Hello all, I hope everyone is doing well and has their disease under control. I have been doing fine and continue to get my IVIGG treatments every other week; 30g one treatment and 35g the next. I am wondering if anyone still has symptoms and can "feel" the IVIGG working? My children just recently began school again. One of my daughters has already contracted an upper respiratory bug (my trigger). I began having sore muscles on Saturday in my calves. Sunday I had to wake up very early for my job, by the afternoon I was wiped out. The muscle soreness was gone, but I couldn't keep my eyes open and slept the afternoon away. It was an odd sleep, my family could not awaken me. I could hear them, but could not manage to move, it was too taxing. Monday I woke up fine and now I have very minor upper respiratory symptoms; drainage, headache, and a tickle in my nose and throat. I do believe the IVIGG is keeping me from having a full blown attack. Does anyone else still get symptoms even though they are on IVIGG, or are you constantly healthy? Does this mean I may need to up my dose so I do not get symptoms? Or does this mean that I have found the correct dose because the IVIGG is doing it's job. I am thankful we have a treatment plan, just curious as to others experience with the IVIGG. Thank you. Cristina

Christina, I get IVIG every 4 weeks - now on Octagam, which is a lot more fluid for some reason vs. the Privigen I used to get. I have been on the full dose of IVIG since July of 2011 and have not experienced any CLS symptoms since. In fact, I have not had hardly any sicknesses since on this. Once I had a flu(vomit/diahrea) back in March 2012, but ending up having no SCLS symptoms. May be helping my immune system overall. Heading out on a trip to Europe on Friday - have all my paperwork printed out and hospital information along, just in case. Marc

Cristina, I am glad that you are getting IVIG on a semi-monthly basis, but if you're not feeling 100% normal, and you are experiencing episodes of muscle soreness and of lethargy and so on, the only *scientific way* to tell whether you are having residual, mild episodes of SCLS or not is for you to have your blood tested each and every time that you don't feel well. If those tests were to reveal a level of hemoglobin that is above the normal range, then that would be a good indication that at the time you were tested you probably were having a mild episode of SCLS -- depending on how far off from the normal range you were, of course. And such evidence would then allow your doctors to adjust your dosage and timing of IVIG infusions for the purpose of eliminating said residual episodes. If on the other hand those tests were to reveal that your hemoglobin was within the normal range, then you would know that at the time you were tested you probably had caught a cold or flu or something else from your daughter -- or whomever. (IVIG boosts your immune system, thereby helping your body to fend off certain illnesses, but it doesn't prevent them all.) In sum, _you need to get out of the guessing business_ by having your blood analyzed whenever you don't feel normal. For that purpose, you can purchase a Hemocue device as I and a couple of other members of this community have done, in which case you can test your blood yourself and get an instant result any day, night, weekend, or holiday (see earlier discussions of this in the topic "Hemocue machine"). Alternatively, you can have your doctor issue a standing order for you to be tested for hemoconcentration at the nearest blood testing facility to where you live whenever you don't feel well. However, the downside of that route is that many such facilities are not open at night or on weekends and holidays, and besides they take many hours to give you the result.

Hi We do you get a Hemocue machine and does insurance cover it? I have had several experience were my blood pressure is border line low and I am not feeling the best, but Don't going in unless I am having other symptoms beside being tired. I would like to be able to check at home.

I believe that the Hemocue Hb201+ analyzer is still not FDA-approved for patient use, so insurance companies generally will not cover the cost, and the company which makes it will only sell it to medical professionals. Therefore, you will have to decide whether the convenience and peace of mind it will deliver to you is worth the (relatively modest) cost. (The alternative is to run to the hospital or a clinic or laboratory every time you don't feel well, and then waiting hours for the test result.) A company like CLIAwaived sells it over the Internet and doesn’t ask whether the customer is, or is not, a medical professional, see _www.cliawaived.com_. Moreover, the price they are currently advertising in their website is really low ($499) relative to what the Hemocue company charges, and it even includes 100 free cuvettes! You’ll only need to buy separately (and from any supplier) the lancets — go for the 23-gauge needles, not the ultra-thin ones sold to diabetics — alcohol prep pads, and gauze pads. Make sure you read the instructions on how to prick yourself correctly, namely, massage the finger to obtain blood flow, but taking care not to squeeze too hard at or around the fingertip site. (That’s why it’s best to use the bigger needles — to get a good drop of blood without having to do much squeezing.) Start out by measuring your blood every day at the same hour when you feel normal, that way you’ll know when you are getting an abnormal reading. And keep a log of all your readings to share with your doctors -- or to show to the emergency room staff upon arrival. It will greatly speed up your admission and treatment if you can show them that you are, in fact, hemoconcentrated.

Thank you for the information. Also my Doctor and I were having an interesting discussion. She stated that she assumed the IVIG was a life long treatment and was wondering if any one has tried going off it once they were stable. Any insights?

I think coming off the IVIG would take a very brave person. Arturo do you know how many people are now being treated with IVIG and how long they have been being treated for without having attacks?

Kevin, To my knowledge, we have 33 adults plus 4 children in our community who are receiving IVIG on a regular basis, all but one of whom -- an adult -- have reported having no more episodes. The great majority have been receiving IVIG since 2010-2012. One other adult (#34) was on an IVIG therapy for several years but, lamentably, he had renewed episodes and died of complications from one of them in early 2012. And to Rita (Ritz's) question, no, I don't know of anyone who has decided, or who has been forced against their will, to stop their IVIG treatments.

I recently started regular IVIG infusions(Previgin-70 grams) in June. Three months into the treatments and I have had no noticeable side effects other than a dull headache and some tiredness, which I contribute to the Benadryl. Last month I had a cold (usual trigger) and did not suffer any attack.

Thanks Arturo Those statistics seem good so far.

Thanks everyone, I just thought it was an interesting question. I am not brave enough to stop treatment to see what happens

I started a new job in June and because of this and the fact that all had been good for 12 months I missed 2 monthly treatments. 1 week after missing the 2nd appointment I had an episode that put me in hospital. Back on the IVIG. Wont be missing any more treatments.