Steroids vs. Non-steroidal Immunosuppressants

[Albymom]

Hello

 

What are the practical pros and cons of long-term steroid therapy vs. taking an immunosuppressant such as Cellcept?

 

Our 10 yo PANS DD responds well to steroids, both IV Solumedrol (given when we receive IVIG treatment), and oral prednisone. She has been taking steroids since late October.

 

I love the steroids for clearly enabling her recovery, but I hate the steroids for what they are doing to her body (puffy face, weight gain, the potential for internal organ damage, etc).

 

I feel funny complaining about this. Just a few months ago, I would have killed for our daughter to be as lovely, normal and functional as she is today, but recently some kids at school made reference to her "chubby cheeks" and she is mortified.

Our doctors are PANS experts. When I voiced my concern, they've say they're more concerned that perhaps she may not be taking enough steroids to maintain a 100% baseline functionality. They have also mentioned that reducing steroids too soon may instigate a relapse.

 

The thought of increasing her steroid dosage terrifies me. The thought of a relapse terrifies me.

 

In the past they have mentioned switching her to a a steroidal immunosuppressant if the steroid side effects prove to be too great, hence my question as to the pros and cons of long-term steroid therapy vs. taking an immunosuppressant such as Cellcept.

 

Thanks

 

 

[dcmom]

I'm curious- who prescribes the steroids? My daughters Doctor is reluctant to give more than 1-2 rounds. Please pm me- thanks!

[cynditk]

Following... my son has been on low dose steroids for several years to help control his PANS. No one has ever mentioned NS immunosupressant, but he is also immune compromised and on replacement immuno globulin.

[PowPow]

My daughter has been on cellcept for two years. I cannot see any negative effect from it. However it does not do anything quick nor drastic for her symptoms. Of course like anything, it is hard to know what is what in terms of recovery. She has worsened when she us noncompliant,specifically with the cellcept. We use the brand name version at the recommendation of our pharmacist.

She has complained of some moderate stomach upset with doses lately, so she has just switched. to myfortic in the past few weeks.

She also gets monthly solumedrol and ivig, so i cannot attest to cellcept as monotherapy.

[pr40]

long term steroids have been used for a long time, like last 50 years or so. there should be a lot of data on them and long term effects. Are her checks going to stay puffy for ever? If not, it's just the selfimage which in the larger scheme of things is, well, . . .

Immunosuppressants are just too scary to me to consider them.

[Sirena]

Cellcept is pretty heavy duty. If the steroids are giving a puffy face, you may get some help by paying attention to diet and lowering salt intake (from my experience with Lupus). Also, if steroids help, often Aleve (Naproxen) also helps. Dosing aleve for kids is more difficult because pills are all 220mg, but you can get a liquid form ordered which allows correct dosing. I think I got it for our kiddo from Walgreens but I had to find out what size bottle it came in and then the doctor wrote for that size.