Hello again...glad to hear that you feel comfortable here and we are glad to have you!
I have a friend that is contemplating the IVIG therapy and apparently we only had one person that had tried this and she doesn't seem to be around! I will try to contact her for you though and see if we can get the two of you hooked up ok?
I have sent a note to our Forum member that has tried the IVIG therapy explaining that you would like to discuss this with someone that has experienced it and I hope that she will send back a positive response...I will let you know. In the meantime you can do a "Search" by just typing in IVIG Therapy in the search box and I believe that a former conversation regarding this subject will come up ok?
Hello! Thanks, Rena, for contacting me.....and sorry ALL for the long absence. Yes, I have been on IVIg two separate times [about a year apart] for MS treatment. The first several months around besides some spinal-type headaches post infusion, I did very well on IVIg and definitely noticed an increase in energy. Unfortunately, I developed a rash and was taken off IVIg and started Tysabri. Needless to say, that was a bust. Three flares in five months. My neurologist threw her hands in the air and sent me back to the immunologist [that had been treating me with IVIg].......I was gung-ho to try it again after reading that sometimes just a brand change will get rid of a rash. Well, we began IVIg and the rash came right back -- but I wasn't giving up! We went through three brands and finally settled on one that didn't seem to be as rash provoking -- plus we added hydroxyzine for itching and Claritin. The rash has been confined to just my palms and soles of feet this time around -- BUT, there has been no energy increase and after a terrible flare that put me in the hospital for five days this spring my MS has been progressing rapidly. They even added a monthly gram of Solu-Medrol with the IVIg. I got to six infusions and I just saw my immunologist today. No more IVIg. It is now another drug failure that I can add to every other drug I've been on [with the exception of Novantrone which worked wonders for me]. If you have any specific questions about IVIg -- feel free to ask, and I apologize for this very late response. Thank you to all of you that bugged me ;) about getting my arse back on to share my stories. I have been on in my nine years since dx, in order: Copaxone, Betaseron, monthly Solu-Medrol, Novantrone, Rebif, Imuran/Copaxone, IVIg, Tysabri, and finally IVIg/Solu-Medrol. The future looks rather glum. I am losing the strength and feeling now in BOTH legs and am completely bedridden. I've been rather depressed and that's part of why I "shut down". But I am back now and if I can help ONE person here with what I've endured and made it through -- well, it's worth being alive! On the table for me is a list of things the immunologist gave me to look into [as he does too]: Cytoxan, IT Methotrexate, ATG, Campath 1, and Orencia. He might end up deciding on something totally different? He even mentioned a possible six-month stint on Novantrone again even though I've had the MAX 140mg. I need aggressive treatment for a very progressive disease. Anyone with input - I'd be happy to hear from you! Thanks for being around and reminding me I have things to share that are worthwhile. You're quite a wonderful group of people here.
Azhomie -- How are your infusions going? Are you still on IVIg? It really is a good therapy if you use it early on I think the outcome is better. Where are you in DX?
Hi haven't posted in a really long time until most recent diagnosis of Autoimmune Brain Disease ( Autoimmune Encephalopathy). But saw your question about IVIG treatments. I was on IVIG almost a year ago for 6 months was never diagnosed with MS but my neurologist new that I had some sort of inflammatory disease that was progressing so wanted to try me on this. Unfortunately didn't work for me, although really didn't have many side effects. I really just felt nausea and fatigue afterwards. I know thats unusual because most people get a boost of energy but seems everything about me is unusual lately. I also have seizures due to the inflammation.
I just had a craniotomy a little over 3 weeks ago to get a better idea of what exactly is going on, they needed to biopsy the brain tissue because we were left with no all alternatives. Medications werent working and I was just getting worse.
The good news in all this is I dont have any of the differential diagnosises which my docs were concerend about: early dementia,parkinsons among other degenerative diseases. My pathology showed microglial activation along with extremely rare cells so now I'm on 60mg of prednisone daily.
I've already exhausted the option of re-trying the IVIG so now we need to look into different treatments.
Debra: you mentioned methotrexate, and cytoxan? My doc also mentioned thats a possibility for me? What do you know about those medications? I'm really not looking forward to all this.
I know they are trying to halt the progression of these inflammatory cells which is effecting my cognition and causing seizures and physical manifestations.
I haven't spoken to you in a while, I'm so sorry to hear your not doing well, my thoughts and prayers are always with you!!!!!!
My DX was originally MS in 2001, but my new Neurologist (which I kissed a lot of toads before I found this prince) has also given me the DX of Chronic Inflammatory Demyelinating Polyneuropathy (CIDP). Another autoimmune disease.
My IVIG treatments have been going well. I too, had the major rash situation on my upper torso, but the doctor was able to make some adjustments and get it under control. When I’m on the treatment my feet and palms sometimes really itch! I can deal with that. I gain a lot of energy from the treatments. I have had 3 sessions over the past 18 months. I had a follow up appointment last week and there are a few items that has the doctor concerned, so I'm having another MRI of the brain and more testing done. He wants to see if more lesions have joined the club. After the results come in, we can talk about changes in my treatment or if we'll continue the IVIG treatments.
I live in Arizona and it seems like the summers are always the hardest for me.
I have been dealing with major fatigue for the last several months. The doctor had me following through with a few alternations - Adjustments have been made with medication, I purchased a cooling vest to keep my core temp down and I still have the major fatigue issues.
Also, my tremors have gotten worse. To the point that I always use a straw to drink - so I’m able to use two hands to hold my cup….. The major reason for the very short hair – I was having a dickens of a time with the blow dryer!
Balance has become an issue. On a couple different outings my husband and daughter would turn around thinking I had fallen, when I just stumbled trying to catch my balance. Thanks goodness.
Thank you so much for you response. Keep us posted on how you are doing. I'll also be praying for you :)
Laura - I'm glad to see you're still with us. this is probably one of your best places as what you have (CIDP) is the equivalent of the peripheral form of MS. It's a much better diagnosis, though, because it so often responds to treatment, even tho that treatment is needed lifelong. I do hope you'll stay. There have been several people through here that I thought might have CIDP. It would be great to have you to lend your voice. And be you!
Debra - I am sorry to hear you are so depressed and that nothing is working. We were talking a little while ago on the two small studies (with great results) using high dose IV Cytoxan. Would you like me to find those studies again?
Glad to hear from you! I will pass along any good info I find about these drugs. Quix is going to help us out with some Cytoxan Info (thanks again, Quix). I'll either copy and paste the article or paste a link if I see anything good -- which do you [all] prefer?
i have been ivig for 8 months. when i started i was truely sick, ex. severe numbness imbalance issues, cognitive (all i can remember.) i was on iv steroids for the 3rd time untill is took the best of me. causing a bells paulsy look (they thought i had a stroke) so my neuro said no more steroids... i tride the ivig the first month i felt 72% better untill the second months. 82% better by the 3rd monthe by the 5th month i felt normal, no issues and by month 8 i stopped it because i felt i no longer need it and i wanted to save that option for desperate issues this ivig was a blessing!!!!!!!!!!!!
just make sure the nurse check your temp and bp every 15 minutes before increasing the iv drip. should take 3-4 hours make sure no sooner. my friend got really sick when the nurse did the iv in an hour...so from now on i am going to her house to watch the nurse... when i did ivig i had a pump which automatically infused it the nurse had no say, if she tried to change it (pre programmed) the alarm would go off
one more thing. ivig is made from pooled sources of human blood... i dont know if you can have an allergic rxn but i guess there can be a bad batch tho rare.. people have allergic type rxn if the iv is dripped too rapidly, sob dizzy blood pressure drop and sometimed a fever..
I am so glad that we were able to lure you back here to be with your friends honey! I am so sorry to hear of all the suffering you have been having to endure and I hope that they can find something that will give you some relief! I really hope though that you will keep in touch with us this time though...I think we all know what it is to be down and it's a very personal thing but sometimes the best thing you can do for yourself is to share with other's that have some inkling as to what you are going through. Please know Debra that if at any time you need someone to lean on I have pretty strong shoulders and who knows...I may put a smile on your face or at the very least just listen when you need someone to do so ok? Send me a PM at any time ok?
The friend that is considering IVIg therapy has been away for awhile as I have been but I will try to see her next week and see if she has made any decisions. I will let you know what I find out and again...welcome back...it's GREAT to have you here!
Thank you for your "welcome back" -- I really need to be prodded sometimes to open up when I am feeling like I am too tired and in too much pain to even get up and make it to the bathroom much less get online! I am glad that you have strong shoulders.....I do too, but when dealing with another sad loss of a body function and the disappointment in another drug failure I am not so strong. I cry. I have a great group of health providers that help me keep going. A great doctor is worth their weight in GOLD. Take care and don't be afraid to come to me when you're feeling down! I will let you all know when I know what treatment is next and we can try to find someone out here who's tried it!
Thank you for the links to the articles......I am seriously looking at this as my next therapy [Cytoxan or Intrathecal Methotrexate -- so if you see any good stuff ;)]. I am going to forward those articles to my Immunologist......he really wants me to be a part of researching and deciding what I want to do because of the inherent risks of ANY chemotherapy. I appreciate your help immensely!
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