E Soskis Posted August 20, 2013 Report Share Posted August 20, 2013 I'm not sure why your physician does not want to have IV Benadryl ordered as a "prn" drug. It works in a totally different way than Solumedrol. Benadryl is an antihistamine and blocks the histamine release from allergic responses - it is a front-line drug for allergic responses. Solumedrol is a steroid that suppresses the immune response. They both work together in totally different ways to help block any untoward reaction you might have. I'm just glad you were able to obtain the IVIG - it is a difficult drug to get due to the shortages. I wish you all the best and sincerely hope this will help you. Link to comment Share on other sites More sharing options...
Guest Alex Posted August 20, 2013 Report Share Posted August 20, 2013 E Soskis,I don't know what his reasons were, but to be honest, I was glad he finally agreed to the IVIG and didn't really want to push my luck any further. I know the solumedrol and the benadryl are different classes of meds, but I guess I can always take the benadryl on my own, while the solumedrol has to be prescribed. I am definitely going to talk to the nurse administering the IV before self medicating though.Thank you once again for your input and for your wishes. Alex Link to comment Share on other sites More sharing options...
Psalm 23 Posted August 21, 2013 Report Share Posted August 21, 2013 I'm so excited for you Alex. Wishing you all the best and great success with your IVIG therapy. Janet Link to comment Share on other sites More sharing options...
Akgirl Posted August 21, 2013 Report Share Posted August 21, 2013 Good luck!! My fingers and toes are crossed Link to comment Share on other sites More sharing options...
Guest Alex Posted August 21, 2013 Report Share Posted August 21, 2013 Thanks a lot Janet and AKgirl. Alex Link to comment Share on other sites More sharing options...
kitt Posted August 22, 2013 Report Share Posted August 22, 2013 This is a good and very simple article explaining IVIG and how it's used, and how works.What I found most interesting is how many 'off label' uses there are for IVIG.http://potsgrrl.blogspot.com/2011/10/how-could-ivig-help-pots.htmlThis may be simplistic for people who have studied IVIG, but may help those who are just learning about it.How much are people in the US paying for treatment? With insurance, what's the average co-pay?It was recommended to me by Dr. Klimas for immune deficiencies but I've put it off for now. Good luck with your IVIG treatment Alex!Best,K Link to comment Share on other sites More sharing options...
Guest Alex Posted August 23, 2013 Report Share Posted August 23, 2013 Thanks for your support Kitt.The article you posted helps as it's written from a patient's perspective.Indeed IVIG can be used off label for many different health issues. I know of women who get it as an infertility treatment (not sure if that's even listed on Lauren Stiles' blog (that would be potsgrrl). I would encourage you to look into this as a form of treatment for you - particularly since your dr is willing to prescribe it. As you can see from dinet, many are willing to try this treatment but can't persuade a dr to prescribe it for them. I can't speak to the financial aspects of this though as medical expenses (well most of them anyway) are covered by the provincial health plans in Canada.Best,Alex Link to comment Share on other sites More sharing options...
jpjd59 Posted August 26, 2013 Report Share Posted August 26, 2013 Alex:Good luck tomorrow! Link to comment Share on other sites More sharing options...
Guest Alex Posted August 26, 2013 Report Share Posted August 26, 2013 Jpjd59, thank you so much. Best of luck to you and your daughter as well...September is just around the corner. I hope your insurance will cover the expenses - fingers crossed. Alex Link to comment Share on other sites More sharing options...
AllAboutPeace Posted August 26, 2013 Report Share Posted August 26, 2013 Alex, I really hope this makes a difference for you! I'll look forward to your updates Peace Link to comment Share on other sites More sharing options...
Guest Alex Posted August 26, 2013 Report Share Posted August 26, 2013 Thank you Peace,I'll keep you guys updated.Alex Link to comment Share on other sites More sharing options...
corina Posted August 26, 2013 Report Share Posted August 26, 2013 Good luck tomorrow Alex! Hope this will work for you!!! Link to comment Share on other sites More sharing options...
Guest Alex Posted August 26, 2013 Report Share Posted August 26, 2013 Thanks Corina! Link to comment Share on other sites More sharing options...
Guest Hanice Posted August 27, 2013 Report Share Posted August 27, 2013 Whats going on? Did you do it? Are you alright!? Link to comment Share on other sites More sharing options...
looneymom Posted August 27, 2013 Report Share Posted August 27, 2013 Hi Alex,Hope things went well today. You are in my thoughts and prayers.Rachel Link to comment Share on other sites More sharing options...
Guest Alex Posted August 28, 2013 Report Share Posted August 28, 2013 Hanice, Rachel,thanks for keeping an eye on me.I've made it through day one and I am due for another round tomorrow.Things were quite uneventful this morning. My Dr agreed to tylenol and benadryl added to the solumedrol as premeds and I guess they helped. He told my nurse to listen to me as "I'm the girl who always does her homework, and my suggestions have never been out of line" . Aside from being tired and having a headache that seems to be responding OK-ish to tylenol I can't complain much. I did have a spike in HR when the solumedrol was started, but that subsided once the nurse agreed to lower the infusion rate. They kept me hydrated and have monitored my vitals throughout the whole process. My HR seems to be a bit on the high side (side effect of the solumedrol perhaps ) but nothing this POTSie can't handle.Looking forward to day 2.Thanks everyone for being here for me.Alex Link to comment Share on other sites More sharing options...
Psalm 23 Posted August 28, 2013 Report Share Posted August 28, 2013 Hi Alex,Glad to hear you made it through day 1 okay and are set for day 2. I'm sure your doctor and nurse appreciate all of your knowledge and input. I hope your headache has resolved by now. You're in my thoughts and prayers for an uneventful infusion tomorrow. Janet Link to comment Share on other sites More sharing options...
Chaos Posted August 28, 2013 Report Share Posted August 28, 2013 Good luck tomorrow. Hope it goes well. Please keep us posted. Sending hugs! Link to comment Share on other sites More sharing options...
arizona girl Posted August 28, 2013 Report Share Posted August 28, 2013 Hi Alex,So glad to hear your first day of infusion went well. Sorry about the headache, they do happen. Sound like you did better then I did on my first go with it. Hope today goes easier and you come home with no headache or side effects. It is important to not overdue and get lots of rest the next few days. You can get side effects up to 5 days post infusion. Drinks lots of water!Take care! Link to comment Share on other sites More sharing options...
Guest Alex Posted August 29, 2013 Report Share Posted August 29, 2013 I survived day 2, but I am a bit tired and only have enough energy to thank all of you who have thought about me and rooted for me. I will keep you all posted and I will also try yo address some other "issues" that have been brought up as soon as I can.Alex Link to comment Share on other sites More sharing options...
badhbt Posted August 29, 2013 Report Share Posted August 29, 2013 Alex,So glad you are getting treatment. I hope it gets easier for you and you get some relief.Issie,Yes, for Lyme. Thanks for the suggestion about splitting up the the probiotic. I was taking everything at once. Link to comment Share on other sites More sharing options...
Guest Hanice Posted August 29, 2013 Report Share Posted August 29, 2013 Hey Alex. I hope you're okay and resting. Please be safe and please please please update soon. I hope to hear about it all soon and I hope it wasnt too bad. Link to comment Share on other sites More sharing options...
looneymom Posted August 29, 2013 Report Share Posted August 29, 2013 Hi Alex,Glad to hear you are making it. I assume today was your last day with IVIG. Take it easy tomorrow and post when you feel up to it.Rachel Link to comment Share on other sites More sharing options...
sue1234 Posted August 29, 2013 Report Share Posted August 29, 2013 Alex, glad you are getting through it all somewhat okay, and glad you are beginning this journey. I hope it helps your POTS, if not completely, enough for you to jump back into some new life adventures that you've been missing! I'm happy that you have a doctor that is helping you with all this. Link to comment Share on other sites More sharing options...
Tobiano Posted August 29, 2013 Report Share Posted August 29, 2013 Thinking of you Alex!!! Link to comment Share on other sites More sharing options...
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