Reaction to IV steroids-has anyone el... - Hughes Syndrome A...

Hughes Syndrome APS Forum

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Reaction to IV steroids-has anyone else reacted badly

designer16 profile image
6 Replies

I was on IV steroids for 5 days-followed w/ 2 weeks of oral steroids. It has made me worse. Has anyone else had a bad reaction.

Designer16

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Jane-Martin profile image
Jane-Martin

I cannot tolerate steroids at all. My consultant wants me to be on them daily. But even half a day makes me very low. I feel so ill when taking them. Last time I had them IV, I was ill for weeks. Why where you given them?

designer16 profile image
designer16 in reply to Jane-Martin

The neurologist put me on steriods because she said my spinal cord was inflamed-she said to think of your spinal cord as a tree on fire. Designer16

Jane-Martin profile image
Jane-Martin

Just seen your other post. You really need to get under the care of a doctor who is a specialist with APS. Where are you living?

designer16 profile image
designer16 in reply to Jane-Martin

I live in palo alto, California-USA. I have been very unlucky to find someone-they all say the know APS but my latest blood test have been neg. it is like they don't believe in professor Hughes.

Jane-Martin profile image
Jane-Martin

Hon, can you copy this last post as a new question (so everyone will see it) reference it to your original post. I hope that someone on the forum will know of a good specialist near you. Can't believe you are going through such a hard time. Sadly it happens to a lot of us. So we understand your frustrations. There is also an association americanaps.org who might know of a specialist close to you.

CanaryDiamond10 profile image
CanaryDiamond10

I think APsnotFab put it as clearly as a photo.

Inasmuch as finding a specialist in the States, there are many university hospitals around you. I would call the American Medical Association and ask them for a referral specifically to an APS specialist in your area. The university hospitals in this area (Chicago) have their own medical specialist referral departments, usually attached to what is called the Professional Staff office. They take care of the credentialling of the doctors as well as running them through and entering them in the National Practitioner Data Bank which reveals to the public any law suits won against a physician - in exchange for the sum of $6.00. All physicians that want to practice in the States are entered and checked through this so that bad doctors cannot hop from country to country or state to state. Try your university hospital doctors' referral service. If they don't have that department - operators can be very resourceful people. Ask the operator how you could find a specialist in that hospital. As a last resort - call the Office of the President as ask how one would be referred to a specialist in their system.

When I think of it. I bet you could pull most of that up on google. You just need to know your closest teaching hospital's name. I concur with Jane-Martin in referring you to the American APS Organization. Many, many resources to find resources.

Warm wishes and good luck.

Canary

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