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Anti-RNA Polymerase 1/111


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#1 Margaret

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Posted 30 November 2013 - 01:33 PM

Hi Everyone,

 

It's been a while since I've posted but have a question about this Anti-RNA Polymerase and can't find any up to date articles.  Gareth has been positive Anti-RNAP 1/111 since Nov 06.  They did 3 tests and all 3 were positive with the titres going up each time.  Last titre was 81(2009) but there are no articles that relate disease to titre numbers.  We have kept him on our primary insurance because of all his medical issues but that will end in May, when he turns 26 years old, and will be strictly Medical Access.  He has a rheumatology appointment in two weeks and I'm thinking of asking for another RNAP test to see if the titres are still going up, but I'm not sure what the justification would be for the asking?  Does that make sense?  I'm wondering if I should get all of them done again....ANA, Sjogren's, ARNP.....not knowing what the future holds for medical testing come May. 

 

By the way, he's been doing the IVIg infusions for 2 years now, every 4 weeks, and has only had pneumonia/ear/sinus infection once!!  He is still tired all the time and in chronic pain (legs) but no one seems to understand why.   The doctors just say "it's the autoimmune/connective tissue disease".  Very frustrating!!

 

Thanks for all your help,

Margaret

Mom to Gareth, 25 years old, DS-ASD



#2 judyt

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Posted 30 November 2013 - 03:19 PM

Hi Margaret,

 

Nice to hear from you again, it must be such a worry to have to try to cope with Insurance worries on top of everything else.   I could wax on lyrical about our system here, where that sort of thing is absent but I know it won't help you right now!!!

 

Good news that he has been avoiding serious infections for that long but as far as the fatigued/painful legs are concerned I know just what he is in on about.

 

In fact my poor husband got an earful only this morning because today I am so fed up with the whole shebang :crying: .   There is nothing the poor man can do about it, I know, but just sometimes one has had enough.  

 

I don't know how Gareth describes it to you but from my point of view I liken it to when a 'normal' person runs as far as they possibly can and gets so tired that it feels as though ones legs are going to collapse.   That is how I feel every time I stand up.   I always do get to where I need to go and actually it is not really a pain as such, just an overwhelming weakness.

 

Like you say, nobody can say why it happens - it just does.   I don't know whether I should tell you this!! but I am almost 70 now and I can remember the same feeling coming on when I was a teen.   Not all the time in those days, mostly just after I got out of bed in the morning, but I remember it as plainly as if it was yeserday.  

 

Not good news I guess but Gareth has loads of sympathy from me at least and a couple of big hugs :emoticon-hug: :emoticon-hug:

Judyt



#3 Joelf

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Posted 30 November 2013 - 11:32 PM

Hi Margaret,

 

It's always a pleasure to hear from you and Gareth and I'm so pleased that he's managed to avoid serious infections for two years; the IVIg infusions must be helping him a lot.

 

The Health system is different in the UK, so I can't advise you about his medical insurance; I have private dental insurance which seems to work well routinely until I need something doing which is very expensive and then I find I'm not covered for it!!  :rolleyes:  :P  In the beginning, I had all manner of blood tests for Scleroderma, but my consultants won't repeat the tests now, unless there's some specific reason for it; I only have a six weekly blood test now to check my medication. Perhaps you could explain the position to Gareth's rheumatologist on his next appointment and see what he advises.

 

I'm afraid I haven't found any more recent articles than 2010 Anti-PM/Scl-100 and anti-RNA-polymerase III antibodies in Scleroderma  and also I've included a link to an article from the Mayo Clinic about RNAP testing which I hope will be helpful to you.

 

I can see how frustrating it must be for you that Gareth's doctors can't be more specific about his symptoms; I can't help you with that, but what I can do is send a couple of huge :emoticon-hug: :emoticon-hug: to you both!

 

Kind regards,


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#4 Margaret

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Posted 01 December 2013 - 04:13 AM

Hi Jo ,

 

Thank you,  for finding the article from the Mayo clinic.  The article tells me more of what I wanted to know.  Yes, his 81 is a *strong positive*  BUT it goes on to state *the level of RNA polymerase 111 antibody does not indicate the severity of the disease in patients with SS*.   :emoticons-clap:    

 

Hugs to all of you,

Margaret       :emoticons-group-hug:



#5 Shelley Ensz

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Posted 02 December 2013 - 11:14 AM

Hi Margaret,

 

I just want to say "hi" to you and Gareth.  I am so happy that things have settled down for him since starting the IVIg a few years ago.

 

Do you know if the treatments will still be covered when he changes insurance?  The reason I ask is because I think they cost about $10,000 each.  Gene had to have some IVIg after his lung transplant and it nipped his chronic severe infections in the bud. If I recall correctly, they use the blood from about 10,000 people for every dose of IVIg, which is part of what makes it so costly.  Of course, I may be wrong, I often am, and if anyone can shed more light on this, it would be delightful.

 

:emoticons-group-hug:


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Shelley Ensz
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#6 Margaret

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Posted 10 December 2013 - 01:28 PM

Hi,   Everyone....well, after writing how well the IV Ig infusions have been for Gareth, we got the shock (no pun intended) of our lives on Monday.  Just after starting the second bottle of his monthly treatment, Gareth went into a severe allergic reaction and anaphalactic (sp) shock.  He started getting very upset/restless,  turning blue,  shaking intensely,  and blood pressure dropped to 48/24.  Needless to say,  it was hard watching the nurses and doctors kick into action.  They jammed in another IV in the opposite arm, yanked the IV Ig bottle off  (there went $10,000 down the drain) , shot him up with Benadryll straight into the IV  (he yelled at that....guess it burns pretty bad), gave steroids, and literally pushed saline into his veins.  Geesh!!  Scared the life out of me and he couldn't tell us what was going on!!  They got him stabilized and moved up to ICU, watched him for the night, and released him late this morning.  He does have some edema in his lungs due to the pushed fluids but they have him on Levaquin to prevent pneumonia.  We will talk with the Immunologist about our next course of action.  It may be something as simple as doping him up on more Benadryll/Zyrtec before starting.  Not sure but will keep all of you posted.  It's been a smooth ride for two years.....doctor said it's not unheard of, though, for someone to develop allergies to meds like this.

 

Take care, Everyone

Margaret



#7 Joelf

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Posted 10 December 2013 - 10:24 PM

Hi Margaret,

 

Goodness me, what a time you had; poor Gareth!!

 

It's such a shame, when the previous infusions had been successful and I do hope that they can prevent it happening again the next time Gareth has the IVIg treatment.

 

Here's an extra special :emoticon-hug: for him!!

 

Kind regards,


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#8 miocean

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Posted 11 December 2013 - 06:48 PM

Margaret,

That must have been some scare for all of you! I am glad he is back home and hope is is doing better. I feel so badly for his inability to communicate...all of us know we can come here to express our trials and frustrations and poor Gareth hasn't that outlet. 

 

Can you tell when Gareth is experiencing fear? I know the trauma I have suffered over the years through hospitals, drugs, and tests and how hard it is for me to even walk into a medical facility because of the memories it brings back up but at least I can say I am scared, or that I don't like this but know I have to go through it. I also have relaxation techniques I can use. He is quite the trooper to go through all of this.

 

Here's hoping to better results the next time. And 

 

:emoticon-hug:  :emoticon-hug:  :emoticon-hug: Hi Gareth!!  :emoticon-hug:  :emoticon-hug:  :emoticon-hug: 

 

miocean


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