Ugh 🙁Shingles: So last week I developed... - My MSAA Community

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Ugh 🙁Shingles

erash
erash

So last week I developed severe pain in my right upper back and right arm. Then 1 week later, the shingles rash appeared.

Ironically, it was the day I intended to get my flu and Shingrix shots in preparation to start Ocrevus. Since there has to be a 6 week window b/w immunizations and infusions, and no immunizations with active shingles, it looks like I will forgo the shots this yr.

I volunteer with children, elderly and hospice patients and was worried about exposures once on a DMT that knocks out your immune system. I asked Dr Boster, who is a wealth of knowledge and has become my go to resource for fast, logical info (see his YouTube channel), "will I need to live in a bubble?" once on Ocrevus. He explained Ocrevus depletes mature B cells, not the new ones and T cells are still preserved. So, no need to live in a bubble 😊

So, the shingles rash is fading, the pain is lessening --but not gone (a little gabapentin seems to help at night but I hated adding more meds 🙁). Now my right arm is weak again. Had started regaining strength after the last steroid infusion (which likely suppressed my immune system enough to activate the zoster/shingles).

2 hour pre-Ocrevus MRI last night and I had them pipe in a Led Zeppelin music channel rather than the usual soothing Enya music. Couldn't hear all because of the MRI but felt like I was at a rock concert and helped pass the time.

Sometimes it feels like you can't win with MS. But trying to stay positive 👍

I don't often ramble on this site. It just felt good to vent this AM. Thanks! For listening.

33 Replies
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Jesmcd2
Jesmcd2CommunityAmbassador

Ugh. Way to go on getting the shingles erash 😐 you know your not supposed to do that! 🙁 🤗💕

I hope your feeling better now? At least a little bit? And btw you know that we always have your back to lift you up when MS knocks you down!🌹 So GET UP!😂

🤗💕

J🌠

Fancy1959
Fancy1959CommunityAmbassador

Oh erash, I am so sorry that you have been victimized with a shingles can imagine what you're going through at this point. You are one tough lady with an Iron Will. Think about how you're improving, and how quickly your stopping this nasty shingle virus down and that alone should put the smile back on your face. I wish I were closer so I could do more in person. I'll keep you in my prayers and hope that this virus goes away quickly and completely for you. I'm sending hugs and lots of love I'm sending your way! Fancy.

I’m sorry 😐 you got the shingles but thank you to where you find your info I hope your day goes better

Mmmmmm….my fear is getting shingles. I've gotten the go ahead for Shingrix from PCP and neuro, except my payer won't cover the vax until age 60. Who cares what the FDA said with age requirements, right? Let's see...I could pay out of pocket and forgo paying my monthly insurance premium or forgo the Shingrix vax at this time.

Good to hear you're on the mend and powering onward.

I would like you to know my husband before we met and he was 17 years old he got shingles so I want to say but I know it’s not true that FDA needs to realize you can get any disease, rash at any age.

I am so sorry to hear about everything you’re going through! Prayers sent your way🙏

Sorry 😐 to hear. Hope you get feeling better soon 🙏. I am old enough to get the shot but worry with my luck it would set it off. 🙏🐾 Ken

greaterexp
greaterexpCommunityAmbassador

Oh, no! The pain from shingles can be horrendous. I’m sorry you’ve gotten an attack at all, but the timing is sure rough. Will you be eligible for Ocrevus by the end of the year if the wait time is 6 weeks?

Thank you for the information on immunity with Ocrevus. I’ve thought about trying it, but worried about lowered immunity and illnesses due to that.,

You’re a real trooper. I’m glad you’re starting to feel at least somewhat better.

erash
erash in reply to greaterexp

No immunizations this yr

I don’t want to delay starting the infusions

greaterexp
greaterexpCommunityAmbassador in reply to erash

I didn’t read as carefully as I should have. I’m thrilled you can begin the Ocrevus!

Iona60
Iona60 in reply to erash

Yuck on the shingles. Better now than after starting O.

Iona60
Iona60 in reply to greaterexp

The oncologist that administers ocrevus to me said that, in his experience, those that were prone to respiratory infections before O are the ones that are getting them after O.

greaterexp
greaterexpCommunityAmbassador in reply to Iona60

That’s good information to have. Thank you!

I'm so sorry you that you got shingles erash I hope that you heal up soon and are feeling better. Please keep us updated when you can.

Jessie

Sorry, I am sure that you were ready to get the Ocrevus started.

Oh, erash! It seems like "when it rains it pours" with MS. Hoping the sun will peek out tomorrow!

you are AWESOME ramble, vent, or whatever, you know you can do that here. I will read your rant any day. Be good to you

You are a wealth of information. Since been on this site, you have taught me so much, I am so grateful. I am sorry that you have had shingles and your right arm has suffered. It’s not a pleasant disorder to have. My mum had it in her face near her eye, and I can remember how painful it was for her. Take this opportunity to learn something new, and keep those intelligent brain cells active. Big hug, blessings Jimeka 🤗 💐

Oh man that stinks. But you know you can vent with us anytime. With MS and shingles you deserve a good vent. Get better soon.

Donnie

Many Prayers🙏 for ya Erash sweety, take care of U!😍💛😘💗💙Blessings---Jazmine🌹💜Rose

How did the gabapentin work for you? I was given it for back pain but it didn't help. All it did was make me sleepy and foggy headed the next morning. Just what a person with MS fatigue and MS brain fog needs.

Glad to hear the shingles are going away though. I've never had shingles before but someone told me once that drinking lots of orange and pineapple juice helps to clear it up.

I think the gabapentin helps a little but I’m only taking 1-200mg because of concerns about being a zombie (my experience with lyrica many yrs ago)

MS and shingles! I can’t think of anything worse ☹️. Take good care of yourself and remember we are all sending positive thoughts and prayers and big hugs your way ❣️😀

Wow! I'm overwhelmed with everyone's well wishes. Thank you so much for your kind words 🌈❤️

Thank you for sharing (anytime!!). I’m sorry you got shingles; I’ve had it twice so I understand that pain. Best wishes moving forward and starting O. Please share as much as you want! I’m trying to get started on O and would love to hear your experience.

I had shingles a few years ago but fortunately it was a mild case and we caught it immediately. If you plan to take the shingles shots sometime in the future, make sure it doesn't have a live virus. My internist was informed enough to tell me to check with my MS doc before I took the shot. I can't have it because it is a live virus and I am on Ocrevus.. They might have come out with a new inoculation that doesn't have the live virus.

erash
erash in reply to sushimylove

They do have a killed virus shingles shot now called shingrix but if you’re on ocrevus you have to consider timing of any vaccine

ssdw1958
ssdw1958 in reply to sushimylove

I want to thank you for that information I am also on Ocrevus and I know I am not supposed to have any live shots and I was unaware that the shingles shot was a live shot. Again I want to thank you.

erash
erash in reply to ssdw1958

See above

There is a non-live vaccine for shingles now available shingrix

I'm so sorry you're in pain. I hope you feel better soon.

Leslie

Shingles are surely the pits😩. I had them many years ago, induced by extreme stress at work. I can’t imagine dealing with shingles and MS. I’m so glad that you will start your infusions. Hopefully the shingles will be a bad memory very soon. Best of luck 🍀🍀

That's rough!

Oh, I'm so sorry! I had shingles several years ago and the pain is indescribable! I had it on the side of my boob so you can't exactly hold yourself there when it really starts "pinging" with pain! I remember going to work and holding my arm tight against my boob while I typed.

I couldn't wait to get a shingles vaccine when I found out it existed. NEVER want to go through that again!

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