How do you know when to quit IVIG?
AnonymousDecember 5, 2008 at 3:29 pm
I currently receive IVIG treatments every 6 weeks to treat CIDP. I am able to go from infusion to infusion with no problems. Recently at each infusion my veins have become so irritated we have to stop the infusion and start at a slower rate. I’ve been receiving treatments for almost 2 years and frankly I’m just really tired of the whole thing. I read some of your success stories about how you are treatment free and symptom free for years and I wonder when did you know. I tried to stop about 6 months ago and on my 7th week I didn’t have enough strength to walk up my stairs. I just left an infusion that was horrible and I’m feeling a little discouraged about the whole thing and wondering if my body is simply saying enough already. So for those of you who have been able to stop or know someone who has please share your story with me. I just left a really bad infusion and need a little pick me up.
AnonymousDecember 5, 2008 at 4:54 pm
Gosh you sound just like me! Everything has been going fine with the IVIg for a year but all of a sudden I am having side effects. We have slowed the rate down dramatically and that helps a great deal but still, what’s up with the sudden change?
As for getting off of IVIg, I’ve never even considered it – I’m just not going to go there mentally yet because I don’t think I’m stable enough to go off of it and if I try I’m just going to get disappointed and depressed. It’s possible that you will need some kind of treatment your whole life but not a given – you MAY not.
Now for the vein irritation – I’ve had that too and here are the things we’ve done to help with that:
1) use a smaller needle – sometimes they use a pediatric needle
2) put a heating pad over my arm before the infusion to open the veins up and warm them; then if my veins get irritated during the infusion I’ll put the heating pad just above the needle site (don’t put it ON the site)
3) slow the rate down
4) slow the rate down even more
5) my nurse also straps my arm down with those bungee-like bandages so I can’t move it around too much. I tend to forget it’s in there and wiggle my arm around a lot.
6) my nurses uses the veins in my elbow rather than on my lower forearm, he says they are a little bigger there and it flows in easier – however, refer back to # 5, I have to wrap my arm up so I don’t pull on the needle
7) take an anti-inflammatory drug – advil or the like
8) try to relax, tension causes spasms which tighten up your blood vessels, constrict your blood flow and make irritants move too slowly through your veins
9) drink more to dilute the solution and/or add additional IV fluids so the solution is not as concentrated when it hits your veins.
Hang in there, I can’t even tell you how many times I’ve wanted to refuse treatment. This past Tuesday I cried for ten minutes before my nurse got here because the day before had been so bad, but Tuesday was better – and now I feel pretty decent. It stinks when your treatment makes you sick but the alternative is pretty crummy too – I sure like being able to navigate the steps on my own without the chairlift. 🙂
AnonymousDecember 6, 2008 at 4:58 pm
I am in the midst of stopping IVIG right now. I had my last IVIG on Sept 18th. I had been receiving it every 3 weeks for 18 months. I asked if my doctor thought I could go longer between treatments as I wasn’t getting the “boost” anymore like I did when I first started. I felt like I was at an even keel and I didn’t notice when any change when I got it. My story is not your norm though as I received chemo in the fall of 2007 and I think that put my CIDP in remission but it took me the extra time to repair and recover from the damage that had been done. I am not saying I am healthy now by any means but just improved and so far so good. I have made a deal with him if all is still well in January I get rid of the last of the prednisone I am on too. He didn’t want to change too many things at the same time. That way if I relapsed again we would know it was the IVIG that was helping. If both had been stopped then which one was it? Also I had been tapering my dose down by 25% since March. So we just didn’t stop cold turkey.
I can’t give you any helpful advice on the IV’s as I use a port for mine. I had such little veins that they weren’t good for infusion anymore. The port has been a godsend. I plan to keep it even after I finish with chemo. I will just have to have it flushed once a month.
From what you said of your attempt to stop it 6 months ago, I’m not sure I’d be anxious to try it again. Good Luck on your endeavor,
AnonymousDecember 7, 2008 at 1:14 am
I’ve had IVIG 6 times a month going on 4 years. I finally got a chest port 15 months into treatment as my veins were giving out. I fought getting a port but it’s really so easy to use. I don’t get the old energy boost either but with out IVIG I’d go down hill. It’d be wheelchair time in 6-8 weeks for me in such nerve pain no medicine could stop it.
Please consider all avenues before deciding what to do. Some take a “Infusion Holiday” and others try steroids. Talk to your specialists, family, friends, support network and FORUM folks.Consider talking to a therapist about dealing with a chronic illness.I too am so sick of the infusions but many of us have no other options. Having IVIG gave me a second chance.I have bad days where I am so frustrated and then realize infusions are part of my life whether I like it or not.
AnonymousDecember 7, 2008 at 2:34 am
Thanks everyone for your response. I wrote my initial post with tears streaming down my face at my frustration over the infusions and it is so comforting to know that there are people out there who can relate and are willing to share their experiences/advice. I am only 30 years old and emotionally this has been just extremely hard to deal with while still being a wife and mother of 3 young children. I started experiencing the issues with my veins when I received a new nurse. I am going to a different infusion nurse on my next infusion but will also speak with my doctor about the port. Again thank you to all of you for your replies. May God bless you all.
December 7, 2008 at 10:28 am
What do you mean you risk cancer? Ivig has no risk of cancer, unless you supplement w/steroids or other imunosuppressnt drugs. About the anaphylactic reaction, that is different from the migranes, if you were going to have an anaphylactic reaction, I am pretty sure it happens immeadiateley (pretty sure, but I will try to look into it for positive) I posted somewhere else in another thread after you, Kevin too had a horrible bout this time with the headaches. i wonder about immitrex following infusion, I wonder if because the meningies are swollen causing the headache from ivig if it would have the same benefit. Kevin’s doc said no to it because he is a child. Don’t give up!!! I wont’ let you!!!!
Dawn Kevies mom
December 7, 2008 at 10:41 am
Ditto the port, my 11 y/o son had issues with veins burning and pain, not to mention when he was in a relapse for what ever reason it was hard to access him. if you do get a port, make sure they leave you accessed after they put it in so you can infuse right away. Kevin was in a relapse and needed it right away, being swollen from the surgery made it difficult to access 2 days later. That would be my best advice. When things suck, and lets be real, they do sometimes, I give both myself and Kevin the pep talk, not only your typical “things could be worse talk” but, we have a medicine Kevie, we have to keep doing this because it is our only chance to possibly get our immune system back in order, because of this sickness Kevie, we have become stronger in other ways and more compassionate to others. Also, after a really sucky infussion, I give him a little pick me up present, he usually goes on line and hits me up for another airsoft gun!! We both know he is taking advantage of me, but the smile on his face when the ups guy comes is worth every penny! not to mention the fun he and his (male) nurse have with them during infussion out in the yard the following month! So when tings aren’t going so good, just think about your childre, how you have to forge on for them, how flooding your body with antibodies from ivig gives you the best opportunity to choke out the autoantibodies and possibly one day go into remission. Think about that we have a medicine that works for us and others as back up. Think about all of us here who understand and will help you whenever you ask!!
Dawn Kevies mom
AnonymousDecember 8, 2008 at 12:44 pm
I have been on IVIG every 3 weeks for about 5 years now. If I go more than 4 weeks I begin to have difficulty walking even short distances. In 1995 when I first started IVIG it was infusions four days in a row then 1 six weeks later, and then 1 six weeks after that. Then none for about a year and a half, and then again the same regimen. Some of the way I receive it might be because of my age as I will be 75 on my next birthday and I do have other medical problems. I don’t anticipate ever getting off the infusions.
AnonymousDecember 9, 2008 at 5:30 am
Hi ya chooks,
I empathise with you. Just wanted to add re the other comments for what its worth, talk to your neuro about how you are feeling. Maybe you both can look at trialling a diferent treatment regime, ie PE, pulse steriods, and or immunosuppressants etc if you are feeling so over the ivig. Am definately not supporting any of these treatments over what is currently prescribed for you but think it is worth talking with your neuro about. A combination of treatments may mean less ivig is required.
I too would like see myself on the path to not requiring treatment but understand this may be all in good time.
Am just a few years older than you, also with 3 young children and have been on ivig twice weekly for nearly 2 years also(along with azathiaprine/methotrexate and weekly iv pulsed methylpred) Have improved greatly over last year and am now trying very gradual reduction, have halved methylpred to 250mg (from 500mg) and am appearing to hold on once weekly ivig. (touch plenty of wood!!!!!!) – still on methotrexate. Am dying to get off all the drugs but will continue to be patient and reduce things slowly as definately dont want any setbacks etc.
Hang in there, enjoy your children, just as well we have them eh otherwise i know i would have given up long ago!!
All the best
AnonymousDecember 9, 2008 at 1:23 pm
Well my trial has ended. Since I answered your post, I jinxed myself and am having a relapse! I feel like I am slowly losing it. I noticed I sort of drag my feet instead of picking them up, I feel clumsy and drop stuff more often than I did before. Picking up a gallon of milk is hard and to pour it is a bigger feat. I notified my neuro and its back to a loading dose of IVIG for me starting tomorrow for 4 days. This isn’t a good time of the year for this to happen but since it has I will make the best of it. I guess I will plan on doing the Christmas cards now! I wish I had more of the Christmas stuff done….oh well it will come and go and we will still celebrate the reason. Maybe this will keep my weight down since I don’t feel like going to all the Christmas gatherings! (I’m looking for the silver lining of the cloud) Take Care
December 9, 2008 at 5:35 pm
I am so sorry, don’t give up. Not saying this is the case and I would certainly get the ivig, couldn’t hurt!!! But something else, I thought Kevin too was in a relapse, same thing, hard to walk, stairs, lift his air soft guns, guitar for guitar hero etc. It was some sort of cold that kicked in. Still not sure if the ivig did it, or the cold going away was what made the relapse go away. Anyway, I just want to tell you, don’t give up on your progress, maybe it is just a blip and if it not we have medicine. It will be OK!!! Praying for you!!
Dawn Kevies mom
AnonymousDecember 10, 2008 at 8:06 am
Jan, I drag more in the cold weather too – as you said, just enjoy the things you can do like the Christmas cards and let go of the rest. Play more holiday music if you are going to be stuck at home, and decorate your house first before you write cards – it will put you in the right frame of mind. :p And invite friends over to visit with you instead of getting all fancied up for a party. A cup of hot chocolate with a candy cane stuck in it is quite festive!
Fake it ’til you make it! That’s my motto. 😎
AnonymousDecember 11, 2008 at 8:02 am
Thanks for the concern. I’m doing OK, just a part of life that can’t be changed so I will make the best of it. I was hoping for no more IVIG but its OK just something else to plan around for life. As long as it helps me I can deal with it. Got one of four days done. Its weird but I felt some better last night already. I know that the Dr would say its psychological but I don’t care! Whatever it takes to feel better. So far no headache so life is good! Dawn this wasn’t a “sickness per se” I had a upper respiratory thing about a month ago and that did knock me for a loop but I recovered from that. That’s when I cracked my ribs….another story. Julie I like the sounds of hot chocolate and a candy cane! Wish I could just invite you all over for some! Take Care.
AnonymousDecember 13, 2008 at 4:11 am
[QUOTE=Dawn Kevies mom]Grawplyer,
What do you mean you risk cancer?
i mean since Im moving to methotrxate and off IVIG I swap the risks of IVIG with the risks of methotrexate- cancer.
[quote] Ivig has no risk of cancer, unless you supplement w/steroids or other imunosuppressnt drugs. [/quote]
I know. I was talking about immunosuppressants. I hate them. The made me anemic last time too.
[quote] About the anaphylactic reaction, that is different from the migranes, if you were going to have an anaphylactic reaction, I am pretty sure it happens immeadiateley (pretty sure, but I will try to look into it for positive) [/quote]
I didnt say the migraines and anaphylactic shock were the same- they arent. The both are caused by the same thing – an intense immune reaction to the IVIG.
Anaphylactic shock won’t necessarily happen immediately. It is always a risk during the infusion which is why epi pens and iv benadryl usually are on hand.
[quote] I posted somewhere else in another thread after you, Kevin too had a horrible bout this time with the headaches. i wonder about immitrex following infusion, I wonder if because the meningies are swollen causing the headache from ivig if it would have the same benefit. Kevin’s doc said no to it because he is a child. Don’t give up!!! I wont’ let you!!!!
Dawn Kevies mom[/QUOTE]
the thing that stopped my migraines most often was benadryl – but sometimes nothing would
cant take it anymore with IVIG
If the methotrexate makes me anemic then its plasma pheresis – i reallllllllllllllllllllllllllllllllyyyyyyyyyyyyyyyyyyy dont want a tube in neck
AnonymousDecember 16, 2008 at 10:52 am
I received IVIG every 4 weeks for 2 years. I was also started on CellCept 1000mg twice a day a once I was diagnosised with CIDP instead of GBS. You must take Cellcept or some type of immunosuppresant for 3 months to recieve the full benefits of the immunosuppression. So you must be on both IVIG and an immunosuppresant. Then you can try to stop the IVIG. When my neurologist stopped the IVIG I first went from receiving it every 4 weeks to every 5 weeks to every 6 weeks then he stopped it. I have remained the same. I still take Cellcept 1000mg 2xs a day. He claims Iam in a drug remission. My last dose of IVIG was July 2007. My symptoms have not gotten any worse. Good luck.
AnonymousDecember 20, 2008 at 8:22 pm
I have been getting IVIG for 10 months now and everytime I think about how I will have to do this for the R E S T of my life, I just get even more depressed. I have noticed that I get really angry a few days before infusion and I scream and yell at everybody. It’s not fair of me to act like this! I don’t want too, but It just happens…..I’m going to try and control this anger.
I pray and ask GOD to please forgive me, and let me not take IVIG for granted, because I know there are so many of US (CIDP/GBS) who really need IVIG and can’t get it. My heart goes out to these brave people who need it. My point is! I AM SICK AND TIRED OF IVIG AND THE HEADACHES AND TREATMENT DAYS THAT SEEM TO COME FASTER THAN I CAN TURN AROUND, but I’m very thankful for it.
I want to quit IVIG too 😡 :mad:……BUT IF I DO!!!! I WILL PUT MYSELF AT RISK OF A SET BACK, AND THATS WORSE THEN THE HEADACHES.
Sorry for venting like this, but I really needed to do so.
December 21, 2008 at 3:40 pm
How have you been? I left a message on your phone a week or so ago.
DAwn Kevies mom
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