Everyday Life With MS

Experience Tips Real Life Solutions

Catching Up


lasvegas-216It’s been a while since I’ve last posted.  I was having a hard time functioning before.  Just getting through everyday living was a real challenge.  But now, life is pretty good…no, it’s great! 

I finally determined along with my doctor that I am unable to handle Rebif.  He recommended taking a two week break to get the drug out of my system and then start on Copaxone…again.

Well, my two week break has turned into 4 weeks.  I feel really good, my energy level is back up, I don’t have as much brain fog and my tremors have really subsided.  I am still not who I once was before my initial onset of MS.  I suffer from nerve damage that may never repair itself and I still fatigue very easily.  At least now I have a quality of life I can appreciate. 

I wonder though, how long will my good health last?  Your guess is as good as mine.  I am enjoying everyday, my daughter, my husband and being more active than I was over the summer. 

Questions For My ReadersI know many friends who have MS and don’t treat themselves with any drugs.  I used to think they were nuts…but not anymore based on how I am feeling today.  What about you?  What are your thoughts on drug thereapy or other avenues of therapy.  I would love to hear your feedback with regards to those questions, to treatment options and answers to these questions:

  1. How many of you have have stopped taking drug therapy for MS?
  2. Have you replaced drug therapy with something else?
  3. What are the major drawbacks of not taking a drug therapy?
  4. What holistic approaches have you taken?
  5. What tips do you have for living an active and productive life with MS?

Looking forward to hearing what you have to say.  Until then…

Stay healthy, keep positive and continue living your best life

xo

Lora

December 3, 2008 Posted by | Everyday Life, Fatigue, Pharmaceutical Therapies, Relapses, Wholistic Therapies | , , , , , , , , , | Leave a comment

Are Meds The Majority Of My Problems?


It’s almost 3am and I can’t sleep…again.  I was woken from a sound sleep with muscle and joint pain.  Last night was an injection night.  As I wait for the pain to subside, i am wondering…are my meds worth it? 

I take rebif three times a week.  I have low energy levels, brain fog, and confusion.  I think it’s due to lack of sleep.  Would my body be healthier if I went off Rebif?  It would certainly rest when it’s suppose to.  I wonder, am I doing more harm right now?

I am still working on my diet.  It’s so hard.  I must cut out everything I love.  I believe it’s working though.  The last few days have been good days…I’ve almost felt…do I say it?  Normal!

What are your thoughts when it comes to the therapies you’re on?  Let me know.

xo

Lora

August 27, 2008 Posted by | Everyday Life, Pharmaceutical Therapies | , , , , , , , , , , , | 3 Comments

Trouble Breathing


Hello –

Still recovering from the drug mishap courtesy of Caremark.  New developments include trouble breathing.   Has this happened to anyone else before?  Let me know.  I’m not sure if it’s a drug issue or an MS symptom.  Thoughts and comments welcome!

July 10, 2008 Posted by | Pharmaceutical Therapies, Symptoms | , , , , , , , , , , , , , , , , , | 1 Comment

Life Is Hard Enough Without Help From Your Pharmacy


Ok, I’ve been having a hard time for about the last year.  I’ve tried everything from diets to holistic healing.  I started feeling better about two months ago until my mail order pharmacy was acquired.

I’ve been on Rebif Since October 2007.  Pharmacare my mail order pharmacy took great care of me ensuring I had my meds when I needed them until they were acquired by Caremark (CVS).  That’s when things took a turn for the worse!

Caremark called and insisted that I have my Neurologist fax over my prescription so they could fill it.  I was running very low on my prescription.  As a matter of fact, I only had two injections left and I was messing around with prescription faxes and requests – a lot of red tape when all I really needed was to take care of my health.  Caremark was more interested in their paperwork!

My Doctor’s office complied with their request and faxed the only prescription written for me regarding Rebif.  The prescription was dated October 2007 and instructed a titration pack for two weeks followed by a maintenance dosage.  The date this transpired was May 2008.

Caremark sent a titration pack to me.  I was desparate for my meds so I began taking it.  I never checked the box/dosage since I had been on maintenance since October 2007 – 7 months ago – I was operating on Auto Pilot.  Plus…Pharmacare had always taken such good care of me.

I started feeling really sick.  My symptoms got worse, I had major hot flashes, couldn’t sleep, had severe aches and pains in my muscles, bones and joints and fatigue like you wouldn’t believe (above and beyond the normal MS fatigue which is hard enough to deal with on it’s own).  Anyway, you get the picture.

By chance, a nurse from Sereno called to conduct her routine check-in.  She is great!  She always gives me some great tips to help ease any side effects I may be feeling.  While we were talking, she had me check my box of Rebif which is when we discovered I was taking titration doses. 

Yikes!  When we discovered the error, she put herself into action and got me a new box of Rebif immediately. 

When speaking with the folks at Caremark, I got a half hearted apology and the excuse of “The person who made the mistake is only human”.  Well, excuse me but I am only human too and her “mistake” has cost me 6 weeks of my life, extreme pain, fatigue and loss of time with my 7 year old daughter – something that can never be replaced.  And guess what?  I am still not over her mistake.  I haven’t completely adjusted to the correct dosage of Rebif.

Any of you who know what it’s like to adjust to the maintenance dose of Rebif knows what I am going through.  Lucky me, I got to do it twice!

Anyway, I really wanted to know what Caremark was going to do to make sure this didn’t happen to anyone else.  To date, I haven’t gotten an answer.  I also wanted the executives as Caremark to know what has happened but I have only been able to speak to “supervisors”.

I did report the mishap to the FDA but still, I want to know what Caremark will do in the future.  This is a serious problem and should be dealt with swiftly…hah!  Accountability today is a joke!

Has anyone had this experience with Caremark or any other pharmacy?

July 8, 2008 Posted by | Pharmaceutical Therapies | , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , , | 3 Comments

Relapsing


Tingling, tremors and brain fog!  Oh my!

That’s been life these past 3 days including the usual loss of balance, blind spots and falling asleep standing up!  Yikes!

I started a three day course of solu-medrol and finished it today.  It’s my third treatment in six months.  I haven’t really seen a huge improvement with this treatment – ever.  I still have the symptoms that originated 6 months ago plus some more.  Has anyone else had this experience with solu-medrol?

For me, solu-medrol is a sedative.  I fall asleep during my treatments and I am really lethargic the rest of the day.  I also get the metallic taste and for me it lasts and lasts as well as nausea. 

If this treatment doesn’t solve anything in the next month or so, my Neurologist is going to put me on a clinical trial.  I will let you know what it is when I find out and tell you if it’s something worth checking out.

In the mean time, let me know which treatments have worked for you.

Stay positive,

Lora

March 21, 2008 Posted by | Pharmaceutical Therapies, Relapses, Symptoms | , , , , , , , , | Leave a comment

   

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