I received my 1st 2 infusions of Ocrevus at the end of December. Now...1 month later, it feels like my pain is worse along with my depression. I spent last night thinking of how I could end all this pain. I won't do anything, but it's just too much for me to handle. My doc suggested Lyrica for the pain but at $400.00+ a month I just can't afford it. This is after insurance payment. My husband just seems to want to ignore the fact that I have MS and says things like "Just get tough" or "Call you doctor if you need help". Is there a light at the end of the tunnel or is this it?
SHILOH, back pain and depression are both side effects of ocrevus. Please contact your doctor about the side effects.
Men are funny, aren't they? My guess is that your husband doesn't know what to say or how to help and really, could he anyway? Men are no good at situations they can't control, that have no solution. I "prime" my husband by saying something like, "I know you can't fix this. I just need you to hear me."
I didn't realize back pain was a side effect of the Ocrevas. I assumed I was a vicitim of genetics. My mother has chronic back pain. I did discover that bladder infections are more common with Ocrevas and a UTI often makes everything worse. You may want to get that checked out even if you feel asymptomatic.
I haven't gotten the depression. Actually, this winter is the best I've had in many, many years. Why? Good question. There's a mix of things I've started and the only way to figure out which one is the most helpful is to eliminate things. No thank you. I'll take feeling good any day and twice on Sunday.
My current regiment:
1. Acupuncture (swear by it!)
2. Addition of CO10 and Magnesium
3. Probiotic (Floregen3 available from your pharmacy as an over-the-counter. It has to come from your pharmacy because it has to be refrigerated.)
4. Excersise no less then 4x/week (I know it sounds hard and it took me over a year to develop a consistent regiment. I alternate floor and swimming in twos. Monday/Tuesday, Thursday/Friday. I lucked out in that my trainer also has MS and has been wheelchair bound for over 15 years. I can't work out to the level I used to before my MS got bad. He helped me figure out to what level I should be working out in order to have enough energy to get back out of the gym and not be wrecked for days.)
5. Light box
6. Wheelchair. (This was an excruciating mental hurtle. Once I got over myself, I am in love. I don't have to worry about balance or negotiating every single step. It's freed up a lot of mental energy which has lessened fatigue. My world opened back up. I go to concerts, long outings, and trips without concern for the walking part. My upper body is still strong, so I use a manual chair and wheel myself. I still have the upper body strength to shlep my chair in and out of the trunk. I have to admit I get a bit smug about my skill level and smirk when I think about how able-bodies wouldn't be able to do what I do without significant practice.)
7. Diet, (I know there's no recommended eating pattern for MS, but I'm finding it really does matter what I eat. It probably does for everyone, but I feel it more immediately and more acutely.)
Ocrevas is a cost/benefit analysis. In small ways only noticeable to me, I am better. I feel I am holding ground. I'm not so scared anymore of huge changes on the close horizon. And so I am more confident and willing to learn to negotiate my current challenges.
On the other hand there are gremlins for me like lower back pain, increased UTIs, and an even further lowered immune system in the heart of flu season.
Baby steps, my friend. Every long journey begins with a single step. I'm 18 years post diagnosis and it's taken me that long and many missteps to get where I am. Try to forgive your husband. He would fix it if he could.
Thanks so much for your advice. I'll be looking into some of the healthier alternatives you mentioned. Acupuncture hasn't worked for me...exercise is rough at this point but I have started.
most symptoms of ms aren’t noticible and only other people with ms can really understand the pain. Ms has been underestimated for years. I’m sure your husband just doesn’t know what it’s really like it’s very hard to explain to someone who hasn’t experienced it. I’ve found that smoking marijuana or taking CBD oil can really help with the pain and it’s cheaper
Hi shiloh. Just an FYI that I sent you a private message. I found some patient assistance resources here if you might want to see if they can help you with the Lyrica: http://www.needymeds.org/brand-drug/name/Lyrica
Thanks all for your advice. Started exercise although it very difficult right now. I was already diagnosed with manic depression before all of this other stuff started. I guess I just feel so lonely because you are all right...no one else understands.
Hold your head up. Don't worry about your husband. Please continue to take care of you. There is light at the end of the tunnel. Have you tried contacting the drug company?
I'm sorry you are going through a rough time. Sometimes depression is such a huge hurtle with MS. I had those days where I just wanted to end the pain. It wasn't always literal pain either something it was the mental pain and anguish. My first suggestion is get help I have been seeing a great psychologist in my area that has helped me so much. I owe him my life. He can listen and he won't tell you to "get tough" or "call your doctor". I'm not being negative towards your husband but he is going through something too and can't be as objective as someone professional.
The lyrica thing you should look into the company that makes the drug and see if there is any support for people who can't afford to pay it. If not there are so many other medications similar to lyrica that might help with pain. You also should talk to the doctor about ways to control pain without the drugs.
I do keep a healthy lifestyle. I haven't started exercising but I will work into it. I have lost weight recently by eating healthy. I feel better than ever. I take a probiotic, vitamin D, cranberry, and a multivitamin daily. Probiotic was recomended by my urologist Biohm which uses both bacteria and fungus. The cranberry is to help with my neurogenic bladder. I take other medications like amitryptiline for my restless leg syndrome. It helps with the pain too. I take baclofen for my spasms. I'm on zoloft which helps with anxiety and depression.
I am a fighter so I have fought and with that I have found ways to manage my MS. I feel good. I work full time. I am happy. It took a long battle to get there. It took a long time for me to not feel like I was drowning. I get those feelsing but keep fighting and keep going. Good luck.
Thanks so much for your advice. I've been on Cymbalta, Baclofen, and vitamin D for years. I just added vitamin C and started eating better, I've also started slowly exercising, but the limitations in my legs don't allow me to do much. I guess a little is better that nothing. I'm not much of a fighter anymore. I have progressive MS so I don't ever "get better". I have to keep going because I have a full time job which makes me get up in the morning, but the more I go the more pain I'm in. I find that when I hit the wall, a few days of crying will get me through it then the cycle repeats. My doc told me that the Ocrevus I'm on will take about 3 1/2 months to start working, but any progress will be slow because I have PPMS. That puts me in the middle of April. I don't know what to do because I don't have that "drive" anymore. Each day runs into the other...at least for now. I guess I just need something to help me feel better about my future.
When I was first diagnosed I was going to fight. Then a bad doctor made it almost impossible for me to fight. I got to the point where I was forced to quit a job. Thank Goodness my parents took care of me and I was young enough to continue on there insurance. I thought it was PPMS. Everyday seemed to get worse and worse. It was so scary. At the age of 25 I thought I was going to die. I even wanted to die because I didn't think it would ever get better. Then my miracle happened. Don't get me wrong I worked for it but I went to physical and occupational therapy (which you should try). I started on tysabri and now I'm great. I understand that PPMS is different then what I have but never loose hope! There is so much research now a days that maybe they will find something to help make it worth fighting. I heard Ocrevus is wonderful. 3.5 months you can do it you've gone this long another few months to go. I wish you the best of luck. I will also keep you in my thoughts with thoughts of hope, fight and strength.
shiloh, have you considered hemp oil instead of the baclofen? It has no side effects and relieves the spasms. I am doing a little bit more since I have been on it nearly seven months. Relief is what I feel instead of just existing. Before hemp oil i had no idea what was for dinner, anything I could pull out of the freezer(instant store bought tasteless stuff that i would peck at) now i even get to think about what I might make for dinner, hours before and plan how to make it too. And what i make has flavor too. Baclofen was three a day for me, kept me in a stupor while feeling nothing, now I can feel the spasms in my arms releasing. Like the baclofen it is temporary but it is more effective and i can still think.
Thanks Maria...I'm up for trying anything that will make me feel better! I've weaned myself from 6 baclofen down to 2...just enough to stop the spasms in my feet. But...natural is always better than drugs!!!
shiloh, there are two types of hemp oil, full spectrum which is natural and synthetic. You can google it for more info.