IV Methylprednisolone, Cymbalta and Utter Frustration! In need of help!!!

March 19, 2009 at 11:43 pm

Hi Don and all,

It has been awhile since I have posted, but I read and search the blogs for info all the time. I was diagnosed with CIDP about 5 years ago. I tried IVIG for over a year, but it never truly helped me. Given the cost and time commitment I gave up on it. The results just weren’t there for me.

I tried Cellcept, but after several results it didn’t change much. In the meantime, my pain level soared and nothing much was helping. That’s when I switched to oral Prednisone. I started at 60mg/day. I felt better almost immediately. My CRP and Sed rates came down (markers of inflammation). I was less fatigued. Pain was less. It really felt great to be able to lead a more normal life.

But, my Doctor was afraid to leave me on Prednisone for long-term therapy. The drug was not designed for that purpose. I did gain weight and my face did get kind of puffy. I started cutting back my dose. Almost immediately, my symptoms came back. Now I am at 7.5mg a day and have all my problems back.

I just started IV Methylprednisolone 500mg this week. The plan is for me to have it once a week. So far, I do feel a little irritable. My pain is pretty widespread and my energy is non-existent. But, I have only done it once. Is this something that takes time? It’s confusing to me because oral Pred. was so fast acting. I guess I just don’t know what to expect. I did see a drop in my Sed rate today. Maybe you just have to be very patient with the IV version.

Have any of you heard of or tried Cymbalta. It is supposed to help with pain and anxiety. There have been studies that indicate it could really help with Fibromyalgia/ CIDP pain. My Doctor asked me to consider it. I just wondered if any of you had experience with it.

I guess I am just having a down day and need to write to people that understand. It’s just so hard to feel crappy every day. I know that it could be worst, but that knowledge isn’t helping much today. I just want to wake up without pain and have a really productive day. Instead, I watch the clock so I can know when I can finally take more pain meds.

I am also seeing that stress can really cause flare-ups! My husband got laid off from his job in November. He can’t find anything! Plus, he just came home from the hospital after having hip replacement surgery. It just couldn’t be put off anymore. Plus, our insurance is over the end of the month. From then on we will be paying for it ourselves. I guess we will pay for it from his unemployment checks! He can’t get around yet, which means a lot more stuff for me to do. Assisting him is just throwing me over the edge!

The poor guy is doing really well considering his circumstances and that’s all I can do is feel bitchy. Now, I have to go get the newspaper, feed the dog in the AM, water outside, take in trash cans, etc, etc, etc. Bring him drinks, fix meals, answer phones, help him dress, get him toilet paper, etc, etc, etc.

BOY, I REALLY DO NEED TO VENT!!!! I honestly feel like I am going to explode. I know that my husband doesn’t get it. I also know that most of you probably do. Please post back so I have a chance at avoiding a stroke! Just knowing somebody understands will really help me.

By the way, my muscle cramps went way down when I added Potassium. (K-Dur 20 meg) I found that if you can keep it up around 4.0 that will eliminate spasms and cramps. Please check it out because they really hurt.

Thanks for giving me a place to post my feelings. A place where I won’t be judged too harshly.

Best to all of you,
Sandila 🙁