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Posts posted by Margaret

  1. Hi Miocean....I am glad that results came out fairly well.  How soon before finding out if you made the transplant list? 


    I remember that Gareth wasn't totally cleaned out for his colonoscopy  the last time, either, even though I assured the doctor he had taken all the prep meds and nothing but watery fluid was coming into the toilet.  Interesting about the motility factor for the colon.


    The Hydrogen Breath test is something I have never heard of.   Is that routine to r/o intestinal overgrowth?  That would help the autism community if it were.


    Take care, Everyone.


  2. 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


  3. 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:

  4. 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,


    Mom to Gareth, 25 years old, DS-ASD

  5. Hi Marsha ,


    My son,  Gareth, has been on Plaquenil for over 6 years now with no eye problems caused by it.  He has developed Sjogrens (dry eyes/dry mouth) even though he is on the Plaquenil and Plaquenil is suppose to be the treatment for Sjogren's.  After 3 months on the Plaquenil,  his esophagus was working again plus it loosened his chest cavity and vocal cords, too. His diagnosis started as sine scleroderma and was switched to UCTD.


    Take care,  Everyone.


    Mom to Gareth,  25 years old, DS/ASD

  6. Hi Zeen ,


    I am not the one to answer all your questions, but I do understand your frustration from the lack of a definitive diagnosis. 


    My son started his journey 11/2006, at the age of 18.  His senior year in HS was horrible.  His symptoms were all internal, + ANA, + anti-RNA Polymerase, major fatigue BUT no Raynaud's, no skin involvement, and no capillary changes.  Initially, they were talking sine Scleroderma but he ended up with the diagnosis of UCTD. 


    It sounds like just a generic "catch all" diagnosis, but it's not.  With so many of these autoimmune issues, one or many may overlap and getting a diagnosis may be very hard.  He was fortunate enough to respond well to Plaquenil and is doing failry well.  Over the last few years, though, he has slowly developed other issues....the Raynaud's  (mild) and Sjogren's.


    Perhaps, others will chime in with more definitive answers but many of us hear/feel your frustration.


    Take care, Everyone.


    Mom to Gareth,  DS/ASD

  7. Hi Clare....I also get the Optical migraines, with no pain.....knock on wood.  First one took me by surprise and scared me....it was totally psychedelic.  There's been flashing black/yellow ones like bumblebees and lightning ones with jagged lines.  Eye doctor agreed with primary care physician about them being migraines.  Make sure you get them checked out/documented just to be sure.


    Take care, Everyone.


  8. Hi Everyone,


    This conversation has me intrigued.  Gareth's Dad had the shinges vaccine when he turned 60 years old because his Dad had a severe case of them.  I am not 60 years old yet and don't *qualify* for the vaccine.  As soon as I turn 60, I will get it to protect myself & Gareth but I thought Gareth could/should get the vaccine, too, due to his immune issues.  Miocean leads me to believe that may not be the case.


    Just curious......any feedback would be appreciated.


    Thanks, Everyone.


  9. Hi Miocean ,


    I am happy for you !!  You deserve the best of the best !!  :emoticons-clap:


    Gareth had to switch many of his doctors, due to insurance issues, this spring.   So far, I like them all, especially his new Gastro doctor.  I've been complaining for over a year now, that Gareth would get up in the morning and act fine.  After he eats, he just shuts down and facial tics start.  A blood test showed that his blood sugar dropped a bit, instead of rising after his meals, so they told me it was Hypoglycemia. 


    Well, last Wednesday,  he had an Endoscopy by his new Gastro doctor.  She could see the esophageal spasms and had to stretch his lower 1/3 of the esophagus because it had become so constricted.  His *total stomach shows signs of inflammation* which she said would cause a nauseated, painful, or just chronic discomfort, depending on what he ate.  My goodness, how would I have known that?!?!?  He always *washes down* his meals....drinks so much milk, juice, or water.  Anyways,  we're still waiting to see if H Pylori is involved in his stomach, but she feels it's from the anti-inflammatory meds.


    Take care, Everyone.  I'm so glad you're all here to help me!!   :thank-you:


  10. Morning Miocean ,


    Thank you for that information.  I do not hear anything when he moves his knees, wrists, etc.   My concern began after reading it was associated with kidney failure and Gareth has the positive Anti-RNA Polymerase 1/111.


    You all are a wealth of information for me....it is so appreciated!!!  :you-rock:


    Take care, Everyone.



  11. Hi Everyone,


    Does anyone have these tendon rubs and,  if so, are they painful?  Gareth is constantly complaining about his legs, hands, and arms hurting but the doctor says it's not arthritis because there's never any inflammation/warmth in the joints.  Just curious....I had never heard of these before.




  12. Morning Miocean ,


    I am sorry to hear about another possible transplant for you.    :(    I will keep you in my thoughts.  Surprisingly, Gareth's issues appeared to be a more severe case of intrinsic asthma, of which the Singulair appears to be working well, for the time being.  :emoticons-yes:


    Take care, Everyone.


  13. Hi Shelley ,


    I decided to get off the Plaquenil topic and into the name game.  Gareth's old rheumatologist and primary care physician had him listed with UCTD.  I thought his new rheumatologist also felt the same.  When I took him to the new Pulmonary doctor (different medical group than the Rheuma) he has him listed as Mixed Connective TD.  Yesterday, while at the new Gastro doctor (same medical group as Rheuma), I noticed he is listed as Diffuse CTD.    I suppose it doesn't really matter as long as the symptoms are being treated?  Last night,  I tried to read and figure out the differences but my brain didn't get very far!!


    I did read where Sjogren's can cause havoc on the esophagus and stomach, too.  I didn't know that.  He's developed that over the past couple of years, too, on top of the positive blood work for Sclero and residual esophageal dysmotility.


    He is scheduled for an Endo and Colonoscopy in May.  It's been two years since the gallbladder surgery and the new Gastro doctor wants her own look at his insides. When she asked Gareth if he hurt, he did nod *yes* and pointed to his stomach.


    Take care, Everyone.


    Mom to Gareth, 24 years old, DS/ASD

  14. Hi Everyone,


    After two weeks on the Meloxicam and still hearing "hurt Mom"  " pain pills" , the new rheumatologist took him off it and put him back on Plaquenil every day. He also said to try the extra strenght tylenol, 3 times a day, instead of limiting him to 2 times day.  I am always concerned about his liver numbers jumping too high. 


    After the Rheumatologist visit , we were off to the new Pulmonary doctor  (all because of insurance change).  His lungs are stable - no interstitial progression -  which is weird since I never knew he had Interstitial lung issues?  His asthma has gotten worse over the past year, so now he's on Singulair every day, plus his inhaler. I was surprised to see "Mixed Connective tissue disease" on the Pul chart?!?!?  Is that really any different from Undifferentiated Connective TD ?   


    On Monday, we hit the new Gastro doctor.....having fun, yet?!?!? 


    Take care, Everyone.


    Mom to Gareth, 24 years old, DS/ASD

  15. Hi Everyone,


    Gareth met with the new Rheumatologist and he appeared very much aware of Gareth's issues.  I guess he actually read his files and  knew what was going on. He agreed with decreasing the Plaquenil and said to keep it at 3 days a week...for now. When I explained the on going pain for the past 8-9 moinths and no one finding the cause, he said there was no reason for him to be in pain constantly. He suggested he start on Meloxicam...an NSAID medication.  Give it once day for two weeks and report back. He is concerned about it upsetting his stomach but said to try it anyways.


    So...we will wait and see what the next 2 weeks bring as far as pain relief goes.


    Take care, Everyone.


  16. Hi Everyone,


    Kitty -  welcome to the forums and *thank you* for your input.  My son is special needs and doesn't communicate verbally,  so I come to this site to TRY and find out what's going on!!!  He started this journey 6 years ago and also receives IV Ig infusions (monthly) due to immune deficiencies.


    Removing the Plaquenil to 3 days a week hasn't take away the pain. Due to new insurance protocols in our state, we have had a month of switching doctors  (not all his doctors take the new insurance)  and he will now have a new Rheumatologist.  I also have an open invitation to Dr Medsgar's, a Scleroderma specialist, in Pittsburgh. 


    I will keep you all up to date on what the new doctor says/thinks.  I've come to realize that many of these may be overlapping issues and one doctor says Fibromyalgia while another is thinking Rheumatoid.....all on top of everything else he has, the UCTD and SICCA, and immune deficiencies.


    Take care, Everyone, and *Thank you*  for all the input!!!



  17. Hi Shelley,


    To be honest, I can't tell.  He's still in pain but I wouldn't say it's any better or worse.  Been researching doctor website; I know, wrong way to go, but I Googled *chronic pain in arms, legs, hips, lungs, and eyes*.   Guess what popped up repeatedly: Fibromyalgia.    :(  :angry:  


    We have an insurance mess right now to deal with since Pennsylvania is switching their Medicaid program around and Gareth's secondary insurance is through them.  We will have to find numerous new specialty doctors -- major bummer!!!  One of those will be a new rheumatologist -- second major bummer. 


    I did hear back from Dr Medsger's nurse and she said to call to schedule an appointment when we have things in order, insurance wise.


     I'll keep you all posted.


    Take care, Everyone.



  18. Hi Sweet,


    How are you doing?  You don't chime in very often...miss ya!!!


    I'm trying to get Gareth into Dr Medsger, but PA is switching insurances and it will be a while to do so.  I wanted the rheumatologist to raise his Plaquenil since he's showing + SSA, + SSB, and + Jo-1....all while being on the Plaquenil!!!  She says that since his ANA came back negative, his body might be reacting to the Plaquenil.  Muscle weakness/pain is listed as an adverse affect for it. This is a trial period...a wait and see what happens period...a *practicing* medicine period!!!.  :emoticon-dont-know:


    Take care, Everyone.



  19. Hi Everyone,


    Friday night, Gareth's primary care doctor (primary care physician) called to say he had a long discussion with my son's rheumatologist.  She wants him to decrease the Plaquenil to 3 days/week (M, W, F) instead of daily.  She feels the Plaquenil may be cause of his chronic pain since he's been on it for almost 6 years....muscles, joints, headaches, etc.  In the past, she said he would always have to remain on it to prevent the Sclero from coming back.


    So, has anyone else gone off Plaquenil and did your issues come back in full force?  I guess this is another one of those *wait and see* situations where they are *practicing* medicine.  :emoticon-dont-know:    I feel like I'm playing Russian roulette here with his body!!!


    Take care, Everyone. 



  20. <<maybe they haven't bothered to prove they are dry with a Schirmer's test.>>


    Hi Shelley,


    Gareth flunked the Schirmer's test a couple of years ago.  He goes in tomorrow, to the eye doctor, for his yearly exam.  Under Gareth's medical health history page, they have listed Hypothyroidism, CREST syndrome, Diffuse diseases of Connective tissue (???),  RNA-Polymerase 1/111 +,  ANA +, Restrictive lung disease, Dysphagia, GERD, and high IgA level.  This would be information put in by his rheumatologist, primary care physician, and cardiologist since they are all with the same medical group.  Another medical group handles all his immune deficiencies....Ig G 2/4 and MBL deficiency.


    Thanks, Lady     :thank-you:


    Take care, Everyone,


  21. Hi Virginia,


    Welcome to the forums and sorry to hear about your daughter's diagnosis at such a young age.  My son started down this autoimmune nightmare at the age of 18.  He's 24 now and I would have to say that the fatigue and pain are the constant stressful issues for both of us.  He was put on Plaquenil 6 months after diagnosis and his esophageal dysmotility and restrictive lung issues eased up. 


    Take care, Everyone.



  22. <<He explained that the terms are basically the same, but doctors often use SICCA to mean that the Sjogren's is secondary to another illness, and they use Sjogren's if it is the primary illness.>>


    So, the Sjogren's is caused by the UCTD (thus secondary) or the Sjogren's is the second(ary) autoimmune issue? :emoticon-dont-know:  :emoticon-dont-know:


     Either way, he was diagnosed with SICCA a couple of years ago, by his rheumatologist doctor.  She never told me that the two were interchangable and that there were other issues with SS that I never knew about.  I just (wrongly) assumed it was only the dry eyes and dry mouth.


    I'm sloooowwwlllyyy learning............ :emoticons-yes:


    Hugs back to ya, Lady......... and   :thank-you: !!!


  23. Hi Shelley,


    He's not listed under your expert panel anymore for PA, just a Dr. Sergio A. Jimenez, Jr., in Philly.  I may have to use him, though, because when I called Dr. Medsger's office, he's not taking new patients and Gareth would be considered a new patient since he hasn't seen him in five years.


    Gareth has had a couple of REALLY bad days, pain wise.  I Googled *does Sjogren's cause pain* this morning.  Oh,  my.....the articles that came up!!!    :(  What I don't understand is the lack of empathy by his current rheumatologist and internist.  He was diagnosed with SICCA several years ago and I read where the med of choice for Sjogren's Syndrome is Plaquenil.  Well, he's been on Plaquenil for almost 6 years now and still developed SICCA/SS.  By the way, are they the same SICCA and Sjogren's?  :emoticon-dont-know:   It's not just the fatigue, but the physical and neurological aspects of this that concern me.  So,  he had a  + ANA (speckled pattern) and + anti-RNA Polymerase 1/111  six years ago.  Now, he has a - ANA, but a + SSA, +SSB, and +Jo-1.  I don't understand all this!!! :emoticon-dont-know:


    Thanks for your help the other day....it's so much appreciated!!!   :emoticons-thankyou:

    Take care, Everyone.