Being immunosuppressed in a COVID world definitely presents complications the average bear doesn’t have to navigate. MS is particularly tricky, because the reason I have the condition is my autoimmune system is on overdrive. In theory that means I should be more protected than most. After all, in order to treat the disease, the goal is to put the immune system to sleep so the body stops cannibalizing itself.
Once I started taking the intravenous meds over ten years ago, I assumed a suppressed immune system would mean I would catch everything known to mankind. I would have bet everything I owned that I’d be sick with a cold , flu, or some godawful thing from Thanksgiving until Spring, but that never occurred. In fact, I can count the number of times I have been ill during this span on one hand, which I still think is odd, and I have no idea what this all means.
The reason this is becoming an issue is because while last month’s plasma transfer provided immediate relief from the weakness and the falling, the relief only lasted ten to fourteen days. Since then, I have been struggling with my balance and ability to move around. I literally have no strength in my ankle, my leg feels like it has no bone in it from just above the knee down, and the weakness gets worse with each passing week.
So while the plasma transfer helped, it appears my condition has regressed. The only thing I have done differently in terms of treatment (other than going two months without doing anything instead of the normal one) is that I suspended receiving the Ocrevus infusion that was due in March. It has been over nine months since my last infusion, and the gap between treatments is supposed to be six.
So my dilemma is to whether to bite the bullet and get the damn thing. This is not the first time I have stopped taking something to my ultimate detriment, and while I cannot clinically prove the infusion has been helpful, my not getting it certainly fits a historical pattern. But I know from lab test results that this drug shuts down cells that fight infections, and that doesn’t sound like a smart thing to do.
What is most irritating about being in a high at-risk group is that you have to think about and analyze everything. This is cumbersome because nobody knows if the decision they are about to make is going to be the correct one. I go through a line of thought that asks if the decision I am about to make is balanced and thought out or impulsive. Is it selfish? It is overly conservative? Is it rational or based on fear? Is it what is best for me? Is it what is best for my family? The process can be draining.
For instance, do I avoid any kind of crowd, even if I wear a mask, if I get the infusion? Do I stay home and not visit anybody or have anybody visit me? Do I live like the boy in the bubble? Or do I throw caution to the wind and say fuck it! I was taking a lot more immunosuppressing meds than I am now and rarely got sick. Why should this be any different?
Well, the difference is the potential consequence, which could be tragic for myself and those around me. That is the rub. One bad decision and the dirt nap can become a real possibility.
While I don’t have any plans for the summer, I like to have options. A group of good friends from out of state have talked about getting together this summer, and while I’d really like to do that I’m not sure how smart that would be if I go ahead with this. I’d also like to go back to a restaurant at some point in time, and be able to visit with local friends. Part of me says why worry if the necessary precautions are taking. Then again, there is that nagging little voice that whispers, “what if?”
My gut tells me to get the infusion sooner than later. I would like some assurances, but I know there are no guarantees. I suspect that I will be reduced to a prisoner in my own house for a minimum of three months if I get the stuff, and I really don’t want that.
But what good is having options if you can’t walk more than ten feet without holding onto or grabbing something? What good is freedom if it means a complete loss of mobility and a quicker date with the wheelchair. Is the risk worth the reward? I’m thinking not, but we are heading into the best time of the year, which would make my confinement seem exponentially longer.
Do I risk being completely disabled or risk being completely dead? I obviously don’t like either choice, so the middle ground is to get the drugs then hide from the world. That is the sober reality of the situation.
I’m waiting to hear to see what my neurologist has to say about my quandary. Meanwhile, I’m trying to figure out how I’d cope with the restrictions I know the infusion would place upon me. One option that crossed my mind is to increase my MMJ intake and live in a comfortably numb state, except when I am working or sleeping, until a vaccine is developed and my sentence is over.
Now there is a thought!
MSich Chronicles 
I’m sorry you’re struggling with mobility these days Steve. I really can’t relate.
As to the immunosuppressed thing, I sure do get that. I overthink everything!
I hope for your sake you figure out what is best for you.
Here’s to the end of this Covid bullshit!
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Cheers 🍺🍷🍸. I will figure it out. I am waiting to hear back from my neurologist, but I am leaning towards getting it in a few weeks.
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Well I did my Rituxan infusion back in March. I do stay mostly at home but I took my infusion at the start of the pandemic. When I go out, mask and gloves. I do the best I can. I thankfully have been fine.
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I am sure I will be too, but I was itching to bust loose and am resigned to not having that happen as soon as I’d like. I have to do something to try and stop the regression from getting any worse
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It is definitely a discussion for your neurologist. For me back in March skipping an infusion was not smart choice. I’m sure you’ll figure things out. Good luck.
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I struggle with a lot of regret over having done my treatment. It’s such a coin toss. I think back and wonder maybe it would have been better to have dealt with the MS symptoms and not everything that came with the treatment. And you’re right the advice of doctors after the fact is pretty all over the place so once again you’re left on your own to decipher what the ‘right’ thing to do is. And that can change from minute to minute. Xoxo
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I am so sorry you are having a difficult time right now. MS and everything that comes along with it isn’t easy and then this virus on top of that makes things even more challenging. I know you are a very strong person and things will get better in time. Just remember to rest, take care of yourself, and limit stress as much as you possibly can!
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Getting a plasma transfer tomorrow. Maybe they can give me something that will keep me asleep until Election Day. 😁
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Best of luck with the plasma transfer procedure. I hope everything goes well and you are able to relax all weekend!!! If you find a doctor that will give something to sleep until the election, please let me know! Our government acts worse that children in a playground. I am so sick of the orange buffoons lies and ugly face!
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I can’t even listen to his voice or see him on the television a nanosecond
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I am a little late, but I am with you on this!!!
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Honest to God Alyssa, if he somehow gets re-elected I will literally want to move out of this country.
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We are honestly planning to move to Canada if he gets reelected. I can’t imagine he will because of everything he has done and didn’t do, but his cult followers love him for some unknown reason!
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Love is blind
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Sorry to hear you’re struggling Steve.
Btw, most of us overthink things, so there. I started seeing friends but tell them I don’t feel comfortable inside, so we go out and have a drink or go for a walk. Yesterday I went to a restaurant with the boys for the first time since March and it felt fucking amazing. Mind you, it was after I made sure they stick to all the rules prescribed my the Ministry of Health. The next table was not close, all the waiters wore masks even outside, we were outside too and when we used the bathroom we wore masks too. So IT’S OK to be scared, but, if you respect the rules, you’ll be OK.
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What a terrible internal conflict. I hope your neurologist can provide some insight and direction. I have a cousin with MS, and I know she has a lot of the same concerns about Covid. It’s definitely not easy. Take good care:-)
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I have a feeling he will have an opinion burnout is still ultimately my call. We’ll see how it goes. Thanks for the comment
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I am so sorry that you have to deal with any of this, that you are forced to face this struggle. I wish I had some wisdom, comfort, something….For what it’s worth, you are a total rockstar in my eyes and I feel certain that whatever you decide to do will be the best thing.
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Thanks Sue. For my own peace of mind I think I will gets the meds and hope it was the right call, unless my doc feels strongly otherwise
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It’s none of my business, but I am glad this is the decision you have come to. I think it is what I would have decided as well. You are in my thoughts, my friend.
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Good to hear in the comments you’re going to do it. This is the time, more than any other time, to treat ourselves with the best care available. I’ve been struggling with a similar – but not nearly as worthy – proposition for some time. Church. Church is back in session (my church) for the first time today in a long time, but is it really worth the risk? Should I go back to the bar with devil-may-care or be an example of prudence for the mother-in-law (who REALLY wants to go to the Indian casino ASAP). Luckily, I didn’t have to make the decision.
My wife made it.
Last night Mrs C, who suffers from asthma, says to me: “I’m still really worried about exposure in places we don’t need to be. Do you need to go to a bar yet?”
No, I don’t. I don’t ever really need to go to a bar. My parishioners were insisting. But, when it comes to Mrs C, I’d rather err on the side of caution than throw caution to the veritable wind. So, I’ll pass. My faith is strong; even if I must continue to practice my own faith at home. 😉
How’d the transfer go?
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Smart man. It isn’t worth the risk. I am really curious to know how many people will get sick if the convention in Jacksonville goes off as planned.
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Steve, I’m so late in my response… did you make a decision? Well, that’s not even the point I guess. I know you have to make hard decisions all the time. The COVID brings the severity of those decision right up to the light! Will this decision literally kill me? I hope you got some answers… when you decide what is best, it WILL be the best decision. That’s all any of us can hope for. (Still sucks, tho!)
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Talking with my neurologist in 5 minutes, and unless he had any significant concerns I am going to proceed with it next month
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Drop me an email any time. Gosh. I hope you got some solid answers… I have only had Skype visits with my doc. Although nice to not have to go to the clinic, my Fibro is beating me to a pulp! God, I hope you get some answers, keep fighting my friend.
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