Apparently you need a certain amount of karma to request it from reddit and it would be very useful to have a separate group. It needs to be requested at r/redditrequest
How quickly do you notice the effects of IVIG? It’s been four days since my first IVIG treatment, and I don’t notice any difference—in fact, I feel slightly worse. I have low IGG, IGG2, IGA.. Also no respons for pneumococcal vaccine. I suffer from mucus, a stuffy nose, and gut problems every day. Allicin works well for my gut, but it is an herb, I don't know if it is safe to use alongside our treatment. When can I expect to see the effects of IVIG? Is it normal not to feel anything after four days? I’m getting my next IVIG in four weeks. i get privigen
I’m asking because I’ve been on 35g a day 2 days a month for about 3-4 months now and i really haven’t noticed any improvement . My condition effects my legs/ankles they are really weak and i need a walker to get around because of the weakness and i lose my balance easily . Just not sure how long it should take to see if this infusion is going to work for me or not .. any help is greatly appreciated with your experiences . Thank you
I’ve been in the hospital since Sunday 8/9 with rhabdomyolysis, that they feel may be polymyositis but we have to wait for the blood work to come back to see what exactly it is. My MRI of my legs showed edema and fluid, so they decided to start me on IVIG.
Fun fact, my mom is a full time IVIG infusion nurse in her day to day life. Hospitals or I should say, pharmacy’s in the hospitals are not the most educated on dosing and loading dosages.
I had my first one on Saturday and they increased it incredibly too fast, my mom told them before they even did it (she knows far more about it so I trust her judgement) they increased it by 46ml every 30 minutes topping out at 360-ish but it was finished before it reached that time frame.
My mom’s highest rate for a patient currently is up to 182 I believe but commonly 120, sometimes less. On Sunday they did slow it down and topped out at 186 before it was finished, didn’t have a headache during but last night my head started hurting and it progressively got worse. I have severe neck pains, stiffness, pain in the back of my head, head is pulsating painfully all over, it hurts to move my eyes or my head. Can’t put my head down or back. It’s been excruciating.
They’ve given me
Tylenol, ibuprofen (all low doses that I would normally have double of at home), hydrocodone once but it didn’t work, Benadryl multiple times, magnesium multiple times, zofran, toradol, nurtec, decadron, fluids and I’ve been on constant fluids since I’ve been here due to Rhabdo, they brought it down to 75ml per hour and increased again to 100ml per hour today.
What else should I mention to them or try? I’ve been icing my neck which has helped. I feel like I was running a fever earlier, but when they checked my temp it was after I felt like it broke and temp was 99.1. I am desperate to feel better and leave this hospital.
I have CIDP and was diagnosed about 5 years too late. My neurologist suggested IVIG and it’s been a wild ride. First, I was supposed to start in December…. But didn’t til late June. (Insurance). Finally got it covered only to find out it’s 7,000$ co pay…… and I’m supposed to do it every 3 weeks. Prayed on that and God helped me there, I got a grant for a year that pays for my infusions. Got set up to have infusions at home because I live in a weird area, so that even worked out. First IVIG loading dose was 5 days. I went into encephalitis meningitis or however you say it. It was awful and really scary but luckily it was the last day so a week in bed recovering then I was feeling like myself again. 2md IVIG comes up. Again, I feel like I’m forced into a flare and feel like I’m completely drained of all energy, care, joints hurt and can’t get out of the house for a good week. 3rd injection comes this last July….., sure enough after I feel like xrap and not like myself; but I remembered this is how I felt last time. Well this last time was a good 9 days before I got some energy back; and I tried to go to the gym and I couldn’t even squat the bar. I cried in the car because I’ve been training for 2.5 years and although battling CIDP, I’ve always said how exercise has been my lifesaver while I was figuring out my sickness; and mobility is life’s medicine. I’m just stressed. I still feel very weak and I’m going into my 4th infusion a week from today. I want to give this a real chance before I quit; but I don’t know how many more infusions I can feel like this. Add a husband and kids that need your attention; and that I’m a school bus driver and let me tell you…. The guilt is there. I’m not energetic, I’m kinda bummed out and just not feeling myself. Is this normal? Does it get worse before it gets better? Should I quit and ask for something else? Maybe a different medicine or SGIC? Sorry this was long I needed to vent. I’m not feeling good. I want to be able to manage my CIDP, but what is the risk if I don’t do IVIG treatments? That I could possibly have another attack, and lose more nerve function? I don’t know what to do.
Hey everyone,
I’m posting on behalf of a friend in his 70s living in Maryland. He previously used Hizentra (Subcutaneous IG / SQIG) from 2019 to 2023, but was also getting IVIG as needed.
He’s currently thinking about switching back to Hizentra, but he has a few major concerns and questions before making the leap
I’m pretty sure he’s covered by Medicare like Medicare Part B? Does anyone know how hard it is to get approval for both regular Hizentra and periodic IVIG "booster" treatments if his levels drop or symptoms flare up?
Can anyone recommend a solid home infusion provider that operates in Maryland
How cumbersome is the process of switching back from IVIG to SQIG nowadays? For those who have done it, how long did the prior authorization / benefit verification process take?
Has anyone here personally done Hizentra for maintenance while keeping IVIG on standby as needed? How does insurance usually react to having orders active for both?
Any insights, experiences, or recommendations would be hugely appreciated! Thanks in advance for helping out.
Hi everyone! I’m a product design student working on a research project around IV cannula management and wrist support during IV therapy.
I’m trying to understand the real problems healthcare professionals and patients face, especially around wrist/hand movement, IV dislodgement, swelling, discomfort, and existing IV boards or arm supports.
I’d really appreciate hearing from doctors about your experience:
1. What wrist, hand, or arm movements do you see most often causing problems with an IV cannula or tubing? Are there particular movements you try to prevent?
2. What are the most common difficulties or complications you see patients experience when they move their hand or wrist during an IV infusion?
3. Are there particular types of patients who are more difficult to manage with IVs, such as children, elderly patients, restless patients, or patients with limited mobility? What makes IV management difficult for them?
4. What do you think are the biggest problems with current solutions such as IV boards, armboards, tape, or other methods used to keep an IV secure?
5. From a clinical perspective, what would you want an ideal wrist support to do, and what would you absolutely not want it to restrict?
6. “What aftercare do you usually provide for patients after an IV is removed, or when they develop swelling, bruising, irritation, or other problems at the IV site?
I’m especially interested in real clinical experiences and examples, even small observations that might seem obvious to you but are often missed in product design.
Thank you for sharing your experience. It would be extremely helpful for my research.
Anyone been on scig for a while? What has your experience been. My family member is considering switching bc for some ridiculous reason ivig is setting off seizures. Once during the treatment another a few days later. We plan to ask the doctor about moving to scig to counteract the big stress the infusion puts on the brain. The Current frequency of ivig is once every 4 months.
Yesterday I got my first ivig treatment... Today I really feel like I have the flu—I have a headache... When will I start to notice a real difference? I'm getting a new treatment on September 11.
Anyone else doing like 140g or so per month- it’s weight based but you get my point.
i have CVID and Autoimmune Encephalitis and i can’t find other AE patients and the CVID people just do replacement amounts.
Anyone here? The only high dose person i know is SFN, i’m looking more for people that have immediately threatening stuff. I got one friend with GBS i relate to him decently, and another with myasthenia gravis, i can sort of relate to them but they’re a distant friend.
I deleted this post from a few days ago because I thought I posted it in the wrong place. (I'm new to reddit.) But it doesn't look like there's a SCIG sub reddit, so I just put SCIG in the title of the post.
I was recently diagnosed with double-seronegative generalized myasthenia gravis. I have significant ptosis and muscle weakness that my neurologist appreciates on exam. I’ve been trying to work my way out of this disease without jumping into treatment, but my neurologist is strongly urging me to proceed with IVIG.
She initially felt that neither RNS nor SFEMG was necessary to support her clinical diagnosis, but I pushed to have the testing done. My RNS was negative, which has left me even more confused. She actually seemed surprised by the negative result. She is still comfortable with the clinical diagnosis and wants to proceed with IVIG, but is holding off on Rituximab until I have an SFEMG.
So…tomorrow is IVIG day.😭
I struggle with anxiety in general, and I’ve read quite a few stories about adverse effects from IVIG. I know everyone responds differently, so I’m hoping to hear some positive experiences and practical tips that might help me get through my first treatment without scaring myself to death beforehand.
I already asked them to run it as slowly as possible. Unfortunately, I wasn’t told that IVIG could potentially be spread over more than two days, and by the time I learned that, they didn’t have another appointment available for a month. So I’m stuck with 2 consecutive days, and because it’s being done on a weekend, the infusion center’s hours also limit how long they can run it.
My dose/rate
I’m 5'½" and 100 lbs.
I’ll be receiving a total of 90 g over 2 days — 45 g each day of Gammagard Liquid 10%.
Here are the infusion orders for each 45 g dose:
“Your original infusion rate based on your height/weight (155 cm/45.4 kg) would have been Total Estimated Time: 192 minutes (3.2 hours).
Your current infusion rate has been extended to Total Estimated Time: 324 minutes (5.4 hours). This is a safe rate, it is very slow.
Begin infusion at 23.6 mL/hour for 11.8 mL (VTBI) over 30 minutes.
Then increase to 47.2 mL/hour for 23.6 mL (VTBI) over 30 minutes.
Then increase to 94.4 mL/hour until bag empty (414.6 mL VTBI).”
My premedications will be:
My partner is going to sit with me because I’m very sensitive to Benadryl and will probably be pretty sleepy/slow. She’s also going to help make sure they don’t accidentally speed up the infusion. 😅
I’ve been drinking a LOT of fluids and have been adding one Liquid I.V. per day. I packed a blanket, pillow, salty snacks and my phone charger, and I bought one of those migraine caps in case I develop a headache.
A few things I’m particularly nervous about:
I’ll be receiving the IVIG at a Kaiser Northern California hospital, if that makes any difference.
For those of you with MG who have had IVIG:
I know I can’t predict how my body will respond, but I think hearing some “I had IVIG and it was totally fine”stories would really help calm me down tonight.
Thanks in advance to anyone willing to share their experience. I’m trying very hard not to go into this expecting the worst.
I haven't started my SCIG treatments yet, but I was wondering long long it took for you to notice an improvement in your symptoms? I'm asking because I'm considering applying for a full-time job in about 6 months. Working full time is not something that I could do right now, but I'm hoping the IG treatments will help enable that...
I know everyone says “hydrate hydrate hydrate“, but has anyone ever tracked the actual amount of ounces they are drinking? I felt like I was very well hydrated before my very first IVIG treatment a couple of weeks ago, but I have never been in so much pain in my life. The headaches and bodyaches were so bad I almost had to go to the hospital. So my question is, how many ounces of water per day leading up to infusions do you feel like is well hydrated?
To start: I have messaged my infusion clinic/doctors office and have also left a voicemail however they unfortunately use an AI bot to answer the phones and you can only leave a message now 🫠
I had a bit of neck strain and headache last weekend. I got a massage and it helped for two days. During my infusion Wednesday I became very dizzy and the nurse said she thought it was because I took Benadryl which didn’t make sense to me. I had to have a family member come drive me home.
Since then I’ve had increasing neck pain and stiffness, pain at the base of my skull, and a headache that feels like my head is having contractions, eye pain, and spinal pain. When I bend over or stand up It feels like blood or fluid is rushing up my neck and pooling into my head and it’s very painful.
I can still touch my chin to my chest, and the headache got a just smidge better after taking 800mg of ibuprofen, sumatriptan, and my muscle relaxer. So I am wondering if this is just normal or if there is something else wrong.
Hi, I’m new to IVIG infusions and I heard that it’s a good idea to keep a journal. I’ll have my second infusion in about 2 weeks and I was hoping to start documenting my infusions, side effects etc.
Any journals you love? Why do you like them? Your recommendations will be very helpful
Thank you!