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  1. Thread: Pneumocystis

    by Girly3800
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    0
    Views
    905

    Pneumocystis

    I am looking for experiences any of you may have had with pneumocystis. My husband is the one with GPA and was diagnosed last night with this pneumonia - after a several month buildup to a stay in...
  2. Thread: last mtx

    by Girly3800
    Replies
    22
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    12,967

    My husband found that Flexeril worked better than...

    My husband found that Flexeril worked better than gabapentin for his neuropathy. And it has no side effects for him.
  3. Replies
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    3,952

    You might also do an online search for Forteo...

    You might also do an online search for Forteo coupons - there are several available from the drug manufacturer to help pay the co pays.
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    My husband is in month 21 of Forteo and will quit...

    My husband is in month 21 of Forteo and will quit at 24 months. It was the treatment of choice when he developed spinal compression fractures. He ceased Fosomax when he developed sores in his mouth...
  5. Thread: stress

    by Girly3800
    Replies
    7
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    2,445

    Stress definitely exacerbates my husband's...

    Stress definitely exacerbates my husband's symptoms.
  6. Replies
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    A PET scan will 'light' up for an infection as...

    A PET scan will 'light' up for an infection as well. My husband had a PET scan and a large spot lit up in the upper lobe of his left lung. We all thought it would be cancer - in fact it was a...
  7. Replies
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    My husband had cataract surgery this year - no...

    My husband had cataract surgery this year - no change in meds for it. Is on 15 mg of MTX a week and 7.5 mg of prednisone. No issues.

    Aldena
  8. Replies
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    Both my husband and myself have had this test. ...

    Both my husband and myself have had this test. In my case it was to diagnose carpal tunnel syndrome - a pretty common use of the test. It was many, many years ago and I remember it being painful. ...
  9. Replies
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    Becky - typically when my husband is tapering he...

    Becky - typically when my husband is tapering he drops from 60 to 40 to 20 with two weeks in between. From 20 on down it is excruciatingly slow - reducing by 2.5 every two weeks until he gets to...
  10. Replies
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    8,879

    Becky - I know it isn't always possible to have...

    Becky - I know it isn't always possible to have someone with you all the time at appointments. I believe there are gaping holes in our health care system and having an advocacy mechanism in place is...
  11. Replies
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    8,879

    Becky - you can also check on drug interactions...

    Becky - you can also check on drug interactions online. Just look for one drug name with the other. i.e. prednisone with celebrex. Even though there may be undesirable interactions your physician...
  12. Replies
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    8,879

    Becky - you must be an active participant in your...

    Becky - you must be an active participant in your health care. If possible, I also recommend that you have someone you trust accompany you to all appointments and be versed in your symptoms and...
  13. Replies
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    My husband was on Fosomax for a couple of years...

    My husband was on Fosomax for a couple of years then it started causing sores in his mouth. After the fractures started he tried it again and within 3 weeks the sores were back.

    As I understand...
  14. Replies
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    21,406

    For whatever it's worth - after a series of...

    For whatever it's worth - after a series of compression fractures in his spine, my husband's rheumatologist prescribed him a drug called Forteo. It grows bones. Is approved by the FDA for a two...
  15. Replies
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    7,122

    My husband takes MTX as maintenance and 2 mg of...

    My husband takes MTX as maintenance and 2 mg of Folic acid a day. The MTX fatigues him for 3 days after taking it. Splitting the dose doesn't help much at this point, although at one point when on...
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    Well, for what it's worth my husband's blood...

    Well, for what it's worth my husband's blood pressure goes up and the neuropathy/neuritis (depends on the doctor what they call it) in his right foot starts acting up worse than usual. With him the...
  17. Thread: Methotrexate

    by Girly3800
    Replies
    8
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    2,252

    The rheumatologist would have been fine with a...

    The rheumatologist would have been fine with a beer or two - the pancreatitis was the stopper - I wouldn't wish that pain on anyone.
  18. Thread: Methotrexate

    by Girly3800
    Replies
    8
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    2,252

    We agree - as most of you know, this disease is...

    We agree - as most of you know, this disease is one of balancing treatment and trying not to screw up something else. His liver is good, quit drinking when he developed acute pancreatitis from the...
  19. Thread: Methotrexate

    by Girly3800
    Replies
    8
    Views
    2,252

    I can share my husband's experience. He was...

    I can share my husband's experience. He was taken off his MTX in preparation of lung surgery - ultimately he had an upper lobectomy - not Wegener's and not lung cancer - some bizarre bacterial...
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    In this case there are also frozen ice packs in...

    In this case there are also frozen ice packs in the cooler and they are always still frozen.
  21. Replies
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    9,641

    My husband has just gone through this evaluation...

    My husband has just gone through this evaluation process. He has compression fractures in his spine and something was definitely needed. After much analysis - Fosamax is not a good option - doesn't...
  22. Yep - my husband lost half a lung to bacterial...

    Yep - my husband lost half a lung to bacterial pneumonia - not related to WG (at least not directly). Took a long time after the lobectomy to correctly diagnosis the actinomycis.
  23. I concur. I also believe that the primary care...

    I concur. I also believe that the primary care provider is vital to the management of all the specialty doctors. I have believed that since my husband was diagnosed three years ago. I have added...
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    Thank you - that is one of the products I have...

    Thank you - that is one of the products I have been looking at. Glad to see someone I "know" uses it. I have Apple devices so the i versions would work for us. Having just spent an hour and a half...
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    Thank you. Yes, I drag all that stuff around...

    Thank you. Yes, I drag all that stuff around with me too. Don't quite use school folders but have filled many other types of folders. I tend to file chronologically and would also like a way to...
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