Dearest angels,
You know, you go along thinking, well I don't have an actual DIAGNOSIS of Sjogren's, so that is that. So I'll treat the symtoms, and that's enough, right?
And POW, I am NOW diagnosed with CVID, Common Variable Immune Deficiency. Who knew? Plus who knew that a Deficient Immune system goes along with autoimmune diseases (SICCA and IC are considered AI diseases for those with CVID).
Ok, the immunologist today recommended that I go on gamma globulin therapy, either monthly, for 4 hours, IV,(IVIG) or weekly, with self administered sub cutaneous injections of gamma globulin (SCIG). FOR THE REST OF MY LIFE.
Yes, I get to learn a whole NEW bunch of letters and stuff like that. sigh
No wonder, I have been sick for three weeks out of six for the past two years. I just put it all together. Well, I can be a slow learner!
I am stunned. I know how you must feel when Methotrexate or Plaquenil is recommended. Is this good? Will this help? Will it make me worse?
WHAT?
Irish has been a blessing to me, by the way. Her hubby has this diagnosis, and while sharing her issues, she has shared this too.
And that is how I KNEW anything. Bless you angels, for what you have given me.
I will keep you posted.
ALSO, since I have had the WORST possible side effects from drugs, (PN) and I have become allergic to drugs, and am really anxious about all this and will discuss it endlessly with my husband.
But life just keeps handing out the weirdest stuff. That's all I can say.
Hugs
Elaine
I hope you are alright...of course stunned.
I remember being stunned when Dr. was thinking MS. "Pick something else, I don't have time for that one." I told him without thinking.
On and on, up and down the roller coaster, the slow climb and then the 'free fall'.....
I am not sure how this just came to light for you?
A blessing to have Irish help you, she has touch me and many more than she could ever imagine.
Caroline I hope you and your dear husband can get out and spend some time away. I am planning the same. Just step out of "it" for awhile.
And bless you too Elaine. I know you have had a very rough ride for a long while now.
What ever you choose to do with this treatment, ( I profess that I do not understand any of the medical jargon ) sounds pretty grim tho' I am wishing you well, and that you can get some relief . a miracle would be welcome. Through all of this you have remained cheerful, very friendly and courageous, so if anyone can go for this Elaine, it is you!
Good luck , Dolly x
Dearest Elaine, Thank you for letting us know about your latest adventure. (misadventure?) You are an inspiration - really. Good thoughts and hugs are going your way.
Many good wishes, Trish
Thanks Quiet and Dolly,
Funny, but the actual 'condition' just means I get lots of infections. I who never got sick, just had 'conditions' like SICAA and CAD and PN.
The only thing that has me a bit off kilter is the treatment, which if it works, goes on and on forever. Another reason to be glad I'm already 71!
I assume it will work, but since it is a blood product, it seems scary. Well, actually I've had my share of bad reactions to 'drugs' so I guess I'm a bit 'spooked'.
I just need to absorb this into my mindset.
Nothing much is grim once you bend your mind around it, and actually not only am I a 'glass half full' type, my glass is crystal and half full of champagne. So I will manage this.
It does explain a LOT of my fatigue and illnesses.
Here is the Wikipedia list of symptoms:
Hypogammaglobulinemia: low levels of immunoglobulin G (IgG), immunoglobulin A (IgA) and/or immunoglobulin M (IgM).
Poor titer response to vaccination with polysaccharide and protein antigens (e.g. pneumococci, tetanus, and diphtheria).
Recurring infections involving the ears, eyes, sinuses, nose, bronchi, lungs, skin, GI tract, joints, bones, CNS, parotid glands, etc. These infections respond to antibiotics but recur upon discontinuation of the medications. Bronchiectasis can occur from severe and recurrent lung infections.
Viral infections that usually respond to antivirals.
Enlarged lymph nodes, Enlarged spleen.
Fatigue.
Abdominal pain, Bloating, Nausea, Vomiting, Diarrhea, Weight loss.
Malabsorption.
Helicobacter pylori, Giardiasis, Cryptosporidiosis, Small bowel bacterial overgrowth syndrome, etc.
Atrophic gastritis with pernicious anemia and achlorhydria.
Nodular lymphoid hyperplasia of the GI tract.
Villous atrophy of the small intestine, which can resemble celiac disease.
Inflammatory bowel disease.
Aphthous stomatitis.
Increased intestinal permeability.
Polyarthritis, or joint pain, spread across most joints, but specifically fingers, wrists, elbows, toes, ankles and knees. In some cases, Mycoplasma can be the cause.
Children may show a "failure to thrive" - they may be underweight and underdeveloped compared with "normal" peers.
Candida infection of the lungs.
Anxiety and depression, usually as a result of dealing with the other symptoms.[6]
Again, it was a shock, but I'm absorbing it, and have joined a forum for CVID. But this is really my main place and will always be!
Hugs
Elaine
Dear Elaine,
Im so sorry you have to add on another dx to your list... thats never fun is it? :(
having Ra i had to go on scry drugs but i must say they have been a huge blessing. i too am sentsitive to mos tmeds but i donthave bad side effects from the methotrexate or the humira.
i am praying that the meds they want you to take will do nothing but make you feel better!!!!
keep us posted
God bless
lori
Ok, 24 hours after the official diagnosis AND recommendation for IVIG, I do a bit of research.
And I find out that the annual cost for the only drug that is available (this is an "orphan condition" so drug companies aren't interested in it) IS: between $74,000 and $124,000 per year~
And my insurer doesn't cover it unless I get special permission, and then I AM RESPONSIBLE for 33% of the cost.
So just when I thought all I had to deal with was a new diagnosis and a lifetime of therapy, I find that I probably cannot afford this drug.
Well, I am doing research, and I guess there are some ways, dealing directly with the company that makes the drug, and other possibilities.
But right now I'm just feeling like I've had the old one-two punch!
How can something happen that I don't even know exists? Well I did sort of know after my system tested even worse last Fall, but I was really sort of in denial.
You guys are all great.
There are a couple of amazing forums for this condition (CVID) and I've been getting great information and support from people there.
You've all taught me well!
Hugs
To be continued.........
Elaine
Dear Elane, I've been on Ivigg for one year hopfully I will continue. I have felt so much better with these infusions. Right now I'm waiting for next years approval but i think it will go through. My Dr. told me when I started if medicare would not pay for it,,, they would try to figure something out. So may be you will have something like that happen.
I hope and pray that you can get the infusions and that they do as much for you as they do for me.
I too am extremely grateful to Irish for all the information she gave me.
This is a wonderfull place to find good info.
mebog
Caroline, Do not give up yet regarding the financial issues. Go to http://www.primaryimmune.com This will give you some info that you will find interesting. They also have some areas regarding the financial aspects of dealing with the IVIG.
I know that my immunologist finds ways to get IVIG paid for many of his patients. If you are lucky, the financial department at your immunologists will help with this issue. There are many ways that they can help. If you can get the order approved for this then the 33% is what will need to be covered.
Hubby and I have Medicare and because we we already on the Medicare it was covered by the Medicare and then rolled over to our secondary insurance carrier. Medicare doesn't pay that much. We have never had to pay anything. I get 80 grams of Privigen once a month and it takes close to 6 hours. My hubby is getting 40 grams of Privigen and he gets done long before I do.
Also, find out what product the doc wants you to get and have them call the manufacturer. There are many ways to get this covered and the approval is not always as hard as you think. It depends on how they code it and how hard they fight with Medicare.I am surprised that you are not on the list for acceptance regarding the IVIG since you have the CVIG. THere are so many patients at my clinic who have this and I have never heard of them having a problem with approval to receive IVUG.
Hang in there. Where there is a will there is a way. Do not be discouraged about taking this IVIG for the rest of your life. I have been at it for 6 1/2 years and will get it until it doesn't get paid for or I become unable to receive it, or I find that it is prudent to quit taking it. I will not be selfish and take it until I am on my death bed. lol Irish
Oh, how lovely, typed with dripping sarcasm.
I'm so sorry this has hit you - I presume with treatment you'll feel a lot better and will be able to fight off whatever germs are floating around. I wonder too if it will help with the dryness too?
I hope you get the help you need financially to pay for this too.
Oh Elaine,
I am so sorry to hear all of this. I am glad there are folks on here who can specifically help with this. Also, you might check with a source I recently came across, www.needymeds.com
I don't know if immunoglobulins can be covered through their program or not? I spent quite awhile on a great CVID forum also. I know I have the IgA Deficiency and had immunoglobulin therapy
suggested to me back in 1989. But I was already (I now know..wrongly) being treated for Hepatitis C (which was really Sjogrens). I was being treated with a heavy duty cancer drug & did not want to think about immunoglobulin therapy at the same time. I have never seen an Immunologist since I was 14 and had my lung removed...too chicken, I think.
I am sure you are feeling overwhelmed and as my English friends say, "Gob-smacked". Like any of these diagnoses, it will take some time to process it and research it. You are getting good advice here & I am sure from the CVID forum.
I am sure you must feel like the little inflatable Bo Bo the Clown my kids used to punch...but BoBo always popped back up, and I know you will too!
Thinking of you.
SjoDry
Elaine,
I was also diagnosed with CVID many years ago (it was my first diagnosis)...due to IgG subclass deficiencies. I received IVIG for 9 years. As long as you have documented labs to confirm the diagnosis you should not have a problem getting approved. I will say that even though I had labs, they insurance company would only approve for 3 months at a time and repeat labs would have to be drawn for subsequent approvals. After a while, it went to 6 month intervals.
The cost is going to be on the upper end of what you found. It ran about $10,000 to $12,000 per dose (usually every 3-4 weeks). Due to the nature of this blood product it is usually in short supply, driving the cost up. Either way, your insurance company should provide a 'plan' to include out patient cost(if any) before you start...when approval is made.
The doctor's office likely has much experience in getting this approved so what to see what they say before getting discouraged. they know all the tricks about getting full coverage of treatments like this.
Dearest Angels,
So much support and care, and great information.
It turns out that since I'm on Medicare, and Part D for RX, I will go into and out of the donut hole very fast.
That means that my out of pocket for RX will cap at about $5K, and then I pay 5% of the cost after that. I actually have some RXs that will cost more, at least doing the numbers with AARP's donut hole calculator.
AARP has a very comprehensive approach, knowing where you live an what your plan is, then what drugs exactly It only calculates monthly purchases at a pharmacy, so my costs may be a bit less through mail order. But I will still have to pay out until I've spent myself out of the donut hole, so it's the same money, only maybe a bit slower.
I haven't seen the Specialist Immunologist yet.
More later
Elaine
I know my Mom had AARP Supplemental and it was a bit over $3000/yr.
Is that something you would benefit from? I really am not up on this...sorry.
Elaine,
I was on Medicare when I was getting IVIG and it was NOT billed as an Rx. It was under the medical side (part B), not a prescription medication. The SCIG may be different, but as afar as I know, it's a 'medical' treatment, not a medication also.
Wow, curiouser and curiouser, as Alice said, in wonderland.
So maybe it isn't a drug, it's a medical treatment? Well it isn't a drug, of course, it's actually putting other people's immune factors into your own blood. It takes 1000 blood donations to make one dose of the immune factors, which is why it is so expensive.
And I'm looking the SCIV, or subq, which is self administration, weekly, at home, rather than monthly in an infusion center.
I am just going to take this one step at a time, for sure.
The nice thing is that the horrid upper and lower respiratory infection which has made me so miserable since March 10, is finally clearing up and I feel half way human. My ears are blocked, so I'm deafer than usual, but that's bearable.
I feel like I've had a crash course in a new condition!
This is for those of you who have experience with this.
The factors I haven't given values for are in the normal range.
G 328 (range 588-1573)
M 21 (range 57-237)
G Subclass total 402 (range 767-1590)
G Subclass 1 198 (range 341-894)
Subclass 2 124 (range 171-632)
Subclass 3 18.1 (range 18.4-106)
The SAGA continues. But it's nice to have some relief from feeling so bad.
Hugs
Elaine
Caroline, Now you know why you have been sick so much. These immune system things can be so low and we can have just sort of run of the mill infections---or so the doctors think. We don't realize what is wrong because we get sick slowly much of the time and just get used to having so many URI' s.
You are right to just hang in there and take one step at a time. With me I was put on the IVIG for my myasthenia gravis instead of the usual Imuran because I had such low t-cells. I could not take the Imuran at that time because they knew I would be having really bad infections from the immune suppressant. We just never know what is going to hit us, do we. Can't get too overwrought because we can't change it and also, things just do turn out one way or another. Good luck, girl. IRish
I went down the rabbit hole of figuring out how to do IVIG treatments. Talk with your doctors office about the medical codes they are going to use.... If you can get this covered as a medical treatment, then under Medicare, you don't end up paying very much. I think out of pocket was somewhere in the range of $300 for three days of infusions.
An unfortunate thing is that Medicare has no "pre-approval" process, so you can't be sure of exactly how everything will work in terms of costs.
For some IVIG can be almost a miracle. Search for IVIG here, I got some great advice about the process when I asked about it last year.
I had one round of infusions, but had a reaction, and it won't work for me.
Thanks warmwaters!
I will be seeing the Immunologist who specializes in the condition which has IVIG treatments as the only treatment.
One thing I do know: I have two autoimmune conditions, SICCA (which is Sjogren's without the blood work factors) and Interstitial Cystitis.
IVIG doesn't address the symptoms of either autoimmune conditions.
So even if I do take IVIG, and it does 'work for me', I will still have the fatigue and pain of the conditions that aren't addressed with IVIG.
That is one reason I've waited so long to 'get on board' with this diagnosis (CVID) and treatment (IVIG).
I'm hoping to have the home infusions, which are self administered weekly.
I'm just taking this all one day at a time!
Hugs
Elaine
Quote from: Carolina on March 28, 2013, 06:54:30 PM
Wow, curiouser and curiouser, as Alice said, in wonderland.
... It takes 1000 blood donations to make one dose of the immune factors, which is why it is so expensive.
And I'm looking the SCIV, or subq, which is self administration, weekly, at home, rather than monthly in an infusion center.
I am just going to take this one step at a time, for sure.
The nice thing is that the horrid upper and lower respiratory infection which has made me so miserable since March 10, is finally clearing up and I feel half way human. My ears are blocked, so I'm deafer than usual, but that's bearable.
I feel like I've had a crash course in a new condition!
"I feel like I've had a crash course in a new condition!" Yes, I feel that I am frequently 'testing' my ability on the learning curve and picking the brain of DH and the two Drs. I trust. Who I also give information too.
Wrap my brain somewhat around one aspect ...and another one pops up.
I suspected you would opt for the treatment at home.
So happy to hear that you are feeling better, that you are feeling some relief....and I am hoping to hear more good news.
(At some point in the treatment do people undergoing this treatment become candidates to donate?...just curious)