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Kathy D

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Posts posted by Kathy D

  1. Hi Louise,


    I have systemic scleroderma and gave birth last year to a beautiful baby.


    Please google your medicines and make sure none of them are classified as "D", as in methotrexate etc. Your doctor should know too. I was told "a" "b" and sometimes "c" rated medicines could work depending on your needs, but the "d" medicines are harmful to your baby and the "x" could end the pregnancy.


    You should also have a perientologist specializing in rheumatic disorders so they can make sure to treat things that may come up with scleroderma (vasculitis and blood flow to the uterus like I had etc).


    I almost felt lucky since I had sonograms every few weeks instead the normal once every few months :) It reassured me.


    I am thrilled you are expecting!

  2. I see my primary physician the end of this week for my overacrtive thyroid test and have high hopes that a treatment will help me. I know what it is like to live with systemic scleroderma (debilitating fatigue, weakness, flu like, never ending low grade fever, night sweats, dry mouth and eyes, joint pain and tender sausage fingers hands and feet not to mention Raynauds while living cold climate). I want to get back to that level of functioning even though it's a fraction of what I used to be.


    I gave birth to a miracle baby in 2011. Apparently autoimmune disease had damaged my ovaries then my medications left me completely barren, premature ovarian failure/premature menopause...........Only 18 years of marriage and we now have a beautiful baby!


    My pregnancy made me feel amazing for several months after birth, but I thought I was feeling anxious. I had switched from paxil to prozac during the pregnancy and was commited to riding out the side effects to keep my baby safe even though I have been clinically depressed for many years.


    My doctor (and I) assumed the "anxiety" was from being an older first time mother with chronic illness of a colic baby, so we increased the prozac dose. My anxiety became worse on the higher dose. We then tried new drugs like Savella and Cymbalta, in hopes of nixing depression, anxiety, and at the same time helping my scleroderma symptoms but I could not tolerate them and we ended up where I had success many years ago, on Paxil.


    Even now back on Paxil, the drug that was immensly helpful for me in the past, I was still trembling, trying to catch my breath often, making frequent urgent trips to the toilet and still had uncharacterisitc elevated blood pressure. My eyes have been constantly irritated day and night. The mint in toothpaste or the vents in automobile air conditioning hurt my eyes........... I have tried every lubricating eye drops on the market to no avail. We stayed on the anxiety path and my paxil was increased again two times. The first time increasing from 20 to 30mg exascerbated my symptoms. The second time I was instructed to increase 5 mg at a time slowly. Same thing happened, more trembling, higher blood pressure and I was still feeling weak and down in the dumps with nausea and no eye irritation relief.


    Of course, I have been on the internet. I noticed a similarity between thyroid disfunction and some of my complaints, the first place I looked was sclero.org. I remembered thyroid dysfunction after I was diagnosed years ago and read every subtitle of this entire site.


    I missed several appointements this summer due to wildfire evacuations (yes my house is still stands and is fine) so my first appt, with my rheumatologist this week I asked him to feel my thyroid. He examined it and added the test to my normal blood panel. It came back overactive.


    Cross your fingers for me!



  3. Hi TeaTime,


    I am sorry you might have scleroderma. From what I understand from being diagnosed myself is that testing positive for SCL-70 does not necessarily mean you have it, but that the autoimmune gene must be "triggered" or turned on to make one sick, and it's the clinical signs that confirm the diagnosis.


    Wishing you well,



  4. Thanks Shelly,


    I didn't mean to worry you. I should have added to my post that I also see a perinatologist that specializes in Rheumatic diseases. I showed him the rash and he said to mention it to my rheumatologist at my appt day after tomorrow, he was not alarmed in the least but called it "flaring a bit".


    So nice to hear from you!

  5. I learned of these two clinical signs while researching during my initial diagnosis. I have always had a red v shaped rash on my chest below my neck, but I remember testing negative for anti jo-1, or Dermatomyositis back then.


    I am now 8 months pregnant and have recently noticed increased muscle weakness and the rash on my chest is now twice as big and it now covers my shoulders and the back of my neck too.


    Does anyone else have this, or know if it is specific to Dermatomyositis? Any input is greatly appreciated.





  6. Susie Q,


    Here is an option for you, look into National Jewish Hospital in Denver Colorado. Dr. Aryeh Fischer is a Scleroderma Specialist there and the hospital is known as a leader in respiratory treatment. Also, about 5 miles from this hospital is the transplant hospital.......


    1-877-CALL NJH (877-225-5654)

  7. Oh Dear, I have changed too.


    My most noticeable is my face, always blue/purple bags under my eyes no matter how much I sleep, its so hard having people tell me "you look tired", and my eyes dry easily and turn red, so then they think I am upset and ask if I'm okay.


    The others are around my nostrils and my upper lip. My nose looks pinched around my outer nostrils, and my upper lip looks like a much older woman that partied very VERY hard all her life. Very difficult to cover with makeup.


    Tough at 39 years old, took a look at my drivers license picture from 29 years old, ack~!!

  8. We are all here for you darlin'




    Please keep us updated when you go back later this month, I KNOW you can do this :)


    Let yourself do what you feel like doing, I heard once that crying is essential for healing.



  9. Good for you standing up for yourself and your health Eos!!


    I suddenly had to find all new doctors when joining my husband's insurance plan after I was laid off and lost my own coverage. Guess what!?! I found great doctors that I trust much more than my other ones :rolleyes:


    Like you, I am also anti-ccp positive, but my doctors treat me accordingly despite being RF negative.


    I have severe Raynauds, no ulcers in 1.5 years but my rheumatologist still has me on a vasodiolator to prevent them. I hope you find a good rheumatologist that takes better care of you, I am guessing most of them won't let you go for as long as you did with the dead finger.


    Good luck!

  10. Hi Ladies,


    I hope all of you are getting along well :VeryHappy:


    Just a quick update.


    We saw the fertility specialist last week. I am "almost" in early menopause but we arent out of the game yet :emoticons-yes:

    He is doing genetic testing on me before we make any plans. It appears whatever lucky gene I have that caused sclero and ra might have affected my ovaries too. The gene may have either attacked my follicles and there arent any viable ones left, or attacked my follicles and altered the dna so I cannot produce a healthy child (likely to miscarry due to genetic abnormalities or be born with severe defects). We get the results in 2.5 weeks and I will let you know!


    I have quit several of my medications in anticipation of pregnancy, (yes, with blessings from my ALL my doctors). I will start a separate thread on that, doing quite well without them.


    Well wishes to all

  11. Hey Buttons! :bye:


    When is your ct scan? Please update us :rolleyes:


    I am sorry you have to deal with all this :sick2: hoping they can fix it after scanning you. I would lean towards getting the dye injected so they can see things properly, but thats just me............


    Take good care

  12. I can't tell you how much you kind words meant to me <3 Thank you!


    I have an appt with a fertiltiy doctor next week and I will let you know how it goes. Shelly, I was not told of the methotrexate effect but have to tell you (I have become a mad scientist with pee on sticks, testing for menopause as well as ovulation) and I hope I am seeing a slight improvement, and praying its not my imagination.


    My heart and thoughts go out to all you dealing with different and varied sclero issues, I send cyber hugs and hope.



  13. With approval from my rheumatologist primary care physician, and specialist, to get pregnant, I stopped methotrexate in March in anticipation of trying to conceive in August - my dreams taken away too soon.


    At my pre-pregnancy visit my hormones came up in POST-menopausal range, or premature for my age. There is an association with autoimmune diseases and premature ovarian faiure, I doubt we will find the cause, as infertility is not covered under our insurance and is very expensive.





  14. Both my first tests exactly 51 weeks ago were normal, a year later they are not.


    The diastolic dysfunction is grade II. Guess this would add to my fatigue and help explain the severity.


    Seeing sclero specialist in 2 weeks and normal rheumatologist in 3 weeks, I will have to wait to see what they say and how to proceed.


    Feeling shocked.



  15. I received an early holiday gift from my father and his wife, a heated mattress pad for my cold bedroom, its heavenly :thank-you:


    I turn it for a on high for a few minutes while I get ready for bed. Then I get in bed with it on low for a few more minutes until my hands and feet warm up, what a difference its made for freezen hands and feet!



  16. Hi Ladies,


    The increased prednisone helped alot :emoticons-yes: . I can almost extend it all the way now and its not nearly as painful. I went to the hospital for MTX labs today, the clinician was able place the needle in my slightly bent arm with no problems. I will be stepping down a notch on the prednisone tomorrow.


    I still can't figure out what caused it, I know for sure its NOT from overuse :lol: Yes Shelly, its quite possible I did sleep on it wrong, I might need to set some boundries for my large puppy that sleeps with me at night, she was not a problem at 7 pounds but now she's over 50 pounds :emoticon-insomnia:


    Thank for your care and concern,



  17. Mando,


    I am so sorry you are suffering. Depression is one tough cookie that can have serious consequences, I am so proud that you are addressing it, as many times one cannot fight depression by themselves.


    I have been on antidepressants on and off for years. I have successfully taken prozac and paxil and they worked wonders for me. I did have a bad reaction to bupropion though. Lost my mind and turned into a monster for a few weeks til my husband and I figured it out. I am back on paxil, its a miracle for me. I would go ahead and try it, as my reaction is rare (and I have not had that with the other two brands), and I heard bupropion can have less side effects and less intense side effects than others.


    Good luck and let us know what you decide,



  18. Morning,


    My right elbow won't let me extend my arm. I can extend it almost 2/3 of the way and its painful and just won't go any further. Lol, I look silly walking around with it up, like I'm carrying an imaginary clutch or I am on the arm of an imaginary beau!


    Its frustrating, even though its been going on for a few days I still forget and reach to open doors, pet a dog, and all the other things we never think of that require extending your arm.


    I took some extra prednisone last night with minimal results, calling the rheumatologist when they open.

    What is this, the RA or the Sclero?


    Thanks and here's to a good week for all of us!