My insurance has approved me to get a hemocue machine, but now no one can find a company who provides one. Does anyone have information on where to buy this machine? Thank you.

Try this link: http://www.hemocue.com/international/Support_&_Service/Worldwide_Presence-1181.html Hemacue Inc. in Lake View, California Good luck!

Thank you!

I also found this group very helpful for the hemocue and supplies. http://www.cliawaived.com

What a wonderful thing! You'll finally be able to know when you are having an episode and when you are not -- without having to go somewhere to be tested and then having to wait many hours for the results. I believe that the Hemocue analyzer is still not FDA-approved for patient use, so the company will only sell it to medical professionals. However, a company like CLIAwaived doesn't ask whether the customer is, or is not, a medical professional. Moreover, the price they are currently advertising at the website that WazzaACT pointed out is really low, 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. Keep a log of all your readings.

Many thanks for this information. I would try to obtain more about Hemocue in France. Could you confirm if the "Analyseur HemoCue Hb 201" is the right machine ? Best wishes to all for 2013 !

It is the 201+ model, see the Disorder Details section in this website, under Diagnostic Tests. It is available in France via HemoCue France, 3 rue Louis Fournier, 77100 MEAUX, Tel : 01 60 44 05 05, and you will also need to purchase the Entreposage des boîtes de microcuvettes HemoCue® Hb 201. You may be able to purchase it directly or via your doctor or pharmacist -- or an Internet supplier. Bon chance!.

Many thanks Arturo ! I will come back later after having checked these informations with my doctor and/or my pharmacist and also my insurance.

My insurance did not cover the Hemocue but I decided that it was important that I knew my blood level in any case so I bought one. I am very glad I did because I am now quite confident I understand my normal range and more importantly if it is changing.

Have you had ant attacks since being on the IVIG Wazza?

No. Not any full blown attacks but I was concerned on one occasion and that is why I wanted to baseline my hemo levels. I am now confident I would be able to determine if my count is elevating.

Excellent approach, WazzaACT! We simply cannot go by how we feel. We must measure, or have a laboratory measure, our blood for hemoconcentration whenever we think that we are experiencing an episode of SCLS. When I had ever more frequent episodes of SCLS (during 2007-09), I became overconfident in my ability to tell when I was having one. However, because my symptoms started to change, or to dissipate, I began missing out on potentially serious episodes of SCLS -- and a couple of them were so severe that they nearly killed me. That's when one of my doctors came up with the brilliant idea of my getting and using a Hemocue device. (I didn't even know that such a portable device even existed!) He figured that if diabetics could spare their organs and limbs by measuring their sugar levels, SCLS patients could surely benefit from measuring their hemoglobin. The daily monitoring of my hemoglobin for many months before going on IVIG provided a treasure trove of clinical information about SCLS, including on what medications and in which dosages helped to lessen or abort the episodes. And once I went on a regimen of IVIG, I continued monitoring myself on a daily basis for many months, until it was clear from the readings that I was having no more episodes. That's how we knew that we were onto something really effective! Nowadays, whenever I don't feel quite right, because I'm having a cold or flu or stomach virus, I test myself with my HemoCue and I can determine instantly that no, I'm not having an episode of SCLS -- I'm just having a cold or flu or stomach virus. It's wonderful to know what is, and is not, happening inside your body!

hello all ! what a wonderfull idea !!! I am going to buy the hemocue 201+ ,I think ,I will be more confident with my body, I am going back to the hospital the 11th february for some exams and will ask to my doctor...... very good idea !!!!! thanks Arturo for your advices and to have created this forum. Anne laure.

Welcome to our community!

My insurance company initially approved a hemocue machine, but is now recending their approval. The powers that be are saying the machine can not be found for public use. I gave them the above listed web address, but they will not buy it from there or they will not let me buy it and reimburse me. My insurance company says that there is no benefit to having a hemocue machine, even after I gave them this website to read up on our disease. I am very frustrated with my insurance and this is not the only battle I have been fighting with them. The medical review team does not understand our rare disease. Paving the way is frustrating, so I want to thank you again Arturo for all you have done for us with SCLS. I will keep appealing and hopefully after my doctors office continues to charge Cigna ridiculous amounts for hemoglobin testing they will relent and see the benefit of having a hemocue machine at home.

I had a similar experience, actually, and it boils down to the fact that the HemoCue is not FDA authorized for home use -- it is meant for doctors, blood banks and emergency rooms -- so it doesn't have a proper identification number, and that all means that reimbursements are up to the insurance company's sole discretion. Now, to my knowledge I was THE first SCLS patient to use a HemoCue device for self-monitoring purposes, so I expected problems. To begin with, in those days (2009) it wasn't sold on the Internet, and it had to be ordered by one of my compassionate doctors, so he bought it and then I reimbursed him. But I had hoped that times would have changed since then, just as they have in terms of obtaining approval for a course of (expensive) IVIG therapy. The good thing is that now it IS more available, and the price has come down by almost half from the nearly $1,000 they charged backed then. This is largely because by now another company has invented a non-invasive device that allows blood banks and emergency rooms to read your Hgb count (and other things) just by touching one of your fingers. (Sorry, that one is really expensive and is hooked up to special monitors.) So it boils down to this: Do you want the peace of mind and convenience that comes from being able to test yourself at any time of the day or night, weekdays or holidays, at home or work or while traveling, to see if you are or are not having an episode? If the answer is Yes, then you may want to go ahead and just buy it with your own money. (They sell them on Amazon for $400!). Once you've paid for it, the supplies are a few hundred dollars per year on top of that. In my case, I could afford it but I would have bought it even if it meant not going out to fancy restaurants for a while, and it proved to be a life- and limb-saver -- until IVIG came along, that is.