Currently on no medication!

[Greengodes]

Hello members. I'm 63 and in December 2013 was diagnosed with PMR. I was treated for it with Prednisolone. Luckily for me my recovery journey was quite uneventful. I suffered a few flares but eventually was clear by January 2018 however by December 2021 I was experiencing swelling and pain in both hands and very sore knees. I finally went to the GP, had a blood test and was diagnosed with PMR induced RA. I absolutely refused MTX so my only medication was Hydroxychloroquine. Moving forward to my next yearly check up and the consultant persuaded me to also start on MTX. I started the dreaded MTX medication in June 2023 and luckily for me I tolerated it very well with no side effects, however in September of this year my blood test threw up raised Liver ALT (302) so my GP advised me to stop with all RA medication until my ALT levels returned to normal which over the weeks (93, 40, 40, 21) it did.

The consultant via the GP advised me to restart on a lower dose of MTX once my bloods returned to normal which I did but once again my ALT levels started rising again and for the second time I was advised by my GP to cease with all my RA medication. My bloods are within normal range now but I haven't been able to get a Rheumy appointment until 12th December and I am not taking any RA medication at all. This is worrying me because within 3 weeks of not taking any RA medication following these concerning ALT readings I had mild pain in my thumbs and I do have concerns that I'll experience a flare.

My GP is trying everything to get my appointment brought forward and if she is unsuccessful she wants advice from the Rheumy department on how best she should treat me until I do eventually get to see my Rheumy.

Do any of you have any advise for me. Currently I feel well and am still walking my daily 2 miles.

Thank you all.

[Amnesiac3637]

Stick with your GP.’s advice. She has the situation in hand, is doing her best to get your appointment brought forward and will ask the rheumatology team on your behalf for advice if she can’t.

You’re best to continue to regularly take your pain medication if you’re on any, pace your activities while you're waiting and hope your consultant comes up with the solution to your problem when you see him/her.

[Deeb1764]

I was 12 weeks without medication and after first 5 days everything rolled in HARD and it’s been tough going. My GP did an expedited need letter to the Rheumy dept saying as depo-shot not worked and pred I needed urgent care. I was seen within 2 weeks. I started Abacept 2 weeks ago but I know it will take 8 weeks before I may see some relief.

I also called the Rheumy dept once letter sent 5 days later that the GP had sent it to check it had been received and they printed it and promised would be given to the consultant asap. I got a call 5 days later with the appointment.

I hope this helps. Chase hard and don’t give up keep calling the admin team of The Rheumy dept.

[MistyDay]

In the early days of RA , I did not want to take methotrexate.I found that naproxen took away the pain. It does not stop the progress of the disease but it helps with inflammation. If you can toleratec it see if you can have this prescribed by your GP. Take with food and ask for enteric coated tablets.Waiting lists on the nhs in the uk are horrendous now, for every medical consultation or surgery. I cannot see it improving. My RA consultant appointments were every 3 months. Now they are 9, including blood tests so hard to monitor what is going on.

[Darciedoodles]

hi Greengodes ,

I totally get where you are coming from I was the same I’m 61 and had to come off methotrexate due to platelets dropping too low

I was feeling amazing the first few weeks with no meds

I’ am now waiting on a change of meds my next rheumatologist apt is 3/12 but I’ve had a major flare up since 3/10. Been on 20mg prednisone that didn’t touch it , Naproxen every day and ended up with a steroid injection to try and help - my wrists thumbs elbows still inflamed and im in agony.

After several visits to Dr ( my surgery are amazing ) and contact with Rheumy nurse 3 times they wrote a letter to my Dr saying I will be put on Leflunomide after my rheumatologist on 3/12

I had to go to a private rheumatologist last week who agreed I needed to try Leflunomide - I’m now on day 4 and I feel worse ( apparently that can happen worse before better )

But although like you I didn’t want meds tried to be healthier, walk more 8 km daily and changed diet more green veg etc cut out sweet and processed food but I have had to admit I need the meds to stop it getting worse .

It’s hard to admit defeat but the pain is unbearable and not taking the meds def made mine worse I can’t open a bottle milk turn the tap on etc - I’m hoping these meds kick in soon

I’ve only had RA for 18 mths and only had one day flare up prior to these 6 wks

Keep your appointments and follow their advice

Good luck

[Chester1975]

Hi

Could the GP prescribe oral steroids again for you?

Sorry to hear about the issues with your levels.

Have you tried drinking a home made ginger and lemon shot every morning on an empty stomach. It can really help with inflammation and it will cleanse the liver too of any unwanted toxins which may be contributing to your blood readings.

☀️🥰