This is my 7th day weaning from 15mg's to 10mg's Pred. daily while I have upped the methotrexate to 15mg's weekly (this is my 4th week for the MTX increase).
I started the Pred. on October 26th with the onset of this disease.
My Q is this - is Pred. weaning capable of making me feel sickly and kind of despondent today, where I have not felt like that yet - even with the unbelievable pain? Or is it just that I haven't seen the sun (Canada, winter, snow, grey for days) for some time? It seems difficult to know what is causing what.
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Nanna71
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The rise in the amount of methotrexate may be making you feel more sicky. But feeling down is a common problem coming down off steroids as they make you feel a bit high (for some people more than a bit) on the higher doses.
You haven't been on steroids long (end of October) but you don't say what dose you were on or how quickly you are coming down as that will affect how you feel.
The prednizone started in hospital at 50mg daily - and continued for 5 days, then 40 for one day, then 30 for one day, then 20 for one month, then 15 for one month, then 10 - where I'm at, and, I guess 5 until gone. In all of this I was put back to 20 from 10 as the MTX 10mg's wasn't working and the pain came back. So now, 15 MTX and 10 pred.
I think you are quite likely to be feeling a bit down anyway as you come down from that relatively high dose. But also you have to come to terms with the diagnosis and changes to your life style etc, which can also make you feel down - very like having a bereavement, which, of course, it is.
It can be quite a relief getting the diagnosis which keeps you up for a bit, but then reality stikes and you have a lot to come to terms with. Feel free to say how you feel on here - we do understand.
Yes, what you are saying sort of strikes to the heart. I am reminded, even when I put my socks on (I have always stood on one foot to put the sock on the other foot) that I need to sit in a certain chair where I can reach my toes to start the process on the floor and so on and on. I feel like I could use some help, for crying out loud. What a life-changing thing this is. I have no idea what I will be capable of in any day. And I used to be capable of a lot.
But, I did make bread yesterday - my shoulders and hands are paying the price today - the nearest town is 112 km away so saved myself a 60 dollar gas bill plus 4 hours on the road.
I can tell that the folks on this forum know exactly what I'm feeling and that is a blessing to me. Thank you
I took Pred for almost 3 years. It’s like cocaine - can zoom around like a mad thing. Come off really slowly 1mg at a time over several weeks as the last bit is the worst. I’m now on 20mg mtx, sulfasalzine and was still having to take Pred. Been on Benepali for 3 months and miles better and no Pred. You may need something else, but it’s hard to tell when taking the steroids as they mask the inflammation.
I raged against it for 3 years until I recognised I had to have some acceptance. I went to see a counsellor who has helped me immensely and I now have acceptance. If I can’t do something, I don’t fret over it. I run a business and my 14 hour days are a thing of the past and I had to put in a manager. I can’t walk around town far and accepted that. I quite often go to bed in my jumper as can’t lift my arms to get the bloody thing off, hahaha.
I would recommend talking to someone if you’re very low. Accepting life is good, just different will make you feel so much happier ❤️💋
Could be a combination with dose changes. It's never easy to determine what's causing what side effect when you're changing doses of two meds. Pred can affect our mood, the higher the dose the more your body had become used to it. But continually grey days affect my mood. Fortunately today it's been blue skies albeit cold, at least I managed to get out in the garden to get some fresh air in my cold-ridden body! I would think it's likely your MTX dose could be causing the nausea but it tends to ease off the more you get used to the higher dose. You could either ask to have your folic acid dose increased if you're taking it fewer than 6 days or try more traditional nausea reducing things like adding ginger. If it's becoming a problem maybe your GP would prescribe an antiemetic?
I hope you feel at least a little brighter tomorrow.
My folic acid is 5 mg's Monday to Friday. I wonder if I should ask for another day? Thank you for the encouragement. I always seem to feel much less pain later in the day, which it is now.😊 I have no GP here in the mountains of British Columbia. But my Internist will call me back promptly when I phone him.
Can't harm, especially as you've had a dose increase of MTX & reduction of pred, it would only be the one extra day after all & would be the same as I take. I think most of us can relate to increased pain in the evenings/nighttimes when our body is ordinarily relaxing. Do ask your Internist. If you don't let him know he obviously won't be aware & I'm sure he won't want you to be troubled with side effects if they're preventable or at least eased somehow.
Sounds like you live in a quite remote area Nanna7.
When I flare my steroids get pushed up to 20mg. I can fast track down with no symptoms from 20 to 10mg quickly. Dropping 5mg per week. After that the reduction is much slower.
I take MTX. For me, my tipping point was 15mg MTX. At that point the nausea came on quickly. 5mg folic acid 6 days a week keeps it at bay for me (it varies some need the max some need less to keep the nausea under control).
However on MTX day I need to take it easy most of the day otherwise I have nausea on the following 2 days.
Hi Nanna,like you I haven’t been diagnosed for long,(round about 2years)first year I felt it was pretty much under control with the meds..only wee niggles now and then,that you actually forget how bad you felt.then bang it comes back with a vengeance and takes the life you had from under you.you can’t plan anything because you never know how your going to feel.all you can think of is the pain and fatigue, then you take the steroids while getting the new meds into your system you feel half normal again.but when mine was tapered everything just went back to the same pain.the rhuemo told me that you get side affects when your cutting down and stopping.as on a higher dose they give you a touch of the feel good factor, but also they mask the pain which lessens the fatigue and if the ra still isn’t under control with the new meds everything just flares again.think what I’ve learned from reading people’s experiences with ra is that no two people are the same and it’s all trial and error with meds and nothing is quick fix.i just couldn’t have imagined how much it could change my life.
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