Hello! I've been taking Tysabri for a year with little side effects. After the last treatment, I've felt fairly despondent, brain-fogged, and unable to care about much. I love the holidays, but I don't feel like getting ready for them this year. Is this normal?? Or MS normal?
Depression after Tysabri?: Hello! I've... - My MSAA Community
Depression after Tysabri?
I've had 10 doses of Tysabri and have done quite well on it. I've had a lot of brain fog this month (frustrating/embarrassing) and have been more fatigued than normal. I'm wondering If I'm having a small relapse. I'm really struggling with short term memory and problem solving. I've been confusing left and right. I'm really afraid that I'm going to forget something important. I don't feel depressed. I just feel kinda scattered and scared. Jbix, it seems like we're both experiencing a change that is negative at the moment. Medicine, relapse, time of the year??? Thoughts anyone?
Hi, Juleigh21 . I, too, have been suffering from major cogfog for the last few months. I confuse my directions, I forget my dogs' names, I get lost in familiar places, and when we just visited our kids and grandkids in Orlando for Thanksgiving I kept forgetting what city we were in. It is very scary, but I have found that now that I am back home it is getting a little better day-by-day. I also seem to get a lot more depressed around the holidays as well. I think the cogfog is a function of both the MS and age.
So far, i've not had any medications and won't until after my next doctor appointment. However, I can tell you the thought of getting out all the Christmas decorations and setting up a tree has me exhausted, just the thought of it. Not depressed, just MS fatigue. Sorry that you are going through this, and hope things are looking up for you very soon .
Hi jbix , like CalfeeChick , I don't take any meds other than for symptom management. So I can't address the Tsabri connection. However, I've experienced the lack of motivation. Most often it is due to MS fatigue. But I've also experienced mild depression. One kind of mimics the other.
I can't tell you what the cause of your recent 'apathy' is, but keep an eye on it. Mention it to your doctor if you see him soon. If it continues or gets worse, make an appt to see him.
I hope the sights, sounds and smells of Christmas perk you up and you feel more like yourself. Even so, that doesn't mean you must decorate as you have in the past. Maybe it's time to simplify? π
Hi, Tutu. I agree, it is hard to confuse cogfog with fatigue and/or depression, since depression causes fatigue as well, and also, short attention span, disinterest in doing things you once loved to do, poor concentration, and just a general sadness. MS fatigue causes a lot of these same symptoms. There are psychological tests that can diagnose depression. My neuro had me see a neuropsychologist to see what was going on cognitively versus the physical. Jbix, that might be a good idea for you as well. Speak to your dr right away. No sense feeling bad with depression as well as MS when it can be treated.
I'm so sorry you're going through this. I have no insights to share about the medicine, but can relate about the fatigue/lack of motivation, even on days when my symptoms weren't really bothersome. Your use of the word despondent concerns me. I've had only a couple of days so far of feeling quite blue, and I thank God for so few of them. But I think if I felt that depth of what you are describing, I would think it's time to ask your neurologist about it. I would hate to see you suffer when you could have some help with it. I'm not sure if holidays tend to be rougher in general for those of us with MS, but I hope and pray you begin feeling much better whether with treatment or not.
Keep us posted on how you're doing.
I had 72 doses of Tysabri before I had to go off it for medical reasons. I had a number of times when I felt blue after an infusion and it always left me fatigued. But if you continue to feel down, you really need to discuss it with your doctor. They are there to help you with things like this. Meanwhile keep sharing here, everyone is great. Will keep you in my prayers. Kelly
Hi @jbix I don't take tysabri, so l really don't know alot about it. According to there website, depression is listed though.
Definitely call your neuro about this tho. The holidays are hard enough and stressful enough and we all know that, that's not good for us. Let us know how it goes
And know we are always here also for you!
Thank, everyone. This site has been extremely helpful with venting and finding out that people are experiencing some of the same whacky symptoms that I have. My latest MRI showed no progression in the brain, but my cognitive function seems quite decreased. I'm not suicidal at all, so that's not a worry, but little setbacks in my day throw me into a tailspin. I don't feel like Christmas shopping, which is weird for me. Schedule issues with the holidays make me not want to go see anyone.
jbix , my neuro told me that lesions have no bearing on MS disease and function. A person with only one brain lesion in a critical area of the brain can have far more problems than a person with numerous brain lesions in less critical areas. And the MRI shows where the lesions are, but are unable to show how that affects function. Sorry, I may not be explaining this well, but I'm having difficulty finding the right words.
Also--MS itself can cause a change in your emotions. That's different than feeling sad or blue because you have MS. π
Take your down side and take it out on amazon smile Easiest way to get shopping done in my book @jbix
Hi jbix! I have had MS for about 13 or more years and know exactly how you feel. I'm surprised your neurologist started you with Tysabri instead of Copaxone which is much milder. I was on Copaxone for a few years, which helped me a lot. Then we moved to NC where the summers are more hot and humid which in turn brought on relapses. I was then put on Tysabri and stayed on it for the next 4 years and had rapid weight loss. I have chronic fatigue syndrome that runs with MS and after the monthly infusions, I would go home lay down and not get up until the next day. As far as the depression goes, that too runs with MS. MS gives you a lot of stuff like, CFS, depression, incontinence, pain, migraines, insomnia, sleepiness, and so on. The symptoms have to be treated so you can feel better. You need to tell your doctor everything, write it down so you don't forget. This way, they can investigate the cause.
take care, Donna
Welcome to our wonderful chat Sulton and sophiekerr1977 l love how just a bit of info might trigger a thought in someone else.
Depression is nothing to mess with. I have been dealing with it most of my adult life. Hmm actually since my 1st back surgery. Go figure.
SophiaClaire70 l would definitely call your Neuro or your PCP about it. The holidays are hard enough to deal with for us as far as stress goes. Please let us know how it goes
Welcome again both of you!
I just had my 113th Tysabri infusion and it has helped me immeasurably. I have never noticed depression specifically, but after reading these comments I have to wonder just when I started feeling so unmotivated to do anything--from cleaning my house, cooking meals for my family and doing self-care. Christmas is particularly bad for me; it is an effort to do the tree, shopping and decorating. So now I think I'll be talking to my neurologist.
Hi, Jbix. While I have never taken Tysabri, I have suffered from depression for most of my life; lately it's been controlled by Cymbalta (duloxetine) which also helps with the nerve pain from the MS. It may well be that Tysabri can cause depression (I don't know, you should discuss with your doc) but I do know that MS itself can cause depression. I know that mine grew worse after I was diagnosed and the dr upped the dosage of the Cymbalta which seemed to work. I am currently on Tecfidera, but prior to that I was on Gilenya and then Copaxone. I don't believe that any of them had any effect on my depression. The dr treats that separately.