Finally!

[AuthorJ]

I had been doing the dead slow near stop method of reducing prednisone for quite a while now. It was tough after I had gotten down to 1 mg but I am happy to report that that method worked for me finally. I had been diagnosed with PMR in Oct 2020 and in Oct 2024 I took my last Prednisone I am feeling good for these few weeks and wanted to share with everyone on this wonderful forum that DSNS has worked for me. I want to thank everyone who has helped me in this journey on this forum! You have been so supportive Feeling that I wasn’t alone made a huge difference in my journey. I thank you all! Your wisdom shared has been such a blessing to me. Thank you

[DorsetLady PMRGCAuk volunteer]

Good to hear…long may it continue. Hope you don’t need us again, but you know where we are, and please hang round and help others if you feel you can.

[AuthorJ in reply to DorsetLady]

Thank you Dorset Lady. I certainly will keep on keeping on with this forum.

[PMRpro Ambassador]

Pleased to hear that and long may it continue - but I always have to have a bit of cautionary advice: not entirely in the clear, PMR is a sneaky creature and it'll be a few months before you can be really confident it is gone. So don't be in denial if it tries to creep out of the woodwork!! What you do know though is that a very low dose of pred will keep it quiet!!

[AuthorJ in reply to PMRpro]

Yes, PMRPro. I realize this and I now know what it feels like, unlike the first four months in 2020. I do have to be cautious not to do too much. And with th holidays coming up. It was nice to put my medical bracelet in the drawer. Let’s hope it rusts in there from lack of use!

My rheumatologist is really good. I have been so fortunate to have an excellent one in NY and now in Maryland. I am blessed!

[PMRpro Ambassador in reply to AuthorJ]

Do remember that it can take up to a year for your adrenal function to get up to speed - that remains a risk a bit longer. Did your medical bracelet include that?

Enjoy the holidays and don't overdo it!!!

[AuthorJ in reply to PMRpro]

It did not say that. But my 2 sons phone numbers are my contacts on bracelet. I will let them know about this! Thank you so very much PMRPro!!!

[AuthorJ in reply to PMRpro]

Yes! I will put the bracket back on just in case

[Aqua47]

I’m glad to hear you’re doing well and off the pred. I’m in the US also, and my rheumatologist or any doctor has ever recommended that I get a bracelet. It does concern me though. Where did you get yours?

[AuthorJ in reply to Aqua47]

My doctor didn’t recommend it. My husband had one for his health issues and I thought it was a good idea so if I were injured the hospital people would know On front it said PMR Prednisone. On back my name and my sons’ phone numbers ( no names) I felt very safe knowing that if I had any issues they would be notified immediately ( my husband doesn’t always carry his phone that’s why my sons). I have a shared note in my phone with my sons where I have updates on dosage and doc names.

I got it from American Medical ID. Comes in stainless steel and silver.

Good quality products!

[Aqua47 in reply to AuthorJ]

Thanks! I’ll check on that.

[HeronNS in reply to Aqua47]

Universal Medical ID also has Canadian and UK sites. I'm in Canada and a medical ID was never recommended to me, got it myself. Once you've bought the bracelet (or necklace) there are no further fees. It comes with a free-forever web info page which you can keep updated, and the bracelet is also engraved with a PIN which a first reponder can use to access this info about you (medical conditions, med dosage, contact info, etc).

[Chavella]

Encouraging to hear, I have been on prednisone since 11/2020 and taking the slow journey down with the help of KEVZARA, down to 7mg. Curious about when I might notice adrenal activity lacking as I go down and eventually returning?

[PMRpro Ambassador in reply to Chavella]

Depends on the person - some feel it still in double figures, 7mg is a sticking point for many, most feel it 5mg and on and some never feel it at all!!

[Chavella]

thanks, I read the posts regularly and have not heard enough about it, now I understand why. Hopefully I too won’t feel too much change when going down. It’s been quite a journey. I think the KEVZARA is helping. I appreciate all of the support, advice and guidance here.

[PMRpro Ambassador in reply to Chavella]

I'm on Actemra which works on the same mechanism and it got me from 19 to 7mg pred but not further. It was obvious fairly quickly for me - within 3 or 4 months I was able to reduce pred steadily.

[DorsetLady PMRGCAuk volunteer in reply to Chavella]

This link from the FAQs gives info on adrenals-

healthunlocked.com/pmrgcauk...

[Angelsmummy]

Well done you,hope for us all.,may you continue to be well,good luck!xx🌼😜

[Tiggy70]

Well done so pleased for you🌸🌸