Autoimmune Disorders Community
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2150368 tn?1337151069

feeling helpless with vasculitis

I have been diagnosed with CNS vasculitis/Wegeners.  I am being treated by a rheumatologist with prednisone 50mg daily, protonix 40mg daily, metoprolol 25mg qd, vit D 3xweek, bactrim ss qd, lantus qd, and sliding scale regular insulin.  I have severe fatique, abdominal bloating upon any exercise/anxiety, my fasting blood glucose ranges from 170 to 425 and even on meds have borderline hypertension. I have also gained 60 lbs in 6 months.I feel my condition is getting worse instead of better.  What suggestions do you have for changes in treatment ? I am miserable and cannot function like this.
1 Responses
Avatar universal
I'm sorry to hear of your illness.  Unfortunately, the medications that you require for your condition can also cause (or at least add to) some of the symptoms you are having.  Prednisone can have some nasty side effects, especially at a relatively high dose that you're on.  It can definitely affect blood glucose levels, cause low energy and horrid weight gain.  Fortnately, many of these side effects go way pretty quickly once you're able to stop the meds.

I wasn't real familiar with your condition/s so I did a little research.  The information I found said that, while steroids such as prednisone, are typically the first line of defense - many times another immunosuppressent medication, such as Imuran or Methotrexate (or others), is quite often added.  Not only to help with the symptoms, etc., but by adding an immunosuppressent, you can sometimes reduce the amount o fprednisone you're having to take, thus reducing the side effects of the prednisone.

You may want to ask your rheumy about this and see what he/she says.  He/she may feel that the higher dose of prednisone alone is best for you, but it woudl be worth asking about it - especially since it is a good chance that the prednisone is at least adding to your misery.

I'm not sure how long ago you were diagnosed, but I also discovered that treatment for this can last 6-12 months, so the more you can reduce side effects from the treatment, the easier it's apt to be for you to be able to stick it out throughout the entire treatment scheduled.

I really hope you feel better soon!
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