fed up

[Shaza123]

feeling very low today,I’ve been trying really hard to taper my steroids,I was on 13 and a half mg and got down to 11 over 12 weeks but now all my pain in hips, shoulders and arms are back so struggling yet again. I spoke to my rheumatologist nurse last week and she told me that my methotrexate injections won’t kick in for at least another 6 weeks which I didn’t realise they took at least 12 weeks to take affect so now wishing I hadn’t tapered down the steroids . The weight I’ve gained is driving me nuts I look so big compared to last year and it’s so depressing. Sorry for the moan .

[PMRpro Ambassador]

At least your nurse appears to know more about the use of MTX than many doctors! However, it doesn;t work for everyone either so you still need to reduce in small steps and 13.5 to 11mg is quite a big step and maybe you would do bettwr going 1mg at a time/

And to help the weight gain - cut your carbs, especially processed ones. We talk about it a lot on the forum and it really does work for most.

[Shaza123 in reply to PMRpro]

sorry didn’t make my self clear I’ve been coming down half a tablet at a time

[PMRpro Ambassador in reply to Shaza123]

Half a tablet - or half a mg? What is a tablet - pred comes in 5, 2,5, 2 and 1mg depending on what sort you get. Once you are below 15mg, more than 1mg may be playing with fire.

[DorsetLady PMRGCAuk volunteer]

Could try going back to 13.5mg and see if that helps, and then wait until the MTX has kicked in before you try tapering Pred again..

[Louisa1840]

Moan away Shaza. That's what this site is for! It sounds as though you've overshot the dose that keeps your PMR under control? It is so tempting to RUSH but you will regret it in the end. I am with you about the weight gain - I am so sick of feeling and looking like a pregnant elephant! We are all with you. You're not in this alone.

Good luck for a btter day tomorrow!

[Shaza123 in reply to Louisa1840]

thank you so much for your reply Louisa 1840 your message cheered me up bless you💕

[Missus835]

Feeling low myself. Looking in the mirror is not the highlight of my day, because on the inside I still feel the same. Although I've only gained 10 pounds since Jan. 2022, I look like a baby Baluga (cutting carbs and all). Everything has shifted upward. Moonface, donut neck, skin is bumpy. Eyes look like...I dunno. Slits I guess. Little tiny eyes in this oh so round face. So I do feel you. We all have our good and bad days and this is the perfect place to vent. Hugs. xx

[Shaza123 in reply to Missus835]

thank you for your reply as much as I hate to think you feel the same as me it helps to know I’m not on my own x

[Rene20 in reply to Shaza123]

I have Had PMR for 12yrs nowDuring Covid I was fortunate enough to see rheumatologist 3 times in 12months.

I was on low pred3mg a day.he tried to det me off steroids and put me on Methotrexate horrible drug.

My PMR didnot respond well if at all.

Methotrexate is a cancer drug also for treatment of Rheumatoid Arthritis.

I have neither of these.

Eventually the rheumatologist decided I need to go back on low daily stereo 2and 1/2 mg a day as My PMR was flaring also I have adrenaline defence.

I had a flare again last October so increased pred to 15mg.

Now after 8months I am down to 5mg daily looking to reduce 4mg next week.

Keep taking he pills.

Luckily I have never developed a moon face or really weight gain.

However I have had steroid induced diabetes for the past 7years.

Managed by diet low carbs.

Anne.