A three year journey to find the right medication

[Greencat96]

Hello everyone😊

I just wanted to share my experience of finding the right medication. Many time I have felt hopeless and despondent. Living every day with fatigue felt like I was carrying an elephant on my back. Washing my hair, getting dressed, doing the washing up, all felt like military operations that needed to be planned well in advance. I managed to carry on working because I can work from home, my employer is exceptionally supportive and thanks to being able to afford counselling every week.

But aside from work, my social life fell to zero and, as I live on my own it was really hard to maintain my mental health and avoid spiraling out into depression.

I first tried sulfasalzine that had horrendous side effect on my mood. I am quite a calm person but became so enraged I couldn't even speak. It stopped when I stopped the medication.

I stayed without medication for quite a long while because this experience had made me quite weary. However the pain and the fatigue were so hard to bear that last September I tried Hydroxychloroquine sulfate. It wasn't spectacular but did help in particular with the pain.

I reached a stage where I was willing to try anything as my life felt so miserable. 8 weeks ago I started taking Methotrexate and it has been life changing. No more pain and my level of energy is brilliant. I feel alive again. I am seeing my friends, I am making holiday plans, I wash my hair without having to think about it; I can't believe how good I feel.

I am very aware that I am fortunate as we all respond differently to medicines and as I am sure many of you still haven't found the right combination of drugs. I want to say to you; keep trying. It is absolutely worth it when you can get your life back.

Sending thoughts of encouragements to all the sufferers. This illness is awful and very few healthy people understand the burden of fatigue and chronic pain.

[Mmrr]

Absolutely wonderful that you have found the medication that works for you, transformational for your life.A good news post ❤

[Boxerlady]

Lovely post - thank you for sharing and long may it continue working for you!

[Oshgosh]

I’m pleased you have found the medication that suits you .

[Marionfromhappydays]

That's brilliant x

[Deeb1764]

So glad you found your drug and getting your life back on course xx

[springcross]

What a great post Greencat and I'm sure it will be encouraging for other sufferers. I hope you continue to do well. All the best. x

[Lolabridge]

So pleased to hear your good news and hope it will encourage others to persevere.

[quatjen]

Hi Greencat,

this is great to hear, I also had the same issue with sulfasalzine. I’ve been on hydrox from diagnosis, I opted for Lefludimide instead of Methotrexate, have been on this for 18 months and had imraldi added in 12 weeks ago, as Lefludimide wasn’t quite ticking all the boxes unfortunately. But now I want to shout out and say I’m feeling the same, pains gradually receding, joint swelling is improving and fatigue is so much better, can’t wait to see rheumatology in two weeks and tell them, only thing that’s a bit of a worry my white cells are much too low, so they have paused Lefludimide, fingers crossed it’s improving and hopefully may continue. Like you I’m 3 years down the line and good things are happening, I wish you well and hopefully it’s long lasting, take care, Jen.

[AgedCrone]

At last….somebody taking the time to writing an encouraging letter giving hope to those who haven’t yet found a drug that suits them.

Thank you GC96!

[janmary]

thanks for your ‘good news ‘ post!

[Haz58]

That's great to hear! 2 years on and trying a 4th med on top of the 3rd you have given me hope. Long may your life continue with feeling great! X🌹

[Greencat96 in reply to Haz58]

the very best of luck to you🤞Hang in there Haz58

[jojoishere]

What a positive post, so happy your getting your life back on track,🙂

[helixhelix]

Great to have a good news post. Especially about Methotrexate as so many people are afraid of it. Hope it just gets on getting better for you. Methotrexate is still working for me aster 13 years (with other drugs now too)

[stbernhard]

How very lovely for you!!! Thank you for posting this and long may your recovery work.It's such a beautiful thing to have your life under control again.

All the very best.

[WomanOfFaith]

thanks for sharing your experience and give us hope. Congratulations for your new you!

[Sheila_G]

This is a great post. Thank you. A lot of people will be heartened by your story. We have all been in a position where we feel all the things you felt and hoped for the right medication to come along. There is light at the end of the tunnel and people shouldn't despair. I am delighted for you. I was in a similar position and mxt has transformed my life too and 21 years on I am able to do most things on my own. I wish you continued progress on mxt.

[Kati66]

That’s great that you have finally found a combination of meds that really help you. 👍🏻👍🏻. I’ve only been diagnosed for 6 months so it’s nice to hear that you have begun to get your life back. Gives us newbies hope 🤞🏻🤞🏻