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Guest Alex

Starting I V I G

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Guest Alex

OK,

it's now official. I'll be starting my IVIG infusions next Tue.

Anyone who has had this type of treatment...please, please, please ... I'd appreciate any tips, tricks, anything that I should know about that would make this treatment successful while minimizing the side effects. I know we can't give advice here, but if there is anything you think I should know/do/try please PM me.

My awesome drs have ordered 125 mg solumedrol IV to be administered prior to the infusions and I'll be getting 1 g IVIG/kg for 2 days (one gram next Tue and one more gram the following day). I was also told that each infusion can last up to 4 hours, but that I'll be able to talk to the nurse administering it to determine the "best" infusion rate for me...from what I read, the slower the rate the better, right?! Also, I'll have 3 more monthly infusions after that, then my drs will reevaluate me and we'll go from there.

Even if you don't have any experience with IVIG, please keep your fingers crossed for me. I am excited to give this a try but I am also a bit scared about possible side effects and what not.

Thank you.

Alex :)

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Alex:

I'll be keeping my fingers crossed for you! Please let me know how it goes. My daughter is scheduled to start IVIG infusions soon (probably in September).

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Wishing you the best of luck trying this Alex, keeping everything crossed for you!!!

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Guest Alex

Jpjd59, thanks. I will definitely keep you posted. Is your daughter diagnosed with POTS as well?

Corina, thank you! I sure hope it will help.

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Alex:

Yes, my daughter was diagosed with POTS initially. Now the doctors think it is because of some kind of autoimmune issue going on. Is your insurance going to cover the IVIG infusions? (we are awaiting word to see if our insurance will cover it).

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Guest Alex

Tobiano, Dave thank you. I will definitely keep you posted.

jpjd59 - thanks for getting back to me. I guess my story is similar to your daughter's as my drs are thinking there is some autoimmune issue at play. They want to see how I respond to IVIG and go from there. Luckily for me I don't have to deal with any insurance as I am in Canada and this treatment is fully covered by my provincial plan.

Alex

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I was on IVIG for 2 years. I also started with 3 days of infusions followed by weekly infusions that went on for 2 years - I could not tolerate the "normal" infusion rate. The infusions had to go in very slowly consequently, what should have taken less than two days for the loading dose took about 3 full days. The weekly infusions took 8 hours a week. Since IVIG is a protein, your body eventually makes antibodies against it. The IV solumedrol should help suppress this response. I would also ask your MD about IV Benadryl as that also assists with allergic response to the foreign proteins. I stopped the infusions when I could no longer tolerate the adverse symptoms - I had developed a full-blown allergy to it. Once this happens, you can never go back to IVIG. I have to say, however, that during the 2 years it worked, it worked quite well. It was the first time I ever had any relief from the dysautonomia symptoms and allowed me to go back to work full-time - even if it was a desk job. I truly think without the IVIG, I would have died. I had reached my end-point: extremely low BP, 70mg of midodrine a day, flourinef, mestinon, beta-blockers, and others no longer were very effective - I was actually planning my funeral when everything turned around with IVIG.

I hope it works great for you and lasts a long, long time. Remember, everyone is different - you may not have the same adverse reactions I had - I know people that have tolerated it quite well with minimal symptoms. One more thing, be sure your MD has ordered you something for pain just in case you have any type of headache with the loading dose.

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good luck I am still waiting to start mine. although I am still in the hospital recovering from j tube surgery keep us posted.

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Guest Alex

E Soskis,

thank you for your input and I'm sorry that this has stopped working for you.

I was told that I'll be able to "negotiate" the infusion rate with the nurse, so I hope I'll find someone that will be willing to go slowly...at least for the beginning.

I did read about benadryl being recommended, and I casually mentioned it to my rx-ing dr but he said that he wants me to have solumedrol prior to the IVIG and that benadryl would not be necessary?!? I will have to see what the administering nurse has to say about this, but I doubt the nurses can take decisions on their own. I was actually thinking of taking a benadryl prior to going to the hospital ...worst case scenario I'll be drowsy/sleepy through the procedure. I haven't decided what to do yet.

As far as pain/headache meds, I have a nice supply of tylenol # 3 and that has helped in the past, but hopefully I won't need it.There are some that recommend 1000 mg regular tylenol every 4 hours for the infusion associated headaches, so maybe I won't need any heavy duty stuff. I'm actually more concerned about nausea as a possible side effect - I have nasty allergic reactions to the most common nausea meds, but I'll cross that bridge if/when I get there.

Katie, Kim, thanks for your support.

Alex

Edited by alex74alex

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Excited and happy for you. Keep us posted. I'm sure you will do great and hopefully this will help you have a better life.

Rachel

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Alex - I think I missed something. Did you test positive for auto-antibodies? Is this AAG? Best of luck with your treatment. I hope it works!

Jpjd59 - Am I correct that IVIG was approved for your daughter on the suspicion of something autoimmune - without any positive bloodwork?

How the heck are people getting IVIG? The last Dr. I saw said we would need to find evidence of autoimmune to get it.

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Guest Hanice

Omg Tues as in tomorrow!?!? Yeay! You're going to be a ok! Don't be scared. The benadril prior doesn't sound like a bad idea though. Please post a.s.a.p. about tomorrow!

Good luck and hugs

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Guest Alex

Rachel, thank you!

Naomi, I am positive for the autoantibodies, low positive, yet positive. With this in mind, it took me one whole year of begging and pleading to get this treatment. The dr who has finally agreed to order it even suggested I see a psychiatrist at one point. :wacko:

Do you have any suspicion that you may have something autoimmune going on?

Hanice, Tue as in one week from tomorrow. Will keep you guys posted.

Thank you everyone for being here for me. It really means a lot.

Alex

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I know this is what you wanted Alex, so glad to hear it. Seems like Canada is ahead of the curve on considering this treatment. Love to hook your doc up with my doc here in AZ so they could compare notes. It is harder to get ivig approved in the USA.

I've now been on ivig over two years. I get monthly infusions. There is also subq available, it has less side effects and you can give it to yourself after training, but it has to be done once a week. I can't stick myself, so I've stayed with the ivig. As some of you know I was only approved as they uncovered I had CVID a primary immune disease which ivig was first created to treat. My monthly dose is higher then the avg cvid patient because of my autonomic neuropathy. So, it is treating both. I believe it has stopped my decline, but has not cured me. My infections and low grade fevers almost never happen anymore.

Tips for infusion! Primary immune has great tips. However, this is how I manage the ivig flu and headache. Even if you do get them, I feel those side effects are worth it. Just watch out for the symptoms of aseptic meningitis. I now get my infusions at home, so it changed from the infusion centers protochol.

Premeds are important. I take two 500mg of tylenol before. I also take benydryl 25mg to start. If you don't have to drive yourself taking the benydryl on the way there will keep you awake enough to get started. IV benie knocks you out faster but is out of your system faster, if you do have to drive yourself. However, for me it burns bad going in and they have to give it real slow. They never added it to iv fluids, that might have made it easier. IV steriods are pretty standard to help stop reactions. They do work well for that. I however could not take steriods because I'm prediabetic/pcos and my weight blew up with it. So watch for weight gain, unless your already skinny. At home I now have hydromorphone and diazepam, never taken together, but they have pretty much stopped my ivig headaches if the other meds don't work. I take one or the other if I start getting one. Which for me can happen up to five days post infusion. I wait to add the other till the first one is out of my system, if the first one hasn't worked well enough.

Hydrate, hydrate, did I say hydrate!!! In the days before and after. I use smart water as it has electrolytes without the sugar.

Infusion rate. Most hospitals have machines that tirate the speed. In my opinion it should start very slow only working up to 25 in the first half hour and it should take an hour or more to even reach final infusion rate. This part should never change, the final infusion speed my be increased with tolerance. After two years I still am only at 125. I would never go higher then 150 anything over that is crazy IMHO. Some people can do it though.

Just remember IVIG will help it will not cure and it is out of the body within 3 to 4 weeks. I notice as it wears off. That can vary per person because everyone's metabolism is different.

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Guest Alex

AZ girl.

thank you so much for all the tips. I guess I'll be taking some tylenol and benadryl before going to the hospital ;)

Also, I will keep an eye on my weight - I still have some extra pounds courtesy of florinef, and courtesy of me being unable to exercise much, but you can't have it all, can you?!

Sounds like IVIG really helped you and I hope it will continue to work for you.

Alex

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Alex, I'm so glad your perseverance finally paid off! I really hope you get the desired results. It been a long time coming. Hoping you feel better with every passing day. Wishing you strength and comfort. Shona

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The only suspicion for me is the small fiber/autonomic neuropathy - Doctor said the only good explanation at my age is something autoimmune. Let us know how it goes. Hope this will make you much, much better!

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Guest Alex

Canadiangirl, thank you! I hope it will work well and I will see some improvement.

Naomi, I'll definitely let you know how it goes. Also, I'd say it wouldn't be unreasonable for you to try to get a second opinion about your neuropathy. Hopefully you will find a doctor willing to order the Mayo autoimmune dysautonomia panel for you. Just don't give up.

Alex

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