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IVIG
May 19, 2009 20:09:13 GMT -5
Post by jeffn on May 19, 2009 20:09:13 GMT -5
So my memory is not the best particularly when I only read the posts and don't "see" the posters. klw1960 is on IVIG and Sammie were you or are you on also? Who else is / was and what has your experience been? How long have you been on it and how long can you be on it etc? One aspect of that interests me about IVIG is that one of the reasons they give it to AIDS patients is to fight infection so that ties in with the infectious theory of SD and why anti-biotics work on SD (one theory anyway). Is it perhaps fighting infection? What have your Docs told you about how and why it works?
I'm an AP guy but I feel that whatever is working for people is the right treatment. I am curious about peoples experiences with other courses of treatment.
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IVIG
May 19, 2009 22:37:35 GMT -5
Post by steve201 on May 19, 2009 22:37:35 GMT -5
Jeff mines an odd story...since mine came on like a flame thrower...full force and flaming insane...after 8 weeks of trying to figure out what was wrong with me...I was put on cytoxan and prednisone...large doses of the stuff...then later I was put on AP and that's where we saw the best results...skin started to soften...like you..whatever works for an individual is what should be done....but in my opinion...I feel we need to be aggressive with the disease.........
Steve
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IVIG
May 20, 2009 10:51:18 GMT -5
Post by klw1960 on May 20, 2009 10:51:18 GMT -5
Hi Jeff, yes I am one of the veterans on IVIG. It is the immunogobulin enzyme that does not fight infection but is supposed to help the immune system stabilize and calm down. I am guessing the application for AIS/HIV patients is to help their immune systems stay strong enough to fight infection not actually fight it for them. A lot of MS patients use IVIG too. I have asked my Doctor several times about the AP therapy and he said that he has not seen enough research to warrent the AP therapy. For all of you that are doing great with AP, it seems as there are just as many that AP doesn't help or have negative results. It is the same with IVIG as I have seen some SD patients try it and it doesn't help them or they get so terribly sick from it they stop. I agree that SD is an individalized disease and what works for some doesn't work for others. Yet, another frustration about dealing with it.
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Peggy
New Member
Posts: 33
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IVIG
May 20, 2009 11:46:52 GMT -5
Post by Peggy on May 20, 2009 11:46:52 GMT -5
I have been on IVIG to get a handle on my CPK numbers, which it did and brought them down to normal. I have terrible muscle pain and the hopes were that the IVIG would lessen that but unfortunately it didn't. It did bring my numbers down to normal though and the hopes are that the muscle damage that was being done will be stopped also. With the treatments I would go from 8:30 am to 5:00 pm for 3 days in a row at the hospital. They got to be real long days. There were pre-meds that were given at the beginning and the middle and on 2 occassions new nurses forgot to give them to me and boy did I get sick. Terrible nauseau and vomitting. The pre-meds were some type of benadryl and something else but were really important to have. Also, I had to fight my insurance to get the IVIG as they first denied it. It wasn't until I had the diagnosis of Polymyositis in addition to the Sclero, Raynauds, Sjogrens and Peripheral Neuropathy that they reversed their decision. I now in fact have been approved for a years worth of treatments but being they weren't working I figured why bother. I have a port in that was put in for the treatments and now I need to decide if I should have that removed. Until I find out about the lung nodule I'll leave it in.
Warm hugs,
Peggy
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IVIG
May 20, 2009 18:38:38 GMT -5
Post by jeffn on May 20, 2009 18:38:38 GMT -5
I bounced around cyberspace a little at lunch and was reading about iVIG. Some sites say it fights infection, some say it prevents infection, and some say it provides the missing antibodies in AIDS patients to fight infection. I asked a couple of Doc friends last summer about how it works with SD patients and one said it attacks infection and helps regulate a proper immune response. The other went with the immune response answer. So I guess like AP and other SD treatments there are lots of different thoughts on why they work. I think that is long as something works whats not to like.
How often do you guys get the IVs? Every month? With SD patients how long can you receive the IVs?
I have read that some on IVIG get hives after an IV. In the beginning of AP I got a hive reaction. Wonder if it is a similar mechanism? So many questions huh.
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IVIG
May 21, 2009 9:18:45 GMT -5
Post by klw1960 on May 21, 2009 9:18:45 GMT -5
I get mine every 4 weeks for over two days. I also take the pre-meds of benedryl, tylenol and celucortif (a steroid) to help with the side effects. It takes 5-7 hours each day. 24 hours after the 2nd day I get a 18-24 hour migraine sometimes with the nausea and then feel achy/flu like for another day. I never had the hive issue. I believe one reason there is so many views on how it works is because it is fairly new for SD patients and there aren't that many on it because of the insurance issues. My treatments average 40,000-50,000 per month. For a while they went down into the 20,000's but now are back up.
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IVIG
May 21, 2009 15:53:15 GMT -5
Post by jeffn on May 21, 2009 15:53:15 GMT -5
Thanks for the info. Now how long do you continue the monthly treatments? Is there an end game or do you just continue taking it? Glad the headaches and side effects don't last long.
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IVIG
May 22, 2009 7:00:54 GMT -5
Post by klw1960 on May 22, 2009 7:00:54 GMT -5
we schedule the treatments 3 months at a time and then decide whether to go on or not. I suppose the end will come if I get closer to or acheive remission. Since my doctor is kind of using me as a guinia pig and for his research and I can afford it, I assume he will want to do it as long as possible to help prove if it helps SD or not. I remember when you and Laurie joined the board, how much have you improved since the beginning? karen
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IVIG
May 22, 2009 11:15:02 GMT -5
Post by jeffn on May 22, 2009 11:15:02 GMT -5
Well Karen I hope you get off it soon because that will mean you are doing really well Oh and if I take your meaning I am not Jeff as in Laurie and Jeff (the Fangs). I'm Jeff N. Joined the old board in the fall of '06. We are both wonderful guys but different. ;D
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IVIG
May 22, 2009 12:19:30 GMT -5
Post by klw1960 on May 22, 2009 12:19:30 GMT -5
sorry about that one. wasn't paying attention. All the guys on the board are wonderful but maybe Steve ( just kidding). So how long before you noticed the AP working and how much improvment have you shown?
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IVIG
May 22, 2009 19:48:46 GMT -5
Post by jeffn on May 22, 2009 19:48:46 GMT -5
Karen - I have a word doc. that I sometimes send people who ask me about AP. It is a brief history of my experience with AP, mino in my case. I have to give it a look and see if it is presentable and will then post it here in the AP section and over in the progress area on RBF as Cheryl has been urging me to do. Well at least she did in the past I think she has given up on me. I just was not ready but think I am now. So stay tunned. Maybe later in the weekend. I am a slow typist so I don't want to type it all again. I just never really had to type so I never learned properly.
So far the AP has worked well in my view.
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sammie
Junior Member
Posts: 64
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IVIG
May 25, 2009 11:35:32 GMT -5
Post by sammie on May 25, 2009 11:35:32 GMT -5
Hi Jeff, Sorry it took me so long to answer. I have been on IVIGs since Dec. '07. I get one every 4 weeks, usually a nurse from Hopkins home care comes to my house. This week I have to go to Hopkins, as I developed hives after my last infusion. This has happened a few times and every time they make me come to the hospital and I am just fine. Personally, I think that should just have me take benadryl before the infusion and I will be fine. They started me on them to help my immune system and to see if it would help my lungs and frequent pneumonias, which it has helped to some degree. I still get pneumonia but not often like I was in '07. It has also helped all my different white blood cell counts, they used to be off the wall but now for the most part they are normal. And apparently I will be on the IVIGs indefinitely. Sammie
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IVIG
Jun 23, 2009 17:30:10 GMT -5
Post by lindarn on Jun 23, 2009 17:30:10 GMT -5
I have been on IVIG for 4 years now, but am on it for an immuno-deficiency diagnosis. I used to suffer from very frequent respiratory infections, and at the same time the doc.s were trying to diagnose me with Lupus, they found that my IgG numbers were way low. Now since then I have been diagnosed with SD also (GI system only). I receive my IVIG every 4 weeks, at my home from a nurse, and it has cut my infections...illnesses way down. I have always wondered if it hasn't also slowed the progression of my SD.....who knows? My insurance covers it....thankfully, as it is extremely expensive.
Linda
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kate
New Member
Posts: 21
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IVIG
Jun 24, 2009 19:35:06 GMT -5
Post by kate on Jun 24, 2009 19:35:06 GMT -5
I have a question about IVIG'g. What kind of drugs are you getting with IVIG'g. The drug that my new rheumy has talked about wanting to give me is Cytoxan, which is a chemotherapy drug. Is that the type/kind of drugs y'all are getting from the IV's? I don't know that much about it, but due to some tests I've been having the past month, he has talked about giving me Cytoxan through IV. I go Monday morning to talk to him, so any response would be greatly appreciated before then. Thanks.
Kate "Texas Stickgirl" ;D
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IVIG
Jun 24, 2009 19:53:37 GMT -5
Post by Cubby on Jun 24, 2009 19:53:37 GMT -5
KLW1960: Just wanted to mention that LAUREN over on Inspire did IVIG with Cellcept and was in remission in about a year.
I don't know anyone on AP who was not helped by it. Most of the people I know in full remission did the AP with nothing else (except for Lauren mentioned above). A few, like Beebell and Christine did 2 kinds of AP together. Some do pills by AP along with IV AP. A few do ap with CELLCEPT with it -like Steve 201 and some others I know. I do it with Photopheresis, but don't know anyone else who does it with AP.
I noticed the first improvement within a month (the finger ulcers disappeared) but it took almost a year to really notice a big improvement.
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