Medications

[Angellealea1]

Hi all, I'm just cautious, what meds have you used & have they worked, any symptoms reduced?

thanks

[whisperit]

Hello Angellealea1,

I was first diagnosed with heart failure, and treated with Beta blockers and ACE inhibitors. This did not improve my symptoms.

Then I was re-diagnosed with Interstitial Lung Disease and Undifferentiated Connective Tissue Disease. The treatment with hydroxychloroquine and prednisolone was very effective in clearing up my lung inflammation.

However, I have subsequently developed further problems, including adrenal insufficiency caused by long term steroid use, so there's no happy ending yet! x

[Joy_1 in reply to whisperit]

Hi Whisperit

Looks like we are in a similar boat with UCTD and ILD.

If you don't mind me asking at what point did it become clear that you had adrenal insufficiency? How long have you been on steroids for?

My tipping point with Pred is 5.5mg.

Joy

[whisperit in reply to Joy_1]

Hello Joy,

I was only 20mg prednisolone from March to July and then started a quick taper. I got down to physiological levels of pred (about 7.5mg) after a year or so. For the whole of this time on pred, I had horrible symptoms of sweating, shaking and nausea, so I continued to taper until I finally reached 4mg about 6 months ago.

I had been suspecting adrenal suppression for long time, but my rheumy assured me this was not going to be a problem, and pointed to a random cortisol blood test that had been done one afternoon that showed "normal" levels.

This didn't satisfy me so I sent off for a home saliva test before Xmas, which showed very low cortisol levels in the mornings. This prompted an endocrinology referral and a synacthen test, which confirmed adrenal insufficiency about 6 weeks ago. x

[maye1 in reply to whisperit]

Hey Whisperit,

What treatment are you using for adrenals?

[whisperit in reply to maye1]

At present, the endo has prescribed no treatment at all - he just wanted me to stay on 4mg pred indefinitely. I must also keep an emergency supply of injectable hydrocortisone nearby.

There are various dietary supplements/diets that people recommend to support adrenal function, mostly stressing the importance of maintaining salt intake. I'm taking a few things, but nothing dramatic or magical.

As it happens, in the last few months, I have also developed myositis. So, pending further diagnostic tests, I will be changing my steroid regime anyway - watch this space! x

[maye1 in reply to whisperit]

Alright - I’ll keep an eye out. Thanks for sharing that.

[Joy_1]

Hi

Like Whisperit I have UCTD with lung involvement. Methotrexate has given me my life back. I also take HCQ and am playing the tapering game of getting off steroids.

Joy