Newly diagnosed

[Joann63]

Hi all, i was diagnosed today with PMR, this is the 1st day of my journey into the unknown. Is there anyone who isn't on steroid treatment. I'm unable to have steroids and was wondering how the alternatives work. Thanks on advance

[piglette]

Why are you unable to have steroids if I can ask?

[Joann63 in reply to piglette]

I'm allergic to them. Both times I've been given steroids I've had a very bad reaction to them. They affect all the glands in my body

[SnazzyD in reply to Joann63]

Gosh, how do you mean? Can you explain what has happened in the past so that it helps with replies. What are the doctors proposing instead because you can’t leave it untreated?

[Joann63 in reply to SnazzyD]

It causes my glands to swell and I can't control my temperature. It's very scarey

[Joann63 in reply to Joann63]

I've not had my appointment with Consultant yet. I wanted advise off others who are in the same position as me. Everything you read states steroids are the given treatment, I was wondering what the alternative is

[WaltzG]

I have GCA and PMR can't tolerate steriods so on methotrexate and weekly actemra injections. The latter in the UK only allowed for 12 months so I don't know what happens after that (another 5 for me). But back to normal life at moment .....I wish you strength and luck

[Joann63 in reply to WaltzG]

Thanks for your reply makes me feel more positive.

[WaltzG in reply to Joann63]

It's a very scary time xxx

[PMRpro Ambassador]

There are no reliable alternatives that are approved for use for PMR in the UK. Methotrexate and leflunomide have some basis for use in REDUCING the dose of pred required but they rarely replace pred entirely. There is one person on the forum, Hosers2 who uses hydroxychloroquine as they had to stop steroids because of another condition thought to be due to pred and it is working for them:

healthunlocked.com/user/Hos...

Tocilizumab/Actemra does work for PMR but unfortunately it is not approved at all for PMR in the UK and only approved for relapsing GCA for a limited time of 12 months.

All you can do is try the alternatives and see if they work - but you will have to see a rheumatologist as they cannot be prescribed by GPs.

I had PMR for 5 years without pred - it was pretty foul and I ended up pretty much housebound. Then I was finally diagnosed and given pred - miracle in 6 hours! I was very lucky because I didn't develop GCA in that time - because then you need high dose pred immediately or risk total and irreversible loss of vision. There would be no guarantee that tocilizumab alone would work adequately because it often takes a few weeks to take effect so is used in combination with pred before tapering the pred quite rapidly.