How often do you receive IVIG?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 424
   Posted 7/29/2016 9:02 AM (GMT -6)   
For those of you who receive IVIG, how often do you receive your treatment? I currently receive 40mg (80 mg total) of IVIG, 80mg (160 mg total) solumedrol, 25 (50mg total)benedryl and 1000 (2000 mg total)mg Tylenol administered two days in a row every 4 weeks. July was my 5 treatment and I have not seen any relief. As a matter of fact June and July have been extremely rough, I'm sure summer, heat and sun are a contributing factor on that. My rheumatologist stated that I may have to move my treatments up to every 3 weeks. I'm just wondering if anyone else has done this and if they have seen an improvement in doing so?

Thanks for your input.
Hugs,
Melissa

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1646
   Posted 7/30/2016 12:42 PM (GMT -6)   
Hi Melissa. It's Butterflake again. I have been receiving 300mg of IVIG (Gammaguard) every 4 weeks for over 2 years, but you may remember that I receive it for Common Variable Immunodeficiency (CVID). Docs and I have never investigated why I no longer have enough IgG and its' subclasses, but other lupus patients also rarely develop CVID. I am also given solumedrol (can't remember the doseage) and Benedryl 50mg.

The first 6 months I received IVIG I felt awful and was pretty much bedridden. Now I look forward to getting it. The day of my infusion and the following day I don't usually feel well (it's a very large dose and hits me hard), but then any remaining or new infection I've developed during the previous 4 weeks is killed and I feel much better until the IVIG dissipates.

One week before receiving IVIG, I get Benlysta, Tylenol, and Benedryl. Sometimes I think the Benlysta helps lupus symptoms and my joints and other times I think it just makes me feel worse. Generally I don't like it, but I'm seeing a well known rheumatologist (or his PA) and they think it's my best chance to get my lupus under control.

I asked the PA why some rheumys give IVIG to lupus patients and she said it's sometimes given to "try to jumpstart" the immune back to normal. I'm sorry, but I don't really have any advice for you. I have CVID and since I've been getting the IVIG infusions I have not been admitted as a hospital inpatient. Not even during those first awful 6 months. I hope someone else reads your post who can relate to IVIG just for lupus. Love, Butterflake
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 424
   Posted 7/30/2016 9:21 PM (GMT -6)   
Thank you for your response Butterflake, I greatly appreciate it. I'm going to give it one more month, that will be my 6th treatment and pray that will be the magic number when I will see some improvement. Thank you for the verification as well, my doctor I should see a difference around 6 months. I guess I'm just getting anxious. From what I understand of IVIG I can see how it would be of great benefit to you with CVID. I can say that I have had very little illness outside of my lupus since beginning IVIG treatment. I was on Benlysta for over 3 years when my body had an aniphlaxic reaction and I had to stop. The medication worked well for me for over 2 years, then I slowly started having allergic reactions and flares. My doctor is trying the IVIG hoping it would help calm the inflammation in my body while we wait for a new lupus medication to come out. I've pretty well been through the gamet and am running out of options. There is one more he can try that's used for people with leprosy but I am really, really hoping that is a last resort because how he explained it seemed like a very rough medication/treatment. I guess I'll cross that bridge when and if I get there.

300 mg of Gammaguard dose seem like a large dose, I'm so glad it's working for you. Do you split that up over several days or take it in one day? I'm just wondering if upping my dosage would help too? My Rheumy also thought the IVIG would help with my nerve pain from my small fiber issues, but so far it's only gotten worse with time which is discouraging as well. Right now I guess I'm grasping at straws trying to find a temporary bandaid.

Thank you again for your input.
Hugs,
Melissa

Butterflake
Forum Moderator


Date Joined Jun 2006
Total Posts : 1646
   Posted 7/31/2016 5:25 PM (GMT -6)   
Hi Melissa. From the beginning I've received the entire 300mg of IVIG infused one day over 3 hours. How long have you had lupus and what are your current symptoms? Did Benlysta help your lupus symptoms?
SLE '05, Sjogren's, Fibro, Raynaud's, major depressive disorder, CVID (Common Variable Immunodeficiency), Hypertension, Osteoporosis, CNS problems, GERD, angina, 1st stage kidney disease. Many meds: better living through chemistry

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 424
   Posted 8/3/2016 8:19 PM (GMT -6)   
Hi Butterflake,

I was diagnosed in Fall of 1996. Current symptoms are extreme pain, swollen and painful joints, mainly knees, hips and hands. Headaches are back with vengeance, extreme nerve pain and numbness, mainly right side of my body and face. Occipital neuralgia is flaring really bad again. Fatigue, feeling like I wake in the morning and haven't slept, run out of energy really quick. The Benlysta did help my lupus, it took awhile but I did get a good year to year and half benefit from it. Then the allergic reactions slowly started hitting, hives, headaches, nausea. Then of course the massive anaphaxic one hit, which was extremely scary.
Married the love of my life, mother of 2 beautiful adult children, 1 amazing daughter in law, and 1 grandson who is truly a gift from God! lupus SLE 1996, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus NPSLE at 19. I try to live life as though everyday is a blessing, otherwise it would be hard to put one foot in front of the other...hugs

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7475
   Posted 8/3/2016 8:25 PM (GMT -6)   
Melissa,

Do you get good restorative sleep? I know when my fatigue was at it's worst that I slept 18-20 hours a day and was still exhausted. I thought the Dr was insane when he suggested Trazodone as a sleep aid, since I was already sleeping so much! But it really helped me and I woke up feeling more rested than I had in months.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 424
   Posted 8/3/2016 8:46 PM (GMT -6)   
I feel like I've tried every sleep medicine out there. I am currently taking Ambien CR, it's a time release that's suppose to help me stay asleep longer and not wake up throughout the night because if I do I am unable to go back to sleep. The doctors told me the next step of sleep meds for me would be a more of a sedative type, not your average prescription sleep medicine; which I really don't want to go on. I can say that with this latest flare I am sleeping better than I was, I guess because my body is just so worn out, I literally just want to sleep all the time lately.
Married the love of my life, mother of 2 beautiful adult children, 1 amazing daughter in law, and 1 grandson who is truly a gift from God! lupus SLE 1996, sjorgrens, raynauds. My worst nightmare was imagined when my son was diagnosed with RA and lupus NPSLE at 19. I try to live life as though everyday is a blessing, otherwise it would be hard to put one foot in front of the other...hugs
New Topic Post Reply Printable Version
Forum Information
Currently it is Monday, October 23, 2017 6:43 PM (GMT -6)
There are a total of 2,886,328 posts in 316,702 threads.
View Active Threads


Who's Online
This forum has 157796 registered members. Please welcome our newest member, Rjfdgkde.
933 Guest(s), 12 Registered Member(s) are currently online.  Details
Lapis_29, Purrrsiankitty, pasayten, WalkingbyFaith, Dmc695, lovif, gabybee, Loquito, loganuuy6, Tall Allen, NeedUChelp, Jack & Diane


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2017 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer