I think I’m in remission

[Rosina1871]

After nearly six years of pmr and then GCA, I’m down to 0.5mg of steroid a week. I’m feeling ok apart from arthritis which has been masked by the steroids. I hope I’m in remission and feeling cautiously positive . Fingers crossed . I’ve learned so much from this forum, far more than from my GP and rheumatologist. Thanks. Will still be logging into the forum on a regular basis.

[SnazzyD]

Looking good so far! Cautious positivity is a good move, 0.5mg is still something and can be enough to hold things at bay, albeit likely a low level of activity. Some uneventful months on zero will be even better. You’ve come a long way for sure and deserve a medal whatever.

[Rosina1871 in reply to SnazzyD]

Thanks Snazzy

[SheffieldJane]

This is sounding pretty positive. Fingers crossed 🤞 for you!

[Brooklyn747]

I sure hope you are nearly at the end of the road and sound the trumpets for a remission party. So hard to know definitely or not that your p.m.r. has burnt out, for your sake I hope so.Keep us all posted...Good luck.

[Angelsmummy]

Well done you,from a fellow GCA/ PMR sufferer!Really hope you have reached your “ end story” ,but remain cautious won’t you,give yourself a while before you have a “ leaving party” for this damn disease.Wishing you good luck and keep in touch ,we need happy endings on here!xxxx💐💐😜🎄

[agingfeminist]

slowly slowly...I do hope you are able to say goodbye to PMR soon. But a dose of 0.5mg or 1mg keeps my PMR under control..and it is such a low dose. Good luck...do share any good news.

[PMRpro Ambassador]

Great - though as Snazzy says, it is amazing how little can be holding inflammation at bay so give it several months on zero before really hanging out the bunting!!! Do hope you are right and a few months without pred is good for you - just don't be in denial if it does wave at you.

[Rosina1871 in reply to PMRpro]

Thanks for the advice. I’m approaching this with much caution and keeping a keen eye on any symptoms returning

[PMRpro Ambassador in reply to Rosina1871]

Definitely the way to go!!

[Bridekirk]

I am new here and newly diagnos3d, and its really good to hear some positive posts. I have been feeling really depressed and frustrated for so long before being diagnosed, and bow I have had the diagnosis O kind of feel even more down, but hearing some good outcomes has lifted me.

Hope all continues upwards for you and you get your full freedom back

[Rosina1871 in reply to Bridekirk]

I think we all felt the same as we began our PMR journey but as time goes by if you pace yourself and taper slowly , things get much easier. Good luck x

[Bridekirk in reply to Rosina1871]

Thanks for you supporting words 🙏

[PMRpro Ambassador in reply to Bridekirk]

The hardest time is before the diagnosis when you have no idea what it is and doctors can seem not to take you seriously. Once you know and the pred is working - of course always supposing your doctor gives you enough to start with and then allows you to taper slowly while listening to your body, things do improve loads. Stick with the forum and ask questions if you aren't sure about something.

And something positive you can do for yourself and take some control is to start to reduce the side effects of pred by cutting the carbs in your diet, especially processed foods and added sugar. This will help reduce the risk of weight gain and developing steroid induced diabetes - and carbs are inflammatory so for a lot of people it also helps with the PMR symptoms.

[Bridekirk in reply to PMRpro]

Great practical advice. Thanks !

[PMRpro Ambassador in reply to Bridekirk]

I think this forum majors in "Practical"!!!

[Angelsmummy in reply to Bridekirk]

Hi Bridekirk,be aware that the depression is part and parcel of the disease,I would say that most of us have felt it and still feel it at times.please don’t think you are alone in this.,It is early days for you,acceptance takes a while to come whilst trying to deal with symptoms,the drugs,etc.You WILL feel better in time,nobody can predict how and when but you will……Try and forget what you USED to be able to do,and focus on what you are ABLE to do.The family on here will help guide you through your journey,the ups and downs and the uncertainty it can bring.We are all here to share and help one another.Best Wishes to you,xxxx💐🎄😜

[Bridekirk in reply to Angelsmummy]

Thank you. Your words mean a lot xx

[proactive in reply to Bridekirk]

I was undiagnosed for many months before diagnosis as well and was starting to think "I don't want to live like this". Having Googled "What causes muscle weakness and pain?" and getting the 10 most common medical causes, it was actually quite a relief to get a PMR diagnosis - I took heart in the fact that it is manageable and not terminal.

I educated myself over the next few months and relied on this site and its advisors and members for solid advice and assistance.

You will feel better and to get your life back!

[Bridekirk in reply to proactive]

Exactly how I felt. I was really quit frightened to go see the GP but felt that ill I knew I had no choice.

Like you I initially felt euphoric almost an adrenalin, but it has been short lives, but talking and reading is helping Thank you