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Roger
09-13-2012, 08:55 PM
The wife just turned me on to this site today! Have been looking through some of the posts! Seems like there are an awful lot of different drugs being prescribed for Lupus out there! But I do not see Prednisone mentioned as often as I thought I would! For me, it has been a lifesaver! But my situation is a little more complicated! Was hospitalized in 2002 for Pneumonia, but was diagnosed as severely diabetic, and as having Cold Agglutinin Hemolitic Anemia! I got very lucky, and had an old country doctor that recognized the symptoms, and got the right specialists involved just in time! Being a Vietnam Vet, the Diabetes got me into the VA medical system under the agent orange protocol in 2003! Right out of the gate, the primary doc asigned to me suspected Lupus to also be involved! She just did not bother to tell me she was testing for it before she resigned, nor did my second doc before she resigned! To make a much too long story short, I did not get the Lupus diagnosis until July of 2009! Seems, out of 5 ANA tests, number 5 was negative! My SMAB and Mitachondrial Antibody tests had been 100 times too high all along! I have the head of Rhumatology working with me at the local VA hospital! Test 6 (his)was positive! So at last I had a name to describe every symptom I am reading about here that I have been living with! Just went through a confirmation in the last 60 days! Since I was already on prednisone, he just added hydroxychloroquine! Last year, the Cold Agglutinin Disease started getting out of control, so my hemologist, and rheumatologist ran me through a 4 week course of Rituxan! I got almost 9 months of remission with the Cold Agglutinin Disease, but only 2 weeks for the Lupus! And when the Lupus came back, it came back 10 times worse! Some Luppies seem to have luck with it, but not for me!

This year has been a series of major changes on the Lupus front! I now appear to have become severely sun sensitive! Found out the hard way while out Halibut fishing! Wound up back in the hospital with an HCT of 13 an an RBC of 1.75 within 72 hours! Had Pluerisy for the fist provable time! Seems the Lupus likes to go after the lining around the lungs and heart! Fevers of 102, and wouldn't you know it, the Cold Agglutinins see it as a Viral infection, and go right after the red cells! Before, all I had to do was avoid being cold, and people with viruses and bacterial infections! Gee, aren't we lucky? Feels like half a dozen fillet knives in your ribs! At that point they added 200mg of Azathioprine to my daily meds! Does not seem to be of help with the Lupus, but may have created a break with the cold Agglutinin Disease! Monthly CBC and blood workup is next week, and we hope to confirm that at least! The "flares" are happening about every other day! One or two days into one , one or two days with it reduced!

I am wondering if anyone else out there has the combination of the Cold Agglutinin Hemolitic Anemia and Lupus! With or without the Diabetes! Warm Agglutinins and Lupus are very common, but not the cold version!The heavy amounts of Prednisone will probably have you drug induced diabetic anyway! I have only been able to find 2 case studies on the combination. One in Oklahoma, and one in Helsinky! Both are at similar stages to myself, so do not help with any prognosis! And both were women! Although both caught the interest of my team when I made them aware! The combination is at least 300 million to 1, so everybody is guessing! Including me! Any ideas, I am open! There is a mountain of information about Lupus out there, and I spend hours researching! You all need to do the same for yourselves! Sounds like a lot of you are not getting the real help you need!

I also am trying to get this sun thing figured out! I have 4 or 5 sunscreens on hand, and have ordered UV 50 shirts and a hat! Does the denim in the jeans protect? What about shoes? I have been a hunter and fisher my whole life! With my business gone, that is all I really have left and am looking for viable solutions!

Thanks, and good luck to all! Roger

steve.b
09-13-2012, 09:45 PM
hi roger, and welcome.

have you looked at this web site
http://www.coldagglutinindisease.org/

many of us are on prednisone (pred)
it is often referd to as steroids (as a general term)

sun sensativity is also common to many of us.
you become more sun sensitive as you take plaquenil.
(in australia they have sun sensativity warning on the bottle)

there is a dye that some members use
(sorry i cannot remember the name)
this dye increases the spf facter of your clothes.
it is good for about 15washes.
hopefully someone else will offer the name of it.

again welcome.

Roger
09-13-2012, 10:15 PM
Appreciate the input! Yes, I have been a member of the CAD group since 2002! Lots of good feed back there, and we share experiences with different treatments! The one thing I have not yet found with them, is someone with the Lupus also! The Lupus"flares" are causing Cold Agglutinin flares which is a deadly combination! I am also aware that the Plaquenil causes the sun trouble! I had always thought they refered to the vision side of it! Sunglasses are easy to wear! But in May this year I found out about the UV side of it and how Lupus interferes with the removal of the damaged cells that normal bodies handle! The Metformin and Glipizde for the Diabetes also cause sensitivity!

What I had not heard of was this dye you mentioned to increase the UV protection of the clothes! Hopefully someone has a name or website to work with, but we will start on that in the morning!

Thanks so much for the reply! Very good information! Roger

steve.b
09-13-2012, 11:20 PM
the product is called sunguard.

https://sunguardsunprotection.com/?ccUser=

i am not american..... so not sure where to buy it.
i think amazon, but expensive
i know on there web site.
i think through the big chain stores.

Phoenix2369
09-14-2012, 03:12 AM
Whoa. I've need some of that stuff. I didn't know there was a such a thing. Good call Steve!

On the other hand. I too now have to avoid the sun. If you're on metformin as well as the plaquenil the sun will definitely take a toll. I have someone spray netrogena 75 on me every half hour and then wear thin long sleeve shirts. Constantly covered and layered.

Being a hunter that wont help you because of the smell. Maybe a hat to keep the sun off your face and just long sleeves? You might have to adjust and just go when it's cooler seeing as pouring sweat will scare of your prey too. Deer are so finicky. Lol.

Fishing is completely do-able with sunscreen. Just can't over do it. The length of time may be something you need to play with. Ive went fishing a few times with success. I try to get there an hour before dawn and leave around 9 when the sun gets hot. Maybe that's an option?

Glad to have you. Make today a good day.

debbie-b
09-14-2012, 04:37 AM
The wife just turned me on to this site today! Have been looking through some of the posts! Seems like there are an awful lot of different drugs being prescribed for Lupus out there! But I do not see Prednisone mentioned as often as I thought I would! For me, it has been a lifesaver! But my situation is a little more complicated! Was hospitalized in 2002 for Pneumonia, but was diagnosed as severely diabetic, and as having Cold Agglutinin Hemolitic Anemia! I got very lucky, and had an old country doctor that recognized the symptoms, and got the right specialists involved just in time! Being a Vietnam Vet, the Diabetes got me into the VA medical system under the agent orange protocol in 2003! Right out of the gate, the primary doc asigned to me suspected Lupus to also be involved! She just did not bother to tell me she was testing for it before she resigned, nor did my second doc before she resigned! To make a much too long story short, I did not get the Lupus diagnosis until July of 2009! Seems, out of 5 ANA tests, number 5 was negative! My SMAB and Mitachondrial Antibody tests had been 100 times too high all along! I have the head of Rhumatology working with me at the local VA hospital! Test 6 (his)was positive! So at last I had a name to describe every symptom I am reading about here that I have been living with! Just went through a confirmation in the last 60 days! Since I was already on prednisone, he just added hydroxychloroquine! Last year, the Cold Agglutinin Disease started getting out of control, so my hemologist, and rheumatologist ran me through a 4 week course of Rituxan! I got almost 9 months of remission with the Cold Agglutinin Disease, but only 2 weeks for the Lupus! And when the Lupus came back, it came back 10 times worse! Some Luppies seem to have luck with it, but not for me!

This year has been a series of major changes on the Lupus front! I now appear to have become severely sun sensitive! Found out the hard way while out Halibut fishing! Wound up back in the hospital with an HCT of 13 an an RBC of 1.75 within 72 hours! Had Pluerisy for the fist provable time! Seems the Lupus likes to go after the lining around the lungs and heart! Fevers of 102, and wouldn't you know it, the Cold Agglutinins see it as a Viral infection, and go right after the red cells! Before, all I had to do was avoid being cold, and people with viruses and bacterial infections! Gee, aren't we lucky? Feels like half a dozen fillet knives in your ribs! At that point they added 200mg of Azathioprine to my daily meds! Does not seem to be of help with the Lupus, but may have created a break with the cold Agglutinin Disease! Monthly CBC and blood workup is next week, and we hope to confirm that at least! The "flares" are happening about every other day! One or two days into one , one or two days with it reduced!

I am wondering if anyone else out there has the combination of the Cold Agglutinin Hemolitic Anemia and Lupus! With or without the Diabetes! Warm Agglutinins and Lupus are very common, but not the cold version!The heavy amounts of Prednisone will probably have you drug induced diabetic anyway! I have only been able to find 2 case studies on the combination. One in Oklahoma, and one in Helsinky! Both are at similar stages to myself, so do not help with any prognosis! And both were women! Although both caught the interest of my team when I made them aware! The combination is at least 300 million to 1, so everybody is guessing! Including me! Any ideas, I am open! There is a mountain of information about Lupus out there, and I spend hours researching! You all need to do the same for yourselves! Sounds like a lot of you are not getting the real help you need!

I also am trying to get this sun thing figured out! I have 4 or 5 sunscreens on hand, and have ordered UV 50 shirts and a hat! Does the denim in the jeans protect? What about shoes? I have been a hunter and fisher my whole life! With my business gone, that is all I really have left and am looking for viable solutions!

Thanks, and good luck to all! Roger

Hi Roger,

Welcome to WHL.
I have never heard of CAH before, but I had Hemolytic Anemia in 1979, my Hemoglobin was at 2.6 and I was gravely ill and 5 months pregnant. I received 22 blood transfusions and a very high dose of steriods for about 6 months, which saved my live.
My rheumy thinks, that I have had Lupus back then. I was diagnosed with Lupus in 2006.

Debbie

tgal
09-14-2012, 10:53 AM
They are called Sun Protectant Dyes and are made by most of the companies that make them. RIT is a very popular brand with many different colors. I have found that, even with sun protective clothing purchased from the store I still have to stay covered in sunscreen. I personally found very little benefit in paying the extra money for the clothing (hat excluded). Like Debbie I have to keep it on constantly (applying over and over) outdoors and inside if I am in a store or office with florescent lighting. I have gotten to the point where I can't handle the heat either. I am in Texas so heat means 90-100 for months on end so it may not be as bad in places with lower temps

Like you I couldn't make it without my steroids! I know they are bad for me and I had a doc tell me that they will "make me feel good all the way to the grave" but without them this thing takes over.

Anyway, glad to have you with us! Welcome to the family!

Roger
09-14-2012, 11:06 AM
Reply to Debbie! Like lupus folks are called Luppies, us with CAD are called Caddies! I think that if they were checking your Hemoglobin, at least within the last 10 years, that the lab would have included an alert! Mine always comes through with "probable cold aggutinin present"! I know that Lupus also goes after the red cell components as well! I am sure I have had all of this going on since the mid 70's! Seemed to recover on my own when I was younger, even if it took a year! My understanding is that they didn't separate cold and warm agglutinins till the mid 90's! It is quite common for Lupus folks to have the warm variety, which also goes after the red cell components! Yours is the most dramatic case I have heard of to date! They have different ways of treating the warm variety, to include Splenectomy! Your Hemologist should pick up on that right away! I also hate the Prednisone! Am at 20mg right now, but we go up and down between 10 and 120mg, plus the transfusion! Sounds like you also have a good Rheumatologist! Treasure the good ones because not all are good! Good luck to you! Roger

Roger
09-14-2012, 11:36 AM
To Phoenix2369 Appreciate all of that! Have been trying different combinations on the boat with 50% success! Luckily the cockpit is covered! Found out that a straw hat is not enough! I am on 2500mg of Metformin, so you nailed that one as well! The VA just issued me a sunscreen called Vanicream SPF 35! It is odorless, and seems to not irritate! Am pinning my hopes on it for October and November! The Rhuematologist says SPF 35 is plenty adequate! We shall see! The new hat is SPF 50, so MAYBE! Thanks again! Roger

n.mac
09-14-2012, 01:26 PM
I get my protective clothing from either bass pro shops (columbia makes a line of fishing shirts) or on line (better prices) from duluth trading co.
Don't forget the water reflects sun up-so use sunscreen as well as a hat out on water!
35 was never enough for me but everybodys different.

By the way welcome! Niall

Roger
09-14-2012, 02:13 PM
To n.mac Thank you for your input on the clothing! The nearest Cabellas is 60 miles away, and with most apparrell being made overseas these days, we need to try things on! But I will check it out when I am down there next time!

Just bought 3 SPF 50 fishing shirts from www.aquadesign.com and really like them! Light weight and cool! They were on sale today again for $29.98! Worth every penny if you ask me! Thank you again! Roger

n.mac
09-14-2012, 06:47 PM
I know what you mean about trying on clothes-amazing what china considers x-large compared to us companies.
I buy most of my work clothes from either a co called gemplers or duluth trading. Both on-line but as I'm a repeat customer I know how thier sizing charts work so I rarely have a problem.
I'm lucky to have both a bass pro shop and a cabella close by.
I'm an avid fisherman- being from the midwest I have fished for every thing from bass to catfish to salmon-but never halibut. That most be quite the challange!

What part of the country are you from?

Roger
09-14-2012, 08:13 PM
To n.mac Bremerton WA! Fish the Straits of Juan De Fuca for Halibut, and Puget Sound for Salmon! Also live on a year round lake with Bass and Trout! Think I am going to try that Sunguard Wash In Protection next!

ItsLupus2007
09-15-2012, 10:34 AM
Hi Roger and Welcome!

I buy this product for me and hubby uses it to fish-he does not have SLE and does not use it hunting but I have noticed no smell from it as I have become very scent sensitive.I know how sensitive animals sense of smell is but it might be worth a try and will definitely help with the fishing.

http://www.neutrogena.com/product/sensitive+skin+sunblock+lotion+spf+60-.do

rob
09-15-2012, 11:19 AM
Hello Roger,

Welcome to WHL!

Rob

Roger
09-15-2012, 11:26 AM
To ItsLupus2007 Thank you for the input! My wife uses the same froduct in an SPF 45! I t does have a faint odor, but is probably 2nd best to the Vanicream 35, or a product called Eucerin SPF 30! Both of which are fragrance free! Am hoping they will be adequate in Oct and Nov when our UV index is lower! Thank you for the input! Roger

serand4
09-15-2012, 12:09 PM
I truly understand. I have Lupus and lgA deficincy which means if I take Lupus meds, I can get sick much more easily. And...since I have igA (blood disorder), I won't get well for weeks or months. Last year I was ill from September to Christmas Eve. Not a little sick, the kind where you order groceries because you can't stand up long enough to shop for them. It was horrible!

As far as SPF, I used to be a water baby. Now I get out of the shower and immediately spray 90 SPF all over my body and put 100 SPF on my face. I deal with Raynauds so I'm usually ghost white anyway but I feel that maybe not getting as much sun will lessen the effect of the Lupus.

Good luck. It's just such a difficult lot to deal with. I wish you the best!

debbie-b
09-15-2012, 02:15 PM
Reply to Debbie! Like lupus folks are called Luppies, us with CAD are called Caddies! I think that if they were checking your Hemoglobin, at least within the last 10 years, that the lab would have included an alert! Mine always comes through with "probable cold aggutinin present"! I know that Lupus also goes after the red cell components as well! I am sure I have had all of this going on since the mid 70's! Seemed to recover on my own when I was younger, even if it took a year! My understanding is that they didn't separate cold and warm agglutinins till the mid 90's! It is quite common for Lupus folks to have the warm variety, which also goes after the red cell components! Yours is the most dramatic case I have heard of to date! They have different ways of treating the warm variety, to include Splenectomy! Your Hemologist should pick up on that right away! I also hate the Prednisone! Am at 20mg right now, but we go up and down between 10 and 120mg, plus the transfusion! Sounds like you also have a good Rheumatologist! Treasure the good ones because not all are good! Good luck to you! Roger

Hi Roger,

The hemolytic anemia I had in 1979, was the only time, I have had problems with my hemoglobin. It has been fine for the 33 years.

Debbie