I get more steroids....I'm so blind sided and dumb founded about all this ......I feel lost and would like someone to talk to for answers of advise! Thank you Renee in Missouri

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  10. Renee, I'm so sorry to hear you're going through all this. If you need to talk, feel free to email me. justmythoughts@comcast.net

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  11. Hi, I just completed my first 5 day infusion procedure. During the week I experienced headaches, swelling, high blood pressure and fatigue. Saturday the first day of not having having an infusion was ok I did feel weird and had a thick pasty taste in my mouth. Then Sunday i wake up to my whole upper body Aching. I mean sore to the touch. I was very tired too. I felt this way for two days. Today I actually don't hurt as bad of course it is the holidays and could ' t reach my doctor so I just suffered through it. I searched the web trying to get an explanation of my personal experience but was unsuccessful. I'm wondering how much longer I have till I feel the good from this therapy!

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  12. Hi Teacher,

    The thing people don't realize is, when you're on that high a dose of steroids, the steroids literally take over your adrenal system. That alone can cause some wicked side effects, especially as you come off them and your adrenal system tries to regain control. I'm curious, are you on an oral taper to work off them? If not, in the future, I would highly recommend asking for one. It lessens the shock to your system considerably.

    As for when you'll feel better... sadly, no one can answer that. As for myself, I always feel worse right after. It's usually a week or two after I finish the treatment I finally start feeling better. Just like MS effects everyone differently, so does IV steroids. I know some people who love being on them- they feel fabulous and full of energy the entire time. I, like you, am not so lucky.

    My best advice is to contact your doctor if you feel you're not recovering or are doing worse. A little talked about fact- some people are actually allergic to steroids. The pain the describe makes me wonder about that in your case. If that is the case- all the more reason your doctor needs to be aware. Best wishes to you and I'll pray you start feeling better!

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  13. Just got diagnosed on Friday. Start a 5 day drip tomorrow and I'm starting to worry. This is all still new and confusing. Still more test to be done, another MRI, spinal tap, MRS etc... A lot to take in. Glad I'm finding people in the same boat as me!

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    1. My heart goes out to you, Wendi. I remember those early days of being first diagnosed vividly (in fact, I started this blog the day I was diagnosed in 2008). The best advice I can give you is to educate yourself as much as you can, it's truly your best weapon when trying to fight this disease.

      Best wishes to you and I'll keep you in my prayers.
      Mis

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    2. Hi, I just got diagnosed a few days ago with MS and just finished 3 days of steroid infusion therapy. Nobody told me about the crash. I feel like I have been run over by a truck and that I have taken 10 steps backward. I have days when all I want to do is cry. I hate this so much, why me? Does anybody know if and when I will feel better?

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    3. Yes, the steroid crash can be really wicked. I know when I'm coming off them, I swing between crying mess and raging witch.

      As far as the steroids, you should even out emotionally as the steroids slowly work their way out of your system. I know it's hard and incredibly frustrating, but the steroid mania doesn't last forever.

      Best wishes to you.

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  14. Like most of you I also have MS and am currently on another round of steroids. My issue this time is burning in my chest when I swallow. My doc also has me take Zantac twice a day with the steroid treatment but it just doesn't seem to be cutting it this time. I really hope it lessens soon. I've been eating Tums like creazy trying to take the edge off. Even water burns. Has this ever happened to any of you? Any advice?

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    1. I've never had that happen, however I have had horrible heart burn and nausea from steroids. I find eating a large meal before the infusion helps to lessen the nasty tummy effects a lot. If it continues to bother you, I'd definitely ask your doc about it. Best wishes to you :)

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  15. In September 2011 I was feeling unwell, I had severe Vertigo, dizziness and a general feeling of weakness. I took myself off to Emergency when my BP was 220/145 ( i suffer from acute hypertension and check my BP regularly). I spent the next five weeks in hospital being tested for anything they could think of, The weakness stayed long after the vertigo stopped. I had MRIS's and it showed multiple brain lesions.They talked of possible MS or mini strokes but noone could give me a definite diagnosis. I had two weeks rehab to help me walk again, the weakness and fatigue made it difficult to walk anywhere.I went back to work and tried to work shorter days so I wouldnt get so tired. I saw the neurologist from the hoispital 3 more times but was disatisfied with being dismissed and I didnt feel like he was lisetening to me, especially after he wanted to treat me for migraines when I wasnt suffering from migraines ..i had a slight headache but that was the least of my concerns. I got a referral to another neurologist from my GP ...this one specialised in MS. I saw him yesterday and have got to say that it was the most enlightening and understanding consultation I have every been to. I do have a lot of the indicators of MS...he feels the results of all my tests, my MRIS and my symptoms indicate I am suffering from MS....and finally I will start treatment for it.He starts me on an IV steroid treatment next week.He even encouraged me to research MS as much as I like , something the other doctor discouraged. So many of my , what seemed liked, obscure symptoms , are explainable . I was seeing a cardiologist as I was having angina like symptoms. My heart is fine and the is no apparent reason for the chest pain.My neuro feels this is more likely MS hug. Spasms in my neck, tingling in my back and buttocks, numbenss in my feet and hands....these are all symptoms of MS. My situation isn't different from others i have read, many people have experienced the same. I am glad i sought a second opinion...I am not happy I have MS,,,but I am relieved it has a name...then it just leaves me with the job of getting on with my life and dealing with it. My concerns about the IV steroids is the possiible emotional effect eg. depression and the insomnia.I am already not able to sleep well because of muscle aches and bladder problems. It does help to read your story and sharing mine does make me feel better but of course there is always the fear of the unknown ...MS seems to be good at perpetuating that.:)

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  16. I was diagnosed in 2008 and for a short period of time I almost felt like myself. Now my arms and legs are weak again and the cognitive is really being affected. I feel extremely irritable, no patience, with many strange feelings in my body. I've been offered recently steroid infusions. But I can't make my mind up. My vision is worse and I'm afraid I'm going blind. Just can't make up my mind

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  17. This is the night of my third steroid IV and I am suffering a lot more than I have in the past. It's my third time on the treatment and I hate every second of it. The insomnia is in full force and the acid reflux is going strong, I also have a very sore mouth, like I've been chewing all of the inside of my lips and drinking drinks that are too hot, this happened last time too but not to such an extent. I would avoid this treatment if I could but I am losing my vision, I am finding day to day life very hard now and am having to use a white cane to make my way around (the little that I can). Truth is I've never really reached out to others with MS before, I suppose I thought if I ignored it after I was diagnosed and paid it no attention it might go away. But tonight I'm laying here, full of anxiety, feeling the aches and pains worse than ever struggling to even type because of my vision and feeling genuinely frightened and alone. Reading some of the other comments on here has helped a little with that, so thankyou. Life can be so immensely hard at times, it can be scary, thrilling, wonderful and painful and sometimes it can test us like we've never been tested, and when that happens, it is nice to know that there are others out there who understand. My love to all of you X

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    1. Hi Matthew,

      I'm so incredibly sorry you're having to suffer through this crap disease and the IV steroids that come with it. I absolutely hate it. For me, having vision issues is terrifying. I'm praying that the steroids will help to resolve yours a bit. Just remember, the visions issues don't rectify overnight like some of the other symptoms of MS do with IV steroids. It can take your eyes a couple weeks to "come back" to where they were before the exacerbation.

      I'm not sure if your doctor told you this, but I take Zantac 150 every morning and night while on steroids. It really helps to stop the heartburn before it starts a lot. I also get a prescription sleep aid just for the days I'm on the steroids. I found that out the hard way after being awake for 3 days straight after my first infusion. Maybe if you call your doctor, he can call a script in for you? So you can sleep? Even with the sleep aid I only slept maybe 3-4 hours a night but that's a lot better than not at all.

      I know you're going through so much right now but you're not alone. You did the right thing reaching out to others with this disease. Sometimes, just knowing others "get" you and have walked in your shoes can make all the difference in the world.

      I'll keep you in my prayers.
      Mis

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