Very slow progress - can anyone share experience coming off pred? Or on enbrel?

I'm down from 10 to 7 mg pred daily and week 6 of Enbrel. I'd love any experience of doing either of these. I do have the odd moment of thinking - yes I'm doing x or y which I couldn't do a few weeks ago, but I'm very tired a lot of the time.

It might help me to know how other people have managed these two things.

21 Replies

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  • Hi Cathie. I take MTX for my RA but have been on pred for 6 months now for polymyalgia Rheumatica. I'm reducing and down from 60mgs to 7.5. I've found the reductions hard going especially below 10mgs the withdrawal symptoms can be bad especially extreme fatigue. The trouble it's hard for you to know if it's the enbrel or the steroid reduction. Best talk it through with your Rheumy or GP. Good luck with your treatment. Angela x

  • Hello Cathie!

    I hope you're managing ok with the Pred and Enbrel!!

    I'd been tapering off steroids and got rid of them completely at the end of April. I tapered from 5 to 2.5 then 1.25 and then 0mg. I had 4-6 weeks on each dose. It was quite a fast taper and it was very exhausting but I managed ok!! I experienced bad fatigue, low pulse, low blood pressure and blood sugar and felt dizzy a lot of the time. I would be quite bad for 2 days then a fe days less bad and then my body adjusted to the new dose. If you like more detail, I am happy to answer any quetion you might have!! Love, Christine xx

  • Were you just on 5mg and for how long? I think you're confirming my feeling that I've just got to grit my teeth and go with the side effects of reduction. Glad you've got there now!

  • I used to be on a dose of 10mg when my RA was uncontrolled. Once my biologic kicked in I reduced to 7.5mg and stayed on that a few months. I redced to 5mg again for a few months until my rheumy decided to let me taper off completely. I think I was on the 5mg for about 3 months. But then I was able to taper very fast. I think at first he was worried RA symptoms might come back but once I achieved full medically-induced remission he said I can go fast if I prefer that. I'd still go for the fast taper even though it was hellish at times. I just kept thinking about how nice it would be not to have Pred for breakfast!!

    I hope you'll not find the taper too horrible and that you'll get through it ok as well!! xx

  • thanks, so far so good with a little ironing

  • Hi Cathie I'm relatively new on Enbrel (just had my 11th injection so further down the line than you) and I've just started Pred for the first time as the Enbrel doesn't seem to be doing much and my DAS at my check up last week was the highest its ever been. I stopped MTX at the end of Feb so we're not sure if that's the reason things don't seem to be going too well or whether its just that the Enbrel isn't working. We decided to give the Enbrel 2 more months before possibly changing to something else or maybe adding in Lefluomide (spelling?). I already take Sulfa (as well Arcoxia and Omeprazole). The Pred is giving me some relief which is good but the plan is to only take them for 6 weeks. The bottom line is I really just don't know what is causing what and what is helping and what isn't. Very confusing time.

    Do you think the Enbrel is helping you?

  • I think it's helping a bit. Pred is confusing things, but I am feeling stronger and more positive. I'm trying to set myself small objectives. Got daughter to set up ironing board in bedroom so I'm ironing a couple of items, then lying down then back to ironing. Trying not to overdo things!

  • Hi Cathie I have been on Enbrel since January and I do think it helps a lot but now I am reducing my pred I am so very very tired. I was at hospital last week and they found a fractured pelvic bone (which I am told is quite common due to pred) I have been on loads of pred for 2 years, injections, infusions and by mouth. Down to 5 ml pred a day now. Just bad luck for me I think! I feel like LucyLocket really Very confused!!! Hope you feel the benefit of Enbrel soon.

  • Pred is more of a problem than I thought isn't it. I think there's an enbrel effect as I feel worse towards the end of the injection week, sometimes I feel like the mole in wind in willows who puts his nose out of his hole and sniffs the spring.

    Thanks everyone for your comments!

  • Oh yes and the injection site rash is reduced now

  • interesting to read the replies , I am reducing my pred. too , am down to 10mg this week and so tired and didn't associate this with the reduction , maybe it is this , difficult to know what is causing what sometimes. week 6 of cimzia and not much doing but DAS score has come down a little . good luck with the Enbrel and I expect like me you are looking forward to getting of the dreaded pred. x

  • I hope cimiza kicks in for you. Pred confuses things doesn't it. Reduction of p will make you tired, so I hope you can take things easy

  • Hi Cathie, I'm wondering if you are still on MTX. I too am tapering off Pred. And I had started Enbrel. I had done only 2 injections. I developed a lung infection and have been told to discontinue the Enbrel until later, if at all. I managed very well on 20mg of MTX and got down to 5mg of Pred from 15. I was on 10 for a few months . I stayed at 5 for a few months, too. I am now at 2.5 and it's not working- starting to feel that horrible pain in wrists so I have started taking pain medication which turns me into a zombie. I'm also beginning to think the MTX is contributing to lung issues so I am in a miserable place today. Here in U.S. There are 1mg pills of Pred in addition to the 5mg. Once I got down to 10mg And was there awhile I then went to 8.75,then 7.5, 6.25, then 5 a day. It does involve cutting them to get the right amounts. My internist seems much more concerned on how to taper then my Rheumatologist so I am following his instructions. Right now I am scared I will have to be pulled off MTX due to lung issues and am just sitting here in limbo waiting. I will be interested to see how you manage.

  • Hello. I've been off Mtx since January. Liver damage, but I'd cheerfully go back on because I've had so much pain etc since coming off mtx. So at the moment, I'm just on enbrel and pred. Have tapered down to 7 from 10, and am feeling tired, but will just have to keep going I think. I haven't tried cutting them as they're so small, but that's an idea - we also have 5 and 1mg pills here. I'm just back from the physio who gives me magic massages on my knees which helps a lot.

    I'm a bit confused as to what is going on to be honest - I do have moments when I feel ok, first thing I'm stiff and tired though. Week 6

  • For me it worked to go slow and not lower dosage too quickly with the Pred. We are all different I know. Right now like I said I am at 2.5, a day. I am going to try to stay at this and see what happens. I wish you luck with the Enbrel. Don't give up- it may just be taking longer than you had hoped. I know MTX it took me 2-3 months before I saw benefits.

  • I was in a hurry as I have Diabetes 2 and the pred doubled my blood sugar levels. I agree with the not hurrying things too much. I'm trying to set myself objectives so that i keep a bit active!

  • This thread makes interesting reading I had not heard of Enbrel before nor Pred, neither have they ever been discussed with my Rumy. I had been on MTX for 10 yrs but have been told to come off a couple of mths ago as my platelets have been low. Platelets now settled at 103 but they sent me to a Hematologist and he says he will monitor the levels but may think about a bone marrow test to see why platelets not forming enough. Early in this thread I was thinking to try Enbrel but not so sure from what some have said. As for Pred that does not look so good either from your comments. I am flared up atm but not so bad as some of you sound just hands swollen and shoulders useless! lol So now just on Naproxen 3 a day and Paracetamol . Not sure what to do next ,have any of you seen this? arthritisresearchuk.org/art...

  • Sorry, I should have read this and helpful responses, before posting my own question. Don't know how I missed it. I am due to start Embrel in a weeks' time, so am watching your response with great interest.

  • Good luck jora. This is my week 7 and something is happening. I'm more motivated, I find that the fog of inflammation has subsided. Last week I started to set myself tasks, to begin with some ironing, so I did it in bedroom so I could sit/ lie down in between. Then yesterday I cooked a meal, well I prepared the main bit which involved standing at cooker for about 15 mins. But I'm trying to pace myself because yesterday I'd overdone things and needed to rest.

    But note that I'm starting from a very low base I could hardly do anything seven weeks ago!

  • Good luck jora. This is my week 7 and something is happening. I'm more motivated, I find that the fog of inflammation has subsided. Last week I started to set myself tasks, to begin with some ironing, so I did it in bedroom so I could sit/ lie down in between. Then yesterday I cooked a meal, well I prepared the main bit which involved standing at cooker for about 15 mins. But I'm trying to pace myself because yesterday I'd overdone things and needed to rest.

    But note that I'm starting from a very low base I could hardly do anything seven weeks ago!

  • Good luck jora. This is my week 7 and something is happening. I'm more motivated, I find that the fog of inflammation has subsided. Last week I started to set myself tasks, to begin with some ironing, so I did it in bedroom so I could sit/ lie down in between. Then yesterday I cooked a meal, well I prepared the main bit which involved standing at cooker for about 15 mins. But I'm trying to pace myself because yesterday I'd overdone things and needed to rest.

    But note that I'm starting from a very low base I could hardly do anything seven weeks ago!

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