Solumedrol

[Hazelsparkey]

My son of 32 years old has just been recently diagnosed with MS. The Doctor said that the number of lesions in his brain are to many to count. However he does have two large active lesions right now.

The Doctor wants to start him on a five day course of Solumedrol via IV. This will take about two hours each day. My son is very concerned about his work and does not want them to know about his disease. He doesn't know how he is going to get the time off from work to have this done.

I was wondering what would happen if he doesn't get the Solumedrol infusion and also if there is an alternative.

I would greatly appreciate any input on this. Thank you

**Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

[LisaL77]

His Neurologist can advise him if he desires to have the infusion at home or he can go to an infusion center. Do ask about the scheduling for both to see if he can work it around his schedule.

He can always take the time as 'personal issue to take care of' taking two hours of paid time off every day. He does not have to reveal anything.

I had mine at home and took the whole week off because it made me sick. There are side effects to the drug that were very unpleasant.

I hope you are aware they will be putting an IV port in his arm/hand that will stay there for a few days each. I had 3 IV ports: 1st port was for day 1. 2nd port was for days 2 and 3. 3rd port was for days 4 and 5. That might be noticeable, even if he covers it.

I was stumbling around the office like a drunk for a month before diagnosis. It was my personal decision to inform my employer of my MS right away. My manager knew about my headaches, trigeminal neuralgia, numbness/tingling on entire right side and balance issues while my PCP was determining a Dx.

I am glad I told them. They are aware that I am covered under The Americans with Disabilities Act. They have been heavenly regarding flexibility and being understanding and I appreciate it.

Your son does not have to reveal anything. One option is to have the doctor fax a note to Human Resources stating he will be taking FMLA for a 5 day period. Another option would be to take vacation hours off at the end of each of the 5 days and say absolutely nothing.

I realize it is very difficult to maintain privacy and balance both life and profession. I hope he finds a method that works.

[its2much]

My insurance company insisted

that the infusions be done at home.
I had one port for the entire five days. The infusions were done at 12 hour intervals (7AM and 7PM roughly). It took about 75 minutes for each infusion.
I later had another episode of optic neuritis and followed the same protocol.
If you wear long sleeves, the port will not be visible.
Hope this helps.

[Redwings]

Hi Hazel:
The procedure for getting Solu-Medrol IVs varies, depending on individual circumstances and the customary way a person's insurance handles it. Sometimes outpatient infusions are done at a medical facility (e.g., in a nurse clinic or infusion center) and sometimes the infusions are done at home (by a nurse or patient self-administered after being set up by a nurse). Your son will have to ask what options are available under his medical insurance.

I've had dozens of 3-day Solu-Medrol series over the years. Back in the beginning, I had them done by a home-health nurse. But for the last 15 years or so, I've done them at my medical center. Sometimes I go during the day, sometimes at night, since I'm lucky enough that the nurse and infusion clinics have night hours. Generally, insurance companies will send a home-health nurse at night if there's a medical necessity for a night visit. However, because night nurses are more expensive, insurers won't send one at night if it's only for the patient's convenience.

Usually the infusions are done once per day (in typical MS, there's no reason to do them more often), but that can vary. Two hours per infusion sounds about right for a first-timer. The rate of infusion may change during the series, depending on how the patient responds, but maybe not.

Usually, for the nurse's convenience but also for the patient's, there's little infusion device (a catheter with an injection port) called a hep lock placed in a patient's vein and left in place for several days. (There's a nice photo of one at http://www.ehow.com/about_4605949_wh...arin-lock.html.) Usually a hep lock is placed in a vein in the back of a hand, but they can be placed elsewhere. They're not big, but they can be awkward to cover for showering/bathing and going out in public.

For the patient, the hep lock eliminates the need to be stuck repeatedly, and for the nurse it's a time and hassle saver. However, I haven't used a hep lock for more than 10 years. I always get stuck fresh each time. I've had so many IVs that not having an irritating hep lock left in place has saved the integrity of my veins. Also, being stuck fresh each time allows me to go to work and carry on my daily activities unencumbered. So your son doesn't have to have a hep lock if he would really rather be stuck fresh everyday. That being said, for a first-timer, it's probably more advantageous for him to "go with the program" and get a hep lock for his infusion series.

As mentioned by another poster, it's difficult or impossible to maintain privacy when it comes to steroid infusions. The time off of work is one reason. Certainly there's the issue of time off for the infusions themselves. That can be done with vacation time or sick time, or under the Family and Medical Leave Act (FMLA). If your son can get his infusions at night, the work time issue goes away.

However, as also mentioned earlier, the steroids themselves have side effects that can be very unpleasant. Your son might need to take time off just because he doesn't feel well enough to go to work. Now that I'm a steroid veteran, I can manage at work during an infusion series. But back in the beginning, I had a job with sick leave coverage. The treatments knocked me for such a loop that I took two weeks off of work each time. Your son won't have to disclose to his employer the details of his medical absence, but his absence will be noticeable.

There are a couple of other options for treatment that can eliminate the need for time off of work for administration, but they won't eliminate the side effects of the drugs. And they have their own disadvantages that might be too complicated and stressful in their own way for a treatment first-timer. And the side effects might still cause your son to feel so unwell that he has to take time off of work anyway. So the customary procedure of IV administration might be the best course of action.

The purpose of steroid treatment is to suppress inflammation, which will hopefully allow lesions to heal more quickly and help symptoms to subside more quickly. Research has so far shown that steroid treatment doesn't affect the overall outcome of MS, so your son doesn't absolutely have to have steroid treatment. The outcome of this "attack" will be the same whether he does or doesn't. Resolution of the symptoms may just take longer if he doesn't.

So, if he would rather, your son can just ride it out and go on as he has been. Some people choose not to take steroids, and that's OK, too. With MS, there are many trade-offs to be made, and the choices aren't often pleasant. Your son will have to do whatever feels right to him, based on discussions with his doctors. Whatever he chooses, I hope he feels better soon.

[Hazelsparkey]

Solumedrol

Thank you everyone for all the good advice. I told my son yesterday that I think the best way to do this would be for the Doctor to write him a note and take the week off from work. Especially because he doesn't know how this medicine is going to effect him. He claims that he has not experienced any further vertigo. Maybe he won't even have to have it at this point. Doctor appointment tomorrow so we will see what she says. Thank you again.

[LisaL77]

Hazel, I am not sure that the solumedrol was prescribed strictly to make his vertigo go away.

Redwings stated the following (changes in font format are from me): "The purpose of steroid treatment is to suppress inflammation, which will hopefully allow lesions to heal more quickly and help symptoms to subside more quickly. Research has so far shown that steroid treatment doesn't affect the overall outcome of MS, so your son doesn't absolutely have to have steroid treatment. The outcome of this "attack" will be the same whether he does or doesn't. Resolution of the symptoms may just take longer if he doesn't."

So, even if his vertigo went away for now, there are other symptoms or damage that could be 'cookin' even though he doesn't feel it.

I wish your son the very best in treatment!

[Temagami]

From what I´ve read, the steroid only shortens the duration, it does not make you any better in the long run. The side effects are very high blood sugar, potential vision issues, potential ulcer issues (my doc had me take anti-acids) and the hyper, hyper hyper insomnia for days. I doubt your son will get enough sleep while on a high dose. I was warned that I´d eat a lot, but I did not go on an eating binge- probably too shocked at the turn of events to be hungry.

There is an upside to telling your employer- the ADA is on your son´s side. I told my employer and now have an AC unit in my classroom and permission on file to park closer to the bldg. if need be.

[MarkLavelle]

There is an upside to telling your employer- the ADA is on your son´s side.

I may have an exceptionally good work situation (same co. for almost 28 yrs.), but I've never really understood what advantage there could be to not telling your employer about your dx.

Am I naive? Are there hyper-legalisms involved?

[Redwings]

... I've never really understood what advantage there could be to not telling your employer about your dx.

Am I naive? Are there hyper-legalisms involved?

Yes and yes.

[MrsBones]

I may have an exceptionally good work situation (same co. for almost 28 yrs.), but I've never really understood what advantage there could be to not telling your employer about your dx.

Am I naive? Are there hyper-legalisms involved?

It's mainly the potential for discrimination, negative reactions from co-workers and employers and the chance you'll be fired. Strictly speaking all of that is illegal and/or unethical, but easily skirted by employers. Not hard for an employer to come up with some lame reason you should be fired, when everyone knows that the fact is they think you can't do your job or you're an insurance liability or whatever.

You can face demotion or being passed over for a promotion you deserve. You have to deal with co-workers possibly blaming every little snafu on you and your MS. There's a million reasons for a person to stay in the MS closet.

You can take legal action, but you'd be in for a heck of a battle in most cases. Many people would just rather try and find a new job or retire, rather than try and fight.

I had great bosses when I was dx'd , a few nutty co-workers, but overall, I was fine telling everyone at work. I was lucky, though.

[Anthomaniac]

I am having my third Solumedrol infusion as I type this. My hospital system has at home infusion! They put in an IV catheter in your arm, hand, etc and then either teach you to run it, or they come to my house once per day to run it.

It's the best option, because it will fit my schedule. I have only had the metallic nasty taste in my mouth (which stopped after the infusion was done) and some hyper energy one day, but it was over before I went to sleep.

About telling work, I had to because of the sheer numbers of appointments in the last three weeks...and it's hard to hide an IV in your hand or arm.

I am lucky though my boss has been incredibly supportive, and I work for a very large financial services company. They know all the pitfalls of firing, laying off, under-employing someone with a chronic disease. Heck they even provide free confidential employee counseling, they have a team member network for folks with chronic issues, etc.

It help too that I am in a high skill area (quality assurance) and have had top level performance reviews the past three years in that position. It would be pretty obvious if I suddenly went from the top tier to mid tier or below.

Telling your job is your choice, but if you need to use FMLA at any time they will have to be told. Maybe google your company and illness or sick and see if there are any message boards out there with rants from employees or former employees.

Good luck!

[its2much]

At Home Therapy

Whenever I did the steroid treatment, a nurse came to my home, to put in one IV line - that was the only time I saw a nurse. IV therapy was for five days, 2 infusions per day.

[okhoney]

I just had 3 days of IV steroids at the end of march. I knew about the metallic taste but no one warned me about the terrible dry mouth and more importantly the 'Moon Face'. I woke up 3 days after the last infusion looking like the Michelin Man. You'd think someone would mention something about the fact that you could be barely recognizable to yourself in the mirror for a couple of days! I have 2 kids and also seemed to pick up any germs that we're floating around.

I was having a very slight problem with one eye and they sent me in for an MRI. Apparently, there was a real party going on in my brain but next to no clinical symptoms. My Dr. took me by the arm and walked me down to the IV suite.
My vision cleared up and I'm no worse for the wear now.

I'd advise you to go ahead and start ASAP.

[Hazelsparkey]

Update from Hazelsparkey

Good morning all,

We went to the Doctor's Tuesday. My son has 3 lesions on his cervical spine, C2, C3, C4. The Doctor said he needs to be agressive with his treatment.

The Doctor also said that my son has had MS for a long time, at least ten years. Actually it is longer as he had his first symptom at 18 but was not offically diagnosed!

A nurse is coming today to give the first infusion of Solumedrol and teach my son how to do it himself. I will be there also so I can learn too. After that he will begin Copaxone injections everyday.

We both got the paperwork for FMLA and gave it to the Doctor to fill out just in case it is needed. Turning it in to our employer is another matter. Not sure how we are going to approach that. My son and I work for the same company and we are also in the union. I know that he is protected under the AMDA however I am concerned that they will find some lame reason to let my son go. It is very touchy ground. Especially since our company is financially struggling and has cut many jobs.

I really don't know what the best thing is to do. Ultimately it is my son's decision to make. I just want to help him make the right one. He is very over whelmed right now. I feel so bad for him.

When the Doctor said he needs to be aggressive with is treatment now. That was scary to hear. The Doctor also told him he needs to start exercising. My son will need to make lots of lifestyle changes!

I am going to take him to a MS support group meeting this coming Tuesday. I hope that will help him to feel not so alone.

Thank you all for your support and God Bless all.

**Post broken into paragraphs by Moderator for easier reading. Many people with MS have visual difficulties that prevent them from reading large blocks of print.**

[MarkLavelle]

When the Doctor said he needs to be aggressive with is treatment now. That was scary to hear.

I suspect that by "aggressive" he mostly meant "start treating right away." Copaxone is considered a pretty conservative drug choice by most folks.

Backing up a few days, I can see I have been naive about disclosing MS to employers, just because I've been so lucky. I have no idea what will work best for your son, but I hope both of you find a 'safe' way to deal with it. Is your union strong enough to be helpful?