Positive News!

[LMali]

Probably like many people, I turn to this forum when I am struggling with my PMR or feeling down, but this can give the impression that nobody gets better because people stop posting when they are fine! So I thought I would update on my recent post when I said that, with a great deal of fear and trepidation, I started taking Methotrexate. This after four years on Pred being unable to get below 5 mg. I was so scared of all the side effects, particularly on liver function. I have been so good, not a drop of alcohol, not even a paracetamol when I came down with a cold. I didn't want to give my liver any extra work to do! I have take 4 doses so far and had two blood tests, including one today. I spoke to the rheumatology nurse and she said my test results were "lovely" - all within the normal range except ESR which is raised. I was so relieved and delighted. Whether or not it will get me off pred remains to be seen but at least it hasn't made things worse. NOT ONLY this nice blood test result, but I had a DXA scan prior to starting the Methotrexate and I got a letter from the hospital saying that my bone density had improved since the previous scan in 2021! I didn't even know that could happen! I thought the AA which I take was to stop it getting worse! Maybe it's a mistake?! Anyway, so things can get better!!!! There is hope for all of us long term sufferers!!

[DorsetLady PMRGCAuk volunteer]

Good news… and yes we often say the forum gives a false impression of people’s PMR/GCA… but that’s life 😊

[Gc2596]

That sounds excellent. Always good to hear when someone doing well. Gives hope to those struggling. In view of my decision yesterday, after weeks of deliberation, to take Alendronic Acid it gives me hope with your improved results.

[LMali in reply to Gc2596]

I don't know if I was just lucky with AA but I never had a side effect. But it's one of those things . . . you take it because doctor says it is good and will counteract bone thinning but you don't notice things like that on a day to day basis. So it was good to get a DXA scan that actually showed an improvement. I took AA from July 2020 to January 2024 when I stopped because I was having a tooth implant. I started again when I saw the rheumatologist a couple of months ago. I think it is okay to take a "holiday", especially if you have been taking it for ages. I can't remember all the details but the dentist said it was okay!! I hope you get on okay with it and that it protects your bones!!

[Gc2596 in reply to LMali]

Fingers crossed for you too.

[DorsetLady PMRGCAuk volunteer in reply to LMali]

I never had an issue either.

[Myfoe]

Good to hear you are making progress!! Slow and steady wins the PMR race… Take care of you