Last infusion 6/30 called pcp in July/Aug/Sep/Oct reporting I had upper respiratory issues each time over the phone each time a round of antibiotics one round of prednisone. After Oct and still feeling awful coughing up all sorts of blood not sleeping I asked her for X-ray. I had an abscess size of baseball spent week in hospital getting iv antibiotics now on Augmentin oral for a month. Saw MS dr said no more O. Next O was supposed to be Nov 30 I was on 5 month intervals. She talked about a chemo drug that I take orally for 5 days wait a month take 5 more then none for a year the I forget the name. Worse is I am getting MRI in December see MS dr mid Jan to see if this sis the way to go. I will be on nothing I am freaking out. How to i navigate crap gap that got me to 5 months intervals? Please MS Warriors help your sister keep strong. Right now I feel good as far as MS. Thank you and ✌️
No More O: Last infusion 6/30 called pcp... - My MSAA Community
No More O
Wow NanaCC, you have really been through a lot… Especially with a huge abscess in your lungs. It’s a shame they did an x-ray before that point in time when you kept having trouble. I’m glad you are feeling better from all that at least..I believe I get in just a small way how you feel and due to insurance snags or shipping delays I’m late on my ms meds.. maybe in the grand scheme of things it won’t be so terrible as your body will truly be able to get over that terrible infection without it being compromised by your MS Meds.. I know you getting your MRIs and seeing your neurologist, cannot come soon enough in your head. Usually in life, I find that there is a reason for everything… Including delays on what I think should happen.. Sometimes you just have to have faith that this is the right thing for now. 🙏🏼
Wow, so sorry to hear all that you've been through. I get that going off of a DMT is scary, but it doesn't sound like you have much of an immune system right now since you haven't been able to fight off this horrible infection. December really is just around the corner. Hang in there!
So sorry to hear about your nasty infections/abcess. Praying you fully recover soon. I wouldn't want to take anything before being fully recovered.What crap gap symptoms do you experience? I would try to find ways to deal with each. If there are mobility issues seeing PT can help.
Sounds like maybe it is Mavenclad that they are changing you to? You have to watch out for infections with that too.
Sorry to hear about your side effects. But join the club of the many people here hurt by O (myself included).
So very sorry that you are going through this NanaCC . Maybe not being on meds until your infection is cleared up is best. I'm surprised your dr didn't order and xray before you asked for one. Hope you feel better soon. Keep us updated on how you are doing.
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I would have to tame my freak out with a plan of action, and make the most of the time I have left while feeling good. If crap gap is going to steal from your holidays, maybe you can do a few things now while you're still feeling good. PT is a great idea, if you could use a mobility boost. Schedule something that will make you happy into your crap days. An anti-crap plan! You've been down this road before, and it will be your last trip, because your next med will not have a crap gap. (It's only an Ocrevus thing, right? 🤷♀️)
Sounds like Mavenclad. I'm a fan 🥰
Please keep us updated on your health, NanaCC . In the meantime, you are in my thoughts and prayers. 🙏
Good luck
Praying
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praying for you to get thru this quickly.
NanaCC I am praying for you & sending HUGS!Mary
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