G'day, new here. I had my 4th MTX dose on Sunday. I am on a tapering high Pred dosage as per the norm. I have been feeling like Superman while on the Preds (MTX kicking in also?) lately and have started to get active again. But today l am flat out, stone cold blaaaaaarrrgh! I wanted to (belatedly) celebrate my birthday today but I can't move my wrists, my neck has a wheat bag on it as l type, but worst of all l just feel absolutely terrible!....Zero energy, scatter brain (not that there's much to scatter) and all over dull aches etc etc.
Is this normal for R/A to come on so strong and literally overnight? Any answers to this newbie would be much appreciated as l am just learning how to cope with this disease, and if it's a bad sign I'm off to the docs, again. Also so I can use it for future reference. Thanks.
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Chongo
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Hi Chong’s, sorry to hear you’re feeling rotten. It might be that firstly your Pred has/is wearing off. I’m only up to MTX dose 2, so can’t comment on how things may be regarding the MTX. Sadly, RA can literally flare overnight IME, cheers Deb
Manuia (Cheers) Deb. I did not know or expect it to flare so suddenly, it blew me away this morning how cruddy I could feel in less than 12 hours. Ah well, hopefully when the MTX kicks in more and the Pred stage is over things will be cool. Onwards and upwards! Appreciate the reply and the tip about it flaring overnight, something I learned today and now can prepare myself for. Fa'afetai. (Thankyou)
Sounds about right darling.Sorry your hurting darling. I have taken my last dose of pred this morning and already my back aches. Steroids have their place to give support to people,but long time they are the devils sperm. I put on five stone in weight when i was on them longterm and had to have weight loss surgery. You have only just started MTX give it a chance to work,it can take up to 12wks to get really working in your body.Hugs darling and happy birthday from the pommy.xxxx
Well, that's not good having the back starting to play up on you sylvi, I'm sorry to hear that. Tell the bloody thing to behave!
I have been making a deal with the devil on the steroids since 2006 when my first shoulder blew out. It's a love hate relationship amkd I've never been on this high dose before. . I wish they invented a magic pill as effective as Prednisolone but without the nasty long term crud that comes with it, I would happily take the new magic pill for the rest of my life!
The Cortisone needles they shove into my shoulders every 3-4 months are also heaven, but for only 2-3 weeks, so I make the most of those less painful days l tells ya! A funny thing happened one day while getting the needles...My doctor had 2 young trainee docs with him and asked if l wouldn't mind if they had a go at jabbing them in each shoulder. I said "Yeah, go for your life, but I'm gonna give you a score on your performance so make it good". So the 2 trainees had a jab at their chosen shoulder. The girl doc was excellent, I hardly felt a thing so l gave her 10 points. But the young dude had to put it in and pull it out a few times, he actually hit the bone once which nearly made me hit the roof and feel like punching him in the nuts, so l gave him a 3, hah hah. The look on their face was priceless as they were concentrating so hard and both me and my doc were chuckling away. It was funny as. And yes, the weight gain l can understand too, l have the moonface at the moment, but l don't care because the relief the Preds have given me (Disregarding today's little episode) is worth it. I think my doc is tapering me off them too rapidly before the MTX has a chance to kick in. So I'm seeing him on Monday to up the dose I'm currently on and slow the taper down a bit. But it's all good, I have no right to complain...I met a bloke today who had a Danforth anchor for sale that l need for the sandy bottoms of the place I'm taking the boat this weekend. He was a great bloke who showed me some charts of the place I'm going, and even photocopied a couple of them and marked a few spots for me to go and try as I have never been to this particular area. He gave them to me and said "Good luck young fella". We talked for hours but when l started to feel a bit wonky, he asked what was wrong so l told him what is going on with my health. He then told me what he has been through in the past few of years health and personal wise, and it nearly bought a tear to my eye. He is 78 years old and a more decent, genuine bloke you will never find. He has invited me back to his place for a few beers and to talk fishing and pass down some advice. (l suspect you know l like to talk when l can't do too much, hyuk) So l can't wait till l go around there, crack a can or twenty and have a chinwag with the kind old bloke. His wife passed a little while ago and l reckon the old fella is feeling down, so I'm going back! He gets a bit of company with me and some Samoan traditional stories passed from my uncles and l get some great fishing advice from a man with over 60 years of experience, win-win.
Holy hell !! I just realized I'm bunging on again and it's way past my beauty sleep time, so thanks for the birthday wishes, sylvi. I'm off to the fartsack now but and feel free to contact me anytime if you want to yak about anything at all. You're a decent person in my book, even for a bloody pom. Cheers. ☺
i do not have confirmed diagnoses but what you just wrote is me to a tee just come of feather brain took all the time to spell own name my pain killers seem to help i like ibuprofen but cant take it gut prob it will go but it will return sos
That's why I love this site and the people on it. We are going through a new, cruddy experience and the great people here are helping us out of pure kindness and empathy. Gotta love that !!
A lot of people find that there's a point when they are tapering off pred that things go "phut". Talk to your doc about goimg back a dose and restarting taper more slowly.
I was kept on pred for 12 weeks to allow MTX to kick in. 4 weeks would be very early for it to have a significant effect....
Cheers, helixhelix, after reading your experience, I'm pretty sure I"m at the "phut" stage before the MTX has kicked in enough myself. I am seeing my doc on Monday. I will discuss this with him and tell him I want to go back up a few Mg's of Preds for a little longer, then taper off more gradually. He's pretty cool.
Thankyou for the reply, much appreciation from an Aussie beer swilling larrikin.
I wasn't going to say but damn it, and I only found this out now after doing hours of detective work of my own tonight...My doc has stuffed up after the original R/A diagnosis! He put me on 4x25mg daily for the first week, yep 25x4! Then 3x25 daily for the next week, then 2x25 daily in the third week etc. Bad mistake, a taper of 25mg a week? C'mon! The 25mg pills come in bottles of 30. (An empty bottle here in front of me)
But, it seems I was meant to be started on only 4x5mg daily and taper down 5mg every week for 4 weeks till the MTX hopefully kicks in. The silly fool. Again, I didn't want to say this 'cos l like the man. (For now)
So no wonder l was pinging around the place for nearly 4 weeks. I was full of the stuff and tapering 25mg a week is ridiculous l know, but my head has been all over the place lately and l never really thought about it. So I am now taking just one 25mg daily till we sort this out on Monday.
I now think dropping from 50mg to 25mg yesterday has caused today's horrible experience. You just can't taper that amount in one go and not have a bad reaction. It's definitely time to research a good Rheumy now!
I live in the bush and we have a limited choice of health care. He has been my GP for all of my life and been excellent up to now so want to give him a second chance at fixing this. I'm very thankful l have been taking massive amounts of calcium and vitamin D during this train wreck. But I have really enjoyed the last 3-4 weeks of zero pain, so that was a bonus at least. I hope l have explained this correctly, I am still in a bit of shock from what l have just found out, and my petrol tank is empty now...And yep, definitely time to find a decent Rheumy...Immediately!
Thanks Simba for the kind words. You take care and be happy too.
Sunny days ahead ☼→☺
Its my OH that has RA, not me. He had a shot of steroid, tapering dose for 2 weeks then saw another Rheum and had another shot of steroid. Dmards were then started. He felt almost normal for up to 4 weeks, but was really disappointed when the steroid wore off and he suddenly crashed back down and had to wait on Dmards to start working. It felt cruel to have a taste of normality and then lose it again. I hope the Mtx starts working soon, but its early days. Sympathies....
Thanks Norisa. You're right, I think l might just be going through the crash myself. It was a very bizarre experience though. I've had four weeks of jumping around like a crazed gorilla while on, and weaning down the Pred dosage, then last night feeling just a bit weak/drained 2 hours leading up to bedtime, then woke up this morning......Bam!
We live...And with people like the caring legends like you on this site...We learn.
So again, thankyou, you have put my mind at ease.
Probably done too much chongo; I still have difficulty ‘pacing’. It’s not easy as you don’t feel tired at time, it’s usually next day you crash: weird eh? Take care, hope you feel better soon x
Yeah, definitely going waaay too hard Kerena, so yep, gotta pace for sure. I also just found out the doc has stuffed up my Pred regime big time. Bummer.
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