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New RA diagnosis and tapering steroid treatment

Posted , 7 users are following.

anthony1801
anthony1801

Hi,

I've never joined one of these health sites, but felt I needed to to see what others have experienced in similar situation.....so for background my story is this.....

I have recently been diagnosed with 'inflammatory arthritis on the entheseal scale'-inflammatory arthritis in the connection of tendon and ligaments to bone. This is mostly around my pelvis and SI joint. I also have bursitis around my hips (mri confirms inflammation in the pelvis, hips and bursi) , some burning shoulder pain, heel pain (lots!) and more recently pain and some swelling in my hands.

I had I'm depo medrone that had some short lived effect but when my hands became painful I was started on oral prednisolone which I am still on a tapering dose.

My question to fellow RA patients is about the tapering dose of prednisolone......... I am a week into tapering down in 5mg intervals and again waking with back and heel pain. If anyone has taken tapering steroids, did you experience symptoms returning as you tapered down? I'd ask the Rheumatology nurse in our sos clinic but I don't want to become 'that moaning patient'....... I just want to keep moving, keep working and not let this rule me.........

(sorry for the ramble) Any advice folk?

Thanks

Anthony

0 likes, 14 replies

14 Replies

  • carol303055
    carol303055 anthony1801

    Posted

    Hi Anthony,

    Oh Yes!

    ?The maximum dose of prednisolone I've taken was 30mg and I've taken it for both my joints (if I've had to stop my other meds for whatever reason and for my chest). I've found I can reduce it by 5mg to about 20mg but then my wrists and ankles start to hurt. The last time I saw my consultant she suggested I was being a bit ambitious and to reduce if necessary as slowly as 1mg every 2 weeks. I've managed to get down to 12mg with few problems so far.   A final word, firstly you can "moan" as much as you like on here - many of us have a lot of questions and also get very 'fed up' - and secondly do use your expert nurses and doctors. I wish I'd used them more especially in the early days of my diagnosis instead of putting up with pain.  And, however good your GP is this really is specialised and much of it is outside their experience. Good luck. Carol

    • anthony1801
      anthony1801 carol303055

      Posted

      Hi Carol,

      Thanks for your reply. That's really interesting as my starting dose has been 20mg and is tapering off at 5mg intervals over a weekly time frame...... I am day 5 of my 15mg week and starting to be symptomatic again. The plan is to go down to nothing by the end of the month when I have a rheum nurse review and to start on methotrexate...... This course of pred was to give some relief and tide me over. With it being only towards the end of week 2 on it I was trying to avoid going back to clinic until I'm due-you're right though, I should use the specialist staff (just reluctant at times...... stubborn bloke syndrome 🤣wink.

      Thanks for your advice 😀

  • diane77471
    diane77471 anthony1801

    Posted

    Hi Anthony, I was on 3 rounds of prednisone when I became symptomatic back in November last year. I too felt increased pain when tapering down. I went on methatrexate in January and just kept getting worse. Rheumy then put me on Humira injections every 2 weeks with methatreate and after a month I had 75% improvement with pain and mobility. Meds are the key to this disease. I hope you also find relief soon. Oh, I also had cortisone shots to my wrist which helped immensely. Good luck and Carol, I always love and appreciate your responses. God bless all of you.
    • anthony1801
      anthony1801 diane77471

      Posted

      Hi Diane,

      Thanks for the reply...... Sorry to hear you had a few stalls before improvement. However, to know there might be a few along the way makes me feel it'll be OK to go back to the rhemy nurse and say that this hasn't improved things for long.

      I am hopeful that starting on methotrexate might be helpful..... at least for a while 👍

  • blair97497
    blair97497 anthony1801

    Posted

    Hi Anthony. Yes, I have tapered off prednisolone twice. Between my GP first getting high positive blood tests indicating RA, she sought more specialised advice and prescribed a tapering dose of prednisolone. So in the 6 weeks before I could see a rheumatologist for diagnosis, I had been on prednisolone 20mg, tapering off completely. Pain was returning when I saw the rheumatologist, and I was prescribed another 8 weeks tapering while I started on Hydroxychloroquine and then also methotrexate and then finally sulfasalazine (which I had to finally stop again after some months, due to nausea). The introduction of these were done in increasing doses and staged apart so that any side-effects could be identified as they progressed. So in the case of the sulfasalazine, nausea had been a minor issue at lower doses, but when I had reached the full dose it became unbearable. I also started having an odd inprick rash on my lower legs. It was decided to drop that, and I have been told they would not try to introduce it again.

    The second tapered reduction of prednisolone was therefore into my DMARD treatment. There was a return of pain. I complained to the specialist rheumatology nurse and she instructed me to get used to treating my pain. So I took regular  paracetamol for a while - some months - sometimes also diclofenac (also makes me nauseaous), some codeine for quite a few months (makes me itch), then naproxen (another anti-inflammatory). Now I rarely take pain relief. Things have settled greatly on weekly 20mg methotrexate injections and daily Hydroxychloroquine. 

    I was hugely grateful for the prednisolone, but I think it made me a bit odd, with lowered social inhibitions I guess, so inappropriate and prone to emotional outbursts.

    • anthony1801
      anthony1801 blair97497

      Posted

      Hi Blair,

      Sound like a cocktail of meds at doses that work at the time and adding in some pain relief is the game to play....... and some patience (I'll struggle with patience but have to get used to it by the sounds of things). I'm already taking codeine and paracetamol, gabapentin for nerve pain and the steroids at the moment...... Think ill rattle as well as creak-musical if nothing else 😂.

      From your experience though it sounds like I may reach a point that I may need less pain relief.... 🤞

      Thanks again

      Anthony

    • blair97497
      blair97497 anthony1801

      Posted

      Here’s hoping anyway. Just as I don’t have your symptoms, each of us will have variable responses and outcomes. And while I can rattle off little parts of what has been happening like its a story, all these developments take time. While it’s happening it is not so easy. The rheumatology team you have access to will have greater perspective and experience, so if they have support to offer, they won’t know what they can do or tell you to help unless you communicate with them. 
    • anthony1801
      anthony1801 blair97497

      Posted

      That's sound advice, thank you....... I just have days where there's no rhyme nor reason to my pain and I worry that it sometimes sounds so different from one day to the next that they'll think I've lost it....... You are right though, if I don't tell them what's going on I won't get the benefit of their expertise. Thank you😊

    • carol303055
      carol303055 anthony1801

      Posted

      Hi, it's me again. Yep, it's a weird disease. I don't think I'm alone in saying the symptoms can be bizarre and completely unpredictable. I first became suspicious that I had RA (I actually have Psoriatic arthritis but it's under the same 'umbrella'wink because my pain was 'flitting' from one joint to another and that sounded daft. Sometimes, I think I've lost it!  Best wishes, Carol

  • Tinabird
    Tinabird anthony1801

    Posted

    This was like reading my "soul brother" with the symptoms you have that are so similar to mine. I am on  Enbrel which is similar to Humira,  and have found a lot of relief through that, however because I am a pianist and my wrists hurt all the time they are going to add methotrexate. It was helpful for me to read one of these letters to see that that really helps. My doctor is a rheumatologist and has steered me away from Cortizone because of the side effects overtime. I hope you find a good rheumatologist, also might be interesting to integrate Dr. Andrew Weil's book on diet and other natural supplements you can use with your big gun drugs.

    Don't ever worry about complaining. "The squeaky wheel gets the oiled" Half the reason I feel I have this disease is because I am a person that never complained! Good luck with your healing you can conquer this!

    • anthony1801
      anthony1801 Tinabird

      Posted

      Hi Tinabird,

      Thanks for the reply.

      I am beginning to look at diet..... Even after 2 weeks of steroids I'm adding on a few pounds (feeling lousy and not moving much because of pain and discomfort isn't helping much either).

      Ill check out Dr weils book, I'm willing to try what I can.

      Thanks for the encouragement....... Feeling better for hearing from others and not feeling I can't say that this is all a bit rubbish 😁

      Thanks again

      Anthony

  • sez66
    sez66 anthony1801

    Posted

    I was diagnosed very quickly had 1 week of prednisolone and the saw rheumatologist within a week an started on titrating dose of methotrexate up to 20mg weekly with hydroxychloroquine 200mg twice daily . I still take paracetamol daily but when I started meds I did contact the nurses daily as had side effects at the beginning but having this daily contact I managed to get through and not had to changed meds due to early side effects. They are there to help and guide you

    • anthony1801
      anthony1801 sez66

      Posted

      Thanks for your reply sez66,

      I think from the sound advice of you all on here, I need to be in touch with the Rheumy nurse and not worrying to make that contact. I'll be checking in this week...... particularly as I drop th 10mg of pred by Wed's.

      Thanks for your reply and advice. 😊

  • anthony1801
    anthony1801

    Posted

    Well folks, quick update...... I took the sound advice given on here and made contact initially with my GP on Monday as my shoulders, elbows and hands started giving me pain.... My hips and back kindly joined in too (yey!!!). GP was great, gave me some advice about my steroid dose (mainly, don't taper anymore) and directed me to the Rheumy nurse who I spoke with today. How amazing is this, I have an urgent face to face appointment tomorrow and she's already said she'll be starting me on methotrexate at the appointment....... Can't fault our NHS!!! 😁

    Here's hoping tomorrow is the beginning of getting control of this condition. 🤞

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