Setback- just sharing.

[smalltowngirl]

I knew Ocrevus put me at risk for viruses and infections, and I’ve dealt with that since I started the DMT in March. However, this last week was really tough!

After catching a cold from work, it turned into a TERRIBLE cough. I went to PCP last Monday, and my doc gave me antibiotic and steroid shots and prescribed antibiotics and steroids. Easy enough! But instead of getting better, I just got worse. I was at the ER Wednesday morning and diagnosed with Pertussis. 🤦🏻*♀️

In the midst of all this, I ran out of Cymbalta (prescribed along with Gabapentin for nerve pain). By Thursday evening, I was in a low place. I’m telling y’all— I felt CRAZY. I was sick to my stomach and dehydrated, so couldn’t take my meds. My eyes felt like they wouldn’t focus on anything and I had a horrible dread that consumed me. I couldn’t rest because of the terrible cough... ended up back in the ER Thursday night.

They told me I was having withdrawals from the Cymbalta, since I hadn’t had it for several days at that point. They just treated my severe nausea and sent me home. My Cymbalta was refilled. I finally showered and changed my bedsheets Saturday. Went back to work this morning!

At the ER, a nurse with MS told someone she doesn’t take any meds and has been in remission for many years. Experiences like this make me wonder if she’s not handling this correctly! Between the days of sickness after Ocrevus and the weakened immune system it has left me with, is this really the right choice for me?

[Myoak]

Dear Smalltowngirl,

You indicated that you have been battling viruses and infections since starting Ocrevus in March. Question... has this situation been unrelenting, pretty much continuous all summer? More infections now than prior to Ocrevus?

Please carefully document all infections and treatments chronologically so you have a good record for your neurologists to review accurately at your next appointment. BTW, what did they have to say about your constant infections at your last appointment? They may ultimately conclude that Ocrevus is not appropriate for you. Any record you have can only be helpful in whatever determination they make.

I read through many of your posts to get an understanding of your situation. I was a bit surprised that an ER visit resulted in antibiotics and steroids. Sometimes steroids can make an infection worse. In the future be sure to call your neurologist before agreeing to steroids; he may make a different call. Perhaps, your neurologist was informed, I hope so, but I doubt it. This point is very important as I'm sure you will note.

I wonder if you are exhausting yourself by your daily routine. Girl, you have MS. Your symptoms and lesions appeared rather suddenly and quickly. Often, an MS diagnosis can take years, yours took a couple weeks, it appears. That may indicate a more aggressive course than many PwMS experience. Based on indications of an aggressive disease course, you chose wisely in attacking MS with a more aggressive DMT even though the jury is still out on whether Ocrevus is the right one for you. I can tell you this... from a purely mathematical probability you make a very good DMT choice. However, only time and observation (hopefully recorded in a journal or record you take to your neuro appointments!) will tell if Ocrevus is the right DMT for you.

You can't do everything you did before MS, especially if you have an aggressive disease course at present. Please don't kill yourself trying! Consider a family meeting to explain your fatigue. Explain, with heart, how you feel and what additional things you hope your daughters and husband can help out with even though they are helping you so much, already.

I don't know what kind of work you do but it seems you sit at a desk and use your eyes a lot. Using our eyes makes us tired. I think most know that but perhaps not everyone. You may require more breaks, especially helpful to me are stretching exercises.

Mentioning weight to a woman may be the last thing on earth a man should ever do. I would not unless I felt a connection to you as a sincere friend. I have no idea whatsoever if you have a weight problem. Nor do I need to know. So why mention it? Because I have the strong suspicion your diet is not under control. It does not matter how our bodies are shaped or what we weigh, we simply must eat a healthy diet. It makes a difference in MS and I can provide studies if you like.

I am not necessarily suggesting one of the several diets built for MS. I am simply talking about eating a sensible, balanced diet. And, I believe there are a few supplements which are helpful for people with MS, also. Certainly, EGCG green tea extract is one I would recommend as having supporting research (which again I can provide or can be found on this site). Also, alpha lipoic acid, or ALA, is another I'd recommend for the same reason.

Please get serious about your food choices. Your family is making great efforts for you so you bear down, also. And, damn that sugar! Get serious, MS is. That's all I going to say about that.

Now for more scolding... you ran out of Cymbalta. You know better. Get it together, slow down and make certain you have the prescriptions you are taking. Don't be so busy you are not prioritizing your health! Hurry only makes life more difficult.

Lastly, I agree with you... there has not been enough time to give Ocrevus a proper try, yet. But keep a record because your record is exactly what your neuro needs in making good judgements about your treatment.

You are in my prayers and thoughts for good. You are a sweet lady and wonderful blessing in your home with family, at your job with co-workers, and here at this site where you are loved and appreciated so much. In spite of the incredible challenges you are currently experiencing you are delightful and fun. You are truly a joy. I respect and like you so much as everyone reading your posts do, also!!!!!!

Things will get better. Yes, I believe MS in your life is going to stabilize first, and then get better. I believe in a year from now, you will be much better than today. I hope you feel better before lunch today! Why not? It could happen!

Blessings, Dear One!

[pennstater]

Sorry to hear about your illnesses.

I am on Tysabri and usually get 1 nasty respiratory infection a year, which eventually I wind up needing steroids, and asthma meds to help clear after two months.

The odd thing: I was always succeptible to bronchitis and other respiratory infections, my Mom was too. I just have a hard time clearing since on Tysabri.

Along the lines of Myoak's post, I did notice that when I do get sick, it is usually after running myself down, then because I am wiped out, I am not exercising or making the smartest food choices (make the easiest and quickest). Based on a fellow Tysabri user suggestion, added Vitamin E and C to supplement list. It is usually in Winter I get sick, so we will see how things go.

I share your frustration. But for me, the benefit is worth it. No new lesions and no progression.

Please find some time to take care of you. Hope you turn the corber.

[oceanpride]

Also you were down with a cold when you got your last infusion. I’m imagining that wasn’t for the best maybe. Hopefully things will stablize but it’s looking like us Ocrevus people may need more time to get over those bugs. It’s been over a month and I still feel like I’m not rid of the dose I had.

[Jules A]

There may be some lucky enough not to require a DMD during their lifetime but I'm skeptical of them and terrified for myself to even consider it.

Personally I'm trying to stave off progression. I can't say if my medication is doing that or if it is the mild course of my disease, for now, because we all know it can change at any time.

What I know for certain is that:
MS is a chronic progressive disease. I'm not taking any chances.

[smalltowngirl]

Myoak,

Wow, THANK YOU! I'm grateful you took the time to read some of my posts and share your thoughts and concerns. That shows such insight and I know it took time on your part to type that response. Very kind of you to do that.

You are correct. My diet is out of control and this sickness was the smack in the face I needed to get control. I have gained weight since diagnosis (almost 40 pounds ) but have started to lose some of it. The more I read and learn about MS, the more I realize how crucial diet is. I hope to report back to everyone soon enough to share that I continue to make healthy choices-- I know it's not about the number on the scale, but more about being proactive with my health and making intentional choices when it comes to food. It will certainly be an effort but I'm sure I can do it.

I definitely note every new symptom and illness. I keep an ongoing, dated memo on my phone. I follow-up with my neuro in December and hope to have plenty of time to go over all concerns with him. He's been pretty patient so far and responds quickly to email messages, so I feel like I can leave that appointment with more knowledge and feeling better about this med and it's effects.


pennstater,

You're correct. I think I was run-down and exhausted. I'm learning how much this truly affects every system in my body.


oceanpride,

I fear you're right. I probably should've waited. This was a tough lesson to learn. I'm so sorry to hear you're still "recovering" from your last dose.


*Y'all, thanks so much. I just can't tell you how much I value your input and how thankful I am for msworld.

[smalltowngirl]

What I know for certain is that:
MS is a chronic progressive disease. I'm not taking any chances.

I know it. You're so right.

[Jules A]

Sending good vibes your way and please keep us posted!

[Mamabug]

Sending good vibes your way and please keep us posted!

Me too. Sending good vibes your way.

[MisterMan]

smalltowngirl, sorry you’re facing these troubles.

Wishing you well and hope you feel better!

[smalltowngirl]

Jules, Mamabug, and MisterMan,

Thank you all! I am feeling better! I felt and appreciate your support.

[Carolinemf]

Been mia for a few days- so sorry you have been having a tough time of it STG.