I finished my 3 day Solu Medrol. Now what?

[Soportsmomma]

Today was my last day taking that awful medication (for this round). I feel so tired and lightheaded from it. I know it can take up to a week or two to get the full effect of the medication, and things are already improving. I got feeling back in my legs and can walk much better. The vertigo/vomiting is gone. I don't see the MS specialist until March 11th. My question is (being new to this all) what do I expect now? What should I do? Right now I'm sitting with my swollen feet up on the couch!

Also, has anyone been successful in picking up long term disability insurance after their diagnosis? This came out of the blue and I am completely unprepared. I don't know where to begin looking for disability insurance, though I plan on working for many years to come.

Sorry, I am rambling here.

[cjtmn]

You are in good company here! I was just Dx'd in November 2015, and after leaving the last appointment with my specialist, my only "to do" was basically wait for the DMT paperwork to go through & get started. That took 3 months. And I distinctly recall leaving the appointment thinking "now what?"

You've just been handed a LOT of information. For what it is worth, here is the criteria I used in deciding:
1. What dosing did I think I would stick with?
2. What side effects was I willing to live with?
3. What is my neurologists suggestion?

Lastly, as has already been mentioned, just know that if whatever you choose doesn't work out for you, you can always switch.

I am journaling about my experience with Plegridy if you are interested. Injection #2 is this Friday, so I will post again after this weekend.

Hang in there! Come back often & let us know how you are doing. March 11 will be here before you know it.

Cheryl

[immisceo]

Breathe!

Prednisone tapers are an option, but plenty of neurologists do not routinely prescribe them. Perhaps it will help you, but it's not a case of you having missed a standard part of the treatment.

The amount of DMTs to look into is overwhelming, but when I was at the same stage five years ago, I tried to think of it in terms of how lucky I am to be overwhelmed by options after diagnosis versus being overwhelmed by absolutely nothing being available to help slow down this disease. This is what faced people with MS barely a generation ago. It was a case of "diagnose, and adios". There was really nothing to be done.

I tried to break it down to "what medication model can I adhere to, long term". I'm not someone who wanted a daily or every-other-day injectable, so that winnowed down a few straight away. I also considered what potential side effects I was willing to deal with and what not. Remember, the side effects listed are POTENTIAL side effects. They were mentioned by people in the clinical trials conducted prior to the drug's approval and thus appear in the drug's literature. They are things that might happen, not things that are guaranteed to happen.

My thinking was "I can handle flu-like symptoms. I'm not in the mood for lipoatrophy". So this also helped me narrow things down. I knew neither might happen, I knew both might happen, but I weighed my willingness to deal with them.

Yes, DMTs can take time to work, and in our MS 'career' most of us will revisit what medication we use based on how well it's working, the current new available medications, and our reactions to them. This is just a part of having a chronic disease that thankfully has a very vibrant research and development component.

A swift diagnosis followed by the need to pick a medication is overwhelming. I've been there. But things to settle down a good bit once these things have been dealt with. It's frenetic and confusing and intense at the beginning, but try to focus on the agency you have. You are actively doing something to combat this. And that can feel empowering.

[Soportsmomma]

Thank you for responding! I actually ended up calling my neuro because the chest pain did not subside. He then told me I was supposed to be doing a Prednisone taper, which he promptly sent to pharmacy.

I have spent a lot of time researching the different DMT options. They are, at best,confusing and frustrating. I have learned of things I hadn't even considered, like one takes up to year to start working, some are only usable for a couple of years, etc. My mom (she is a nurse) and I are going to go over all of them with a fine toothed comb before my specialist visit. To me, some of them seem very scary and very risky. This is just all so new and I am really going out of mind to pull it all together!

Thank you Corrie!
Tracy

[Corriel]

Hi there! I have not had the Solu Medrol myself but others have described it as decent but maybe a crash after being revved up on the steroids.
Not sure about the disability insurance. Depending on where you live, maybe contact your local MS Society/Chapter and see if they can provide you with some information. They usually have something to send people who are newly diagnosed.
Not sure if you have made a decision about disease modifying therapy medications or not but if you are considering them you may want to get the basics on what is out there while you wait for your neuro appointment.

Hang in there!
Corrie