Finally off Prednisolone and methotrexate

[Sorop]

I have had PMR /GCA for 9 years and started at 60mg of prednisolone and shortly after was prescribed Methotrexate. I am pleased to say that finally I have been able to taper off both and have not taken any for the last two months. I am aware that it could return but would like to share this so that people can take comfort in that there is always light at the end of the tunnel. I would like to thank everyone for their amazing support over all these years and wish you all well. x

[DorsetLady PMRGCAuk volunteer]

Good to hear… long may things stay as they are…😊

[PMRpro Ambassador]

Good news! Long may it last. And thank you for posting - don't leave altogether though,

[Sorop in reply to PMRpro]

Thank you and I will still read the posts. x

[PMRpro Ambassador in reply to Sorop]

And answer I hope!!!!!

[Sorop in reply to PMRpro]

If I think it will help certainly.

[Hidden]

Good morning Sorop🤗 what wonderful news to read. Well done!Hope you continue to regain strength and health 🌼

Very best wishes

x

[Sorop in reply to Hidden]

Thank you, I still have other health issues such as peripheral neuropathy but will still carry on fighting.

[Hidden in reply to Sorop]

🌼 never give up 🌼x

[123-go]

Welcome to Club Zero, Sorop! 2+ months for me too.

Although I understand that PMR can return I keep that thought tucked away confident that I’m armed with a good amount of knowledge should it rear its head in the future and I know I can always receive support here. As it can take up to a year for the body’s own adrenal function to do its thing I do admit to consciously avoid overdoing things…perhaps I’ve simply become lazy 🤔.

[Hidden in reply to 123-go]

123-go I love your name! Full of fun and energy.Very well done with your PMR and reaching zero.

Both encouraging posts from you and Sorop💐

I hope you continue to make steady progress.

x

[Sorop in reply to Hidden]

thank you and good luck on your journey too.

[HeronNS in reply to Sorop]

There must have been something in the air two months ago as my last pred dose was February 1st! Guess we are part of the PMR alumni now.👩‍🎓👨‍🎓

[Sorop in reply to HeronNS]

Well done too, love that analogy. x

[Suffererc in reply to HeronNS]

I took my last dose Feb 1st too. But I am not confident yet 😊

[Sorop in reply to Suffererc]

🤞 hope you continue to stay on your path to being well again. x

[Suffererc in reply to Sorop]

Thank you but it’s not pain free 😊

[HeronNS in reply to Suffererc]

Actually neither am I. Fingers are crossed.

[123-go in reply to Hidden]

Thank you.

😂😂 I aspire to being full of fun and energy.

[Sorop in reply to 123-go]

Thank you for that and echo what you say about the knowledge we have gained to give us reassurance for the future.

[offprenisone in reply to 123-go]

rest and enjoy the fact your free from predisone

[MrsNails in reply to 123-go]

That’s Fabulous News - really pleased for you 👏🏼

[123-go in reply to MrsNails]

Thank you, MrsN xx

[random901]

How wonderful! Gives me hope. Enjoy (today) wild and windy Wales 🐲

[Sorop in reply to random901]

yes very windy and wish the rain would go away too! x

[SheffieldJane]

Good to hear!

[Sharitone]

Thank you for the encouragement. That's wonderful!

[Sorop in reply to Sharitone]

Good luck on your journey, hang in there. x

[Longtimer]

Well done, you give us all hope. Keep well.

[Sorop in reply to Longtimer]

Thank you keep the faith. x

[MamaBeagle]

Well done👍

[Sammo47]

Great news! Gives me hope!

[RachelJDH]

That is wonderful news. You are right it does give us hope. X

[Richmond162]

That is good news for us suffers, light at the end of the tunnel! As we all know lapses can occur, but smashing woohoo!

[Thelmarina]

Great news - so pleased for you! ❤️

[Bella59]

Good news,well done.

[Ronnie101]

Congratulations! I hope I'm not speaking too soon, but I think I can also join the ranks of pmr/gca alumni, as I've not had a pred dose since the middle of March, after over 9 years. My consultant wants me to keep taking low dose methotrexate until August.

[PMRpro Ambassador in reply to Ronnie101]

Four weeks is early days - but great and long may it last.

[Ronnie101 in reply to PMRpro]

Yes, I was touching every piece of wood in sight!

[PMRpro Ambassador in reply to Ronnie101]

Haha!!!

[PMRCanada in reply to Ronnie101]

May I ask if you’ve been on MTX you’re whole journey along with the pred?

[Sorop in reply to PMRCanada]

I started the MTX 5 months after the Prednisolone.

[Ronnie101 in reply to PMRCanada]

I resisted it for a long time, because of the potential side effects, but I gave in about 2 years ago on a low dose (7,5 mg). The consultant since increased that to 10 mg. I have no idea if that's what helped me off pred, but he's convinced it has.

[Sorop in reply to Ronnie101]

Guess we will never know, but just relieved to be off it all.

[Marypatmorgan]

woo hoo! Congratulations. I am newly diagnosed and still reeling from having both PMR & GCA having never even having heard of them before. I feel like I’ve been given a life sentence despite being innocent 😏To hear this is indeed reassuring!

[Pixix]

Great news!

[Understanding22]

thank you for that as I was never sure about methotrexate which I have been on for a few years. It gives me hope.

[Sorop in reply to Understanding22]

I was asked to stay on the methotrexate for a while but I had other health issues that it maybe exacerbating so I came off it with no problems. Still have the other issues though. 🙁

[SudsSuds]

Well done, gives me hope.

[ValleysBoy]

Excellent news!!

[Avadip12]

wonderful to hear

[Nightingales]

Thanks for the encouraging post. I am approaching 8 years and need a “never give up” now and again. x

[Sorop in reply to Nightingales]

I too felt many a time that I would never be able to come of the medication so hang in there. x

[Sorop]

Thank you all for your posts and wish you all a speedy journey to Club zero.

[Suffererc]

well done 😊

[Uridge]

How interesting I am in a similar position just over 9 yrs and currently on 1mg of Pred planning to finish that in the next 6 weeks. Although I feel slightly anxious I am thrilled to have got where I am didn't think it was possible. I feel well and relieved I have other issues also but nothing too daunting Good Luck going forward. I also want to take the opportunity of Thanking everyone for their support I really could not have coped without all the helpful info so much appreciated. Yes there is light at the end of the tunnel. I wish everyone all the best. xx

[Sorop in reply to Uridge]

Good luck with your continuing progress.x

[PMRCanada]

This post and all of the “alumni” responses from those who have got off of pred altogether, (some with the assistance of MTX), gives me SO much hope and resilience to keep going. At times I question whether I’ll ever get off pred and whether the MTX is truly helping as it has been slow going. I shall endure.

May I ask how your adrenals are doing?

Thank you sharing your wonderful updates….they are truly inspirational.

[Musiclady18]

Good for you Sorop! Your comment provides such hope ! Good luck and keep us posted as to your journey! I am still on metho, not sure if at my next rheumy appt I can go off it as well?

[Sorop in reply to Musiclady18]

🤞 Hope you can finally get off MTX soon . Good luck. x

[Judywalks]

Well done Sorop. I was on Pred and Methotrexate for about 10 yrs and came off Pred about a yr ago and Methotrexate about 4 mths ago. Its been quite a journey as you will well understand . I too realise that it could return but I pray not.

I too am grateful for the support of this forum . For the first few yrs I felt so alone as nobody seemed to know much about this difficult time we go through with PMR/ GCA. and the associated side affects of medication so thank you everyone for your honesty and help.

I too would like to continue receiving the notifications and say to others “ take hope there is light at the end of the tunnel” .

[Sorop in reply to Judywalks]

That's very good news and I hope you continue to stay well and positive. x

[MrsNails]

That’s amazing news 👏🏼

Keep Well.

[LucieDoodle]

Brilliant news - congratulations! I too am off Pred but now taking MTX (steroids didn’t like me very much!). Fortunately MTX does seem to work very well for me & I feel soooo much better for taking it.

Take care & good luck x

[Sorop in reply to LucieDoodle]

Thank you, You too. x

[Bummed24]

I see I am four months late to respond, but am happy to hear the realistic genuine good news for you, and encouragement for the rest of us. I too, have been on the PMR/ GCA journey for the past eight months. What I am finding, is that my symptoms don't incrementally improve. They improve, and then return. One step forward, and two steps backwards. I suppose that's the nature of these autoimmune disorders.

I thought I would dance into my later years fit as a fiddle, and immune to most health issues. This has been sobering and humbling for me. I am still watching for the light at the end of the tunnel. 🙂