just started gamunex

    • Anonymous
      October 23, 2010 at 11:37 am

      yesterday I had my first infusion of gamunex. I took octagam for over 3 yrs and was continuing to make improvements over that time. As you may know octagam is no longer availible in the US.

      6 wks ago we tried gammagard. From the get go it felt toxic. I did 2 infusions of gammagard, and then said no. My body was wracking with pain. I decided I needed to take a break and let the toxicity clear. I did ok for a few wks but gradually my sensory neuropathy got worst so I could only sleep when covered very warm and all skin covered including towel on my face and sometimes foam earplugs for skin sensitivity in ear canals. I also had a couple of episodes of not being able to swallow. I’d go through the motions, and the liquid would bounce down my throat and be back in my mouth. Second try I would get it, so I didn’t get alarmed as it just happened a few times.

      I went to my regular appt with my neuro on Monday, and he said we needed to act, so I had my first infusion of gamunex yesterday. Since Monday, I had some eye muscle problems, like muscles getting frozen in one place, and vision while moving like someone walking or running with a movie camera, and having to move my head instead of eyes to see certain directions. So I got validation that it’s ivig time again.

      I was really hoping that the other sysmptoms, skin and swallowing were just a transient passage to maybe my body learning how to heal. I guess that’s not the case. I’ll need to keep his fashion port for a while yet.

      So yesterday I got 35 gms gamunex. Did ok during infusion a bit of head ache and tired, maybe just the benedryl. After ivig I got 500 ml saline. Then chills and fever started. High was 102.9 last night. Fever broke to 99.7 this am and my normal 97.9 now. my left hand is stuck in a clenched position. All my numb skin areas are having a dull buzzing pain and I’m exhausted.

      I’m thinking I’m gonna sleep the day away. It’s a shame cuz it’s really beautiful out, but just going to the bathroom and getting a drink of water is hard right now. Ugh! Afraid I shouldn’t have ignored symptoms coming back! But was so freaked out by the weeks it took for second dose of gammagard pain to go away, I just didn’t feel emotionally like I could jump right back into a new trial.

      This disease is so discouraging. I relapse too quick anytime I miss ivig for more than a couple of weeks, which between insurance and medicaid has been quite a few times over the past three yrs. This was the only time I chose a break, and now I gotta work my way back again.

      Taking hints and encouragement…..

    • October 23, 2010 at 1:48 pm

      wish i could give you more info on the ivig but i have only had gamunex—so nothing to compare it to. I do find that if i drink tons of water and cut the benedryl dose to 25 mg i can avoid the headache MOST of the time, not always a guarantee–but it helps. I havent had a lot of ivig –but am finding that i respond a little differently to each one. There was one infusion when i felt nothing–and wondered if they just didnt infuse me with saline –lol. my last one i felt great after—-its so hard to tell…the cidp has good days and bad days and then we get good ivigs and not so good–no wonder its so hard to figure out what going on??? but stick with it—from what i read in here people do seem to find things or combinations of things that work for them and its so different for everone. hope you find what works for you soon–until then stay strong, take one day at a time, best of luck…Lori

    • Anonymous
      October 25, 2010 at 6:05 pm

      I agree with Lori. I was just diagnosed in July and have had 3 doses of Gamunex and will get the fourth next week. Anyway, this is the only type of IVIG that I have had so like Lori I do not have anything to compare it with. I had different reactions to each one:

      1st—Was given a loading dose during two days–I had fever about the same as you described that subsided in 24 hours, but I felt like I was dying—no energy and a migraine headache even though I did drink a lot of fluids. It took four days to recover from it. On the fifth day I felt okay and was able to go back to work.

      2nd—No headache and felt great.

      3rd—Slight headache and very lethargic—in fact am still very tired. Was able to return to work after one day of bed rest, but was not feeling very good.

      4th—I am to receive my fourth treatment next week and also afterward will get a thorough exam by the neurologist including EMG, etc. Yuk!!!

      I was skeptical when I first started it but I have had some return of feeling in my feet/legs but disappointed that it was not a dramatic change. It is easy to get discouraged because you do not know what to expect when you wake up the next day. I try to take every day in stride and hope for the best.

      I wish there was a magic bullet for this, but alas we are all different and what works for one may not for another. Hang in there.

    • Anonymous
      October 25, 2010 at 7:53 pm

      One is to do the whole ‘pre-meds’ route…. I’ve been up to 3 Benedryl AND 3 Tylenol as pre-meds for infusions. Now I’m down to 3 Benedryl b ut the infusions are at home, and I don’t have to [EEECK!] drive.
      Second is to try the other IG products out there. Here is a list of IG products available according to IG Living Magazine [free] sponsored by the IG manufacturers to get good, useful and factual info to IG users: [url]http://www.igliving.com/ResourcesIGSites.aspx[/url] This mite give you the info you need?
      I have also found that the day before and during infusion days? I eat some protiens, but lite ones and super-hydrate [including a Gatorade or two, PLUS water till you seem to slosh?] To enable your body to wash OUT all that the IVIG ‘overcomes’.
      I’m usually either a lump, a semi-zombie or dramatically hungry after my final infusion! I sleep, then eat a bit of good protien and a balance other things [veggies and starches].
      Don’t forget, in a way? The introduction of IVIG is to ‘override’ your malfunctioning antibodies….there is a sort of war going on in you.
      Then after all that? Do keep in mind that many simply cannot tolerate IVIG! The #’s range from 30-60%! Then, realize our alternatives aren’t cheap or easy any which way we go!
      If it were MY DOC? I’d try doing the ‘2 benedryl and 2 tylenol’ combo? Then adjust up one or down another and see what happens…. That’s what my doc did to me! And Yep!! Those head and body aches are NOT FUN!
      Hope and maybe some laughter in your life soon!

      PS? I put my foot down at FOUR of either Benedryl or Tylenol! That sort of ‘cure’ can hurt as much as the problem.

    • Anonymous
      October 26, 2010 at 12:32 am

      Thanks for the replies! Fortunately the worst was one day. And the body aches were not fun, nor the chills with the fevers but it was still easier than gammagard was for me. I have another infusion this wk and next and next….

      Since the fever though nasty cleared pretty well after 24-28 hrs, I’m feeling more hopeful about this wk. I do hydrate signifigantly all the time, and very much sloosh on infusion day. I hoping that the 5 wks w/o IVIG was the major cause for all the heat. I’ll send an email to my Dr and see if he has any good ideas for avoiding the fever.

      So far IVIG has been nothing short of a miracle for me, and I’m still hoping and praying that someday I won’t need it. Until then, the fashion port will continue to drawn a summertime look of question. Someone has to do it! 🙂

    • October 28, 2010 at 4:11 pm

      The rate of infusion can have a lot to do with the side effect. Initially they ran my Gamunex at a 300 rate, but side effects were bad so we slowed to 200 and no further problems. For pre-meds I get two tylenol, two benadryl and 125 mg IV solumedrol, 30 minutes prior. Good luck with future infusions.

    • Anonymous
      October 28, 2010 at 9:02 pm

      MUST be adjusted, as needed? And definitely w/a doc’s knowledge. At times tho, you can experiment w/say two instead of three either Benedryls or Tylenols,…depends on how well you are ‘taking it in’ all the way thru. I’ve found that IF I’ve some sort of headache coming on? I’ll take an extra tylenol w/in an hour of completing the infusion-IT helps! And the options for getting an aseptic meningitis? Are not FUN AT ALL! it’s part rate of infusion? Type of infusion [depending on what your IGGa tests indicated] and thus your tolerance for the product and the solution it’s mixed in. Some of us can tolerate some mix solutions better than others… And I have to tell you? I was incorrectly ‘substituted’ every cheap alternative available when I’d gotten the meningitis!
      For the first FOUR months on one year? I’d been substituted 7 of ten infusion times the prescribed Gammunex for other brands and charged the Gammunex rate! The cost to your and my insurance companies can get a bit rich!
      Thing is to do all you can to avoid infusion problems yourself? Then discuss the issues IN detail [keep notes] w/your prescribing doctor.
      All my substitutions make me think I was either crazy/imagining things [at the time not KNOWING about substitutes] or ready to give up! Changed infusion providers and that aspect of ‘quality control’ was maintained for quite a while.
      Your fever tho? THAT IS something you must bring up to your doc…to either see if that awful ‘something else is going on’? OR IF it’s merely a reaction to the IVIG…that can and should be accomplished by three blood tests specifically for immune responses – Day before infusions? Week after, and Day or two before the next one…. They Can specifically target markers for IG issues and while expensive? Checking this stuff out could save your life in the long run. Further? IF you show some good responses? Means the stuff is working! Making you ‘eligible’ for more! [I’d do a jig here? But, I’d likely fall over..[SIZE=”1″]sigh[SIZE=”3″][/SIZE][/SIZE]. But? The spirit is there!
      Hope things work out…here is the Gammunex prescribing info site…read IT ALL! PLEASE!!! url [url]http://www.gamunex.com/media/Gamunex_Prescribing_Info.pdf[/url] url
      Hope your eyes don’t cross in the process? Hugs hope laughter and smarts!

    • Anonymous
      October 29, 2010 at 9:28 pm

      Well, my second infusion of gamunex was yesterday, and it went well. A bit of headache and body aches at bedtime, took, 2 extra strength tylenol and 2 benedryl.. wok abt 3 hr later sweating up a storm, and aching all over, but it only lasted an hr! No fever! Got up today and had a really nice day.

      The gamunex is turning out to be so… farr… better than the octagam was for 3 yrs with regards to side effects. I’m rather excited!

      Now the biggest worry is what will happen january 2011, with either my current insurance co which is leaving the state, or if I have a new one and getting approvals. All I’ve had since starting IVIG is a repeat small tissue biopsy after 18 months that showed a 300% improvement in live sensory nerves in the punch sample, and bloodwork. I’m pretty anxious about what a new insurance co may want to cover. I’ve never had an LP as my nuero believes they are a last resort test, with variable validity. I had an EMG and nerve conduction study done, but I was so sick, there was no pain.

      But for today the good news is that my body likes gamunex!

    • Anonymous
      October 29, 2010 at 10:36 pm

      thing which was affected before starting IVIG! To me? Any sweating is a good thing these days…guess that says a lot as to how my peripheral nerves were affected and telling my lymphatic system ‘what to do’.
      Before I’d started IVIG? I’d not sweated at all from my ‘pn onset’. Super hot weather was a potential disaster, as one can become dehydrated and not realize it until too late…. Worse is the being Super COLD when it isn’t really cold. ‘Sort of a combo of a ‘Goldilocks’ and ‘pricess and the pea’ syndromes?
      In that finding Just RIGHT is harder than you thought.
      I’ve been on Gammunex for about five years plus and done well on it, better than on Gammagard. But each of us IS different.
      As for insurances? Grill them closely…but better yet- grill your doc closely as to his participation in that particular plan? Docs KNOW [or at least their staffs?] which plans they work with best and can get you the most help thru…. the next questions are COSTS vs. Benefits and what new hoops you mite have to go thru? But, usually IF you qualify for IVIG from one plan? ‘Most’ follow the protocols… It’s then up to your doc[s] to keep the arguments for success in treatments from their quarter up to date..
      BTW? I’ve also just checked out ‘changes’ for my plan in the next year? Only thing I can discern so far is that my own personal deductible has gone UP again. Still, all in all? I get far more benefits than I’m paying for…it’s pay- back to me for being in the same plan for my almost total lifetime….
      I do hope this helps a little or a lot? It’s hard work to get things on track the way you would LIKE. But it’s an education getting there! Hugs and laughter along the way!

    • November 23, 2010 at 9:45 pm

      Erin–im not sure if its just the way my rx is written or if its to do with the type of cidp but i have gotten nothing but gamunex since starting ivig. I never even realized that they substituted until last week when I asked the ivig nurse. she told me that my order specified only gamunex and that was why it was never substituted. if you do continue to have problems maybe you could ask the dr about it. I hear you–my body loves the gamunex too–I love the energy i have getting it–makes me feel more like my old pre-cidp self!!: ) Lori

    • Anonymous
      November 23, 2010 at 11:03 pm

      I wholeheartedly agree with Lori, Gamunex is the best. My IVIG prescription also specifies Gamunex, with no substitutions allowed, and I have never received any other IVIG product. I had some side effects at the beginning, but those quickly passed. I believe that Gamunex is the only FDA approved IVIG product for CIDP, which is what I have.

    • Anonymous
      November 29, 2010 at 12:29 pm

      For what it’s worth, I had side effects with Gamunex and switched to GammaGard. I’ve been using the latter brand for at least 3 years with no problem. I don’t believe one brand is necessarily better than another. I think it’s just that different brand use different purifying agents and some people react more to some agents than others.

    • Anonymous
      November 30, 2010 at 9:12 am

      Well, after side effects from both gammagard and gamunex, I have decided to work with an alternative protocal involving detoxing, immune support, and pathogen elimination full time while still consulting my neuro for back-up. I was weaning nicely from octagam over the spring and summer finally, but since that product is no longer available, and I’ve tried the human test dumbie trick to no positive results, this is my next step.

      I actually feel more relaxed… less stressed, less anxious, and optimistic. I’ve already been so close to death a few times in the past 6 yrs that this is an easy decision, now that I’m taking the time to make it. I’ve taken a little holiday to VT for this wk visiting my daughter and having the time while she is at work all day to take care of me. It’s making for a good transitions and new start to the next adventure.

      Thanks everyone for your help and support over the past few yrs. I’ll keep checking in from time to time. And let’s see how this goes!

    • Anonymous
      November 30, 2010 at 10:11 am

      I am in Burlington, VT. So, if you are ever up this way, please feel free to look me up.

      Brian Sullivan