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Margaret

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Posts posted by Margaret


  1. 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.

    Margaret

    :emoticons-group-hug:


  2. 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.

     

    Thanks,

    Margaret


  3. 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.

    Margaret


  4. 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.

    Margaret

    Mom to Gareth, 24 years old, DS/ASD


  5. 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.

    Margaret

    Mom to Gareth, 24 years old, DS/ASD


  6. 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.

    Margaret


  7. 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!!!

     

    Margaret


  8. 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.

     

    Margaret


  9. 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.

     

    Margaret


  10. 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. 

     

    Margaret


  11. <<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,

    Margaret


  12. 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.

     

    Margaret


  13. <<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: !!!

    Margaret


  14. 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.

    Margaret


  15. Hi Everyone,

     

    I think it's time to take Gareth to visit Dr Metzger, in Pittsburgh.  He hasn't been in 6 years and is having numerous medical issues.  When I went to the Sclero list for specialists, to get the phone number, etc,  he's not listed. Does anyone know if he's still taking sclero patients?  Has anyone been to see him lately?

     

    Thanks,

    Margaret


  16. Hi Fragiledancer ,

     

    My son, Gareth, 24 years old, has been receiving IV Ig infusions for a year now because he is deficient in IGg 2/4 --- the ones that fight bacterial infections. He also has MBL deficiency --- a component that fights bacterial infections, too. He goes every 4 weeks and they usually take 3 hrs. He does suffer from the headaches, and since last Aug, needs asthma meds for a week or two after because they can cause constriction of the lung bronchi. The good news is that he's only had one sinus/ear/pneumonia case in the past year and wasn't hospitalized for the pneumonia. They do work for him but take a physical toll on his body. He was diagnosed with UCTD, at age 18, due to esophageal dismotility, + ANA, + anti-RNA Polymerase 1/111, 20 # weight loss, extreme fatigue, and chostrochondritis.

     

    Take care, Everyone.

    Margaret


  17. Hi Barefut ,

     

    Thanks for the walk down memory lane!!! I can sympathize since I had two boys - less than two years apart. During Gareth's prime, between 10 and 18 years old, he and his brother would do the same. Even though Gareth is basically non-verbal, he's very high functioning and would usually be the instigator of fights. He knew what buttons to push to get Ryan riled up and yelling!!! I'd ask both if I should stop the car and let them out, Ryan would yell *no* and Gareth would sign *yes and point to Ryan* ....meaning let Ryan out!!!

     

    Take care, Everyone.

    Margaret


  18. Hi Everyone,

     

    Well, for what it's worth, Gareth's psychiatrist added another med (Wellbutrin), to his SSRI, due to the fact he's been slowly getting worse this past month. :( :( She said it's due to the holidays and seasonal depression. She told me that, unlike women, besides shutting down/withdrawal, men also show an increase in restlessness/irritability/anger issues......and, he sure has had those problems this past month. It's been the Dr Jekyll/Mr Hyde persona lately. :(

     

    Thank you, everyone, for all the insight to this. Like I have said before, I know that autoimmune issues can affect the brain, but it's helpful to read that others are struggling with this, too.

     

    Take care, Everyone,

    Margaret


  19. Hi Barefut ,

     

    Yes, Gareth has had horrible issues with major depression since diagnosed with scleroderma/UCTD. The hardest part for me is trying to decide if it's depression related or something else is going on. We were told to get the *blue bulbs* for ceiling lights and one of those fluorescent bulbs for by the table, to simulate sunshine. I don't think they help any!!! He's also taking an SSRI but we can't raise the dosage above 10 mg/day due to side affects.

     

    It's hard, Lady!!! I'll keep you in my thoughts.

     

    Take care, Everyone.

    Margaret

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