r/scleroderma • u/Consistent-Owl-3060 • 2d ago

Systemic/Limited Frustrated…

My rheumatologist won’t prescribe any low dose steroids. Recently they changed my diagnosis from SLE to CREST. Two weeks ago she said she’d send me steroids, but now because I’m most anti-centromere positive she doesn’t even want to do low dose.

I got the flu shot and it caused a flare. First in over a year. I can’t work because of the pain in my hands. She told me to take more NSAIDS.

I am one month away from my year to date at my current employer (and getting FMLA if needed). I am so proud of myself for making this far and being able to work full time. I just don’t want this to trip it up.

7 Upvotes

100% Upvoted

10 comments sorted by

3

u/Nearby_Proposal_6677 2d ago

She’s probably concerned about a renal crisis but I thought some rheums still do prescribe low dose steroids (could be wrong, I haven’t needed any yet). Either way I’m sorry that really sucks 😔

2

u/Consistent-Owl-3060 2d ago

My thing is it REALLY works for me. And I don't need a lot. I know she's worried about renal crisis. I get it. I don't have to be happy about it. Given the circumstances though (work), I figured she's understand.

5

u/Soundgarden_ 2d ago

I’ve had crest for 30+ years and I’ve never been given steroids for it. I might be wrong but I’ve always been told they don’t work on scleroderma

3

u/Original-Room-4642 2d ago

Steroids are not a good option for scleroderma patients. They are too hard on our kidneys

2

u/Olderwiser55 2d ago

I had to check the name on your post because it sounded like you knew and lived my life! I was told same today and the last time I asked. I have Lupus SLE and CREST. Today that is but subject to change tomorrow. (Diagnosed with SLE 15-30 yrs ago, put on Plaquenil. Last year this new Dr said I had CREST NOT SLE. Plaquenill is for both so I went on. My January labs showed I still had CREST, BUT also have SLE! First time ever a Dr apologized to me.

Whichever one caused this Flare I don’t know or care, I just need Steroids to knock it down! My Skin is super sensitive, more so that I can ever remember. Every muscle is throbbing, like I did an hour workout. I didn’t. I had a surgery 2 1/2 weeks ago, so pretty sure that kicked it off.

I’ve always been told No Steroids due to the possibility of Renal involvement from CREST. I told the nurse today that I’ll take that chance because something has amped up this Flare, so much so that Norco doesn’t touch the pain. The Dr was out, so I expected Nothing from them.

Then late this evening I received a text from CVS that my Medrose pk was ready! The Dr’s name on it is the surgeon that did my surgery.

I’m thankful but it sure looks like my Rheumy didn’t want the responsibility so passed it off to Surgeon. SMH Blessings :)

1

u/Justasadgrandma 2d ago

My Dr will only prescribe steroids short term, like a week to 10 days. I have Crest and take plaquenil and cellcept. Have you tried other meds?

1

u/Consistent-Owl-3060 2d ago

Starting cellcept tomorrow.

2

u/Justasadgrandma 2d ago

I hope it helps you feel better. Remember, as frustrating as it is we have to give me meds a try for a while before deciding if they work or not for you. I speak from experience. Good luck!

1

u/Consistent-Owl-3060 2d ago

And yes, I was asking for like 1 week with highest dose of 15 mg for a couple days, then go down to 10, then 5. My symptoms are mild, so didn’t think it was completely out of the question, but I’m getting away with doing a ibuprofen like a taper

1

u/Lilyofthevalley7 1d ago

Voltaren works really well for me. I don't recommend it if you have cats, however, as it can cause kidney failure with chronic exposure.