I want my Prednisone back

I want my Prednisone back

I came off my taper on Friday, just in time for MTX. I can still see my knuckles, which is nice (as well as slightly odd, I wonder how long they've been missing before I noticed) but my hands are swelling again and the ball of my left foot feels like it's caught in a bear-trap. Hubby checked, and there is a definite absence of bear-trap. I ought to be grateful, I know. I had this lovely little vacation from agony, like sneaking out of an unwelcome conversation. The talker is still here, though. It's horribly, cruelly patient and I'm coming to hate it more and more. I'll have to ask for more codeine. Or something. I know, I've read all the terrible side-effects of steroids. I have a friend who said steroids were her husband's last resort before a knee replacement. I DON'T CARE. All those are just possibly's and some-day's and I live with right here and now. Back to hot baths and fragility. I'm going to try biking tomorrow with my wonderful adaptive adventures friends (you can check 'em out on adaptiveadventures.ca) I'm afraid. How much will pain cost me? I already can't imagine rock-climbing with my hands as they are. (yes, the blind Canadian does rock-climb. I have pictures!)

I'm venting. It's this or break things, and I don't want to have to clean up the mess. Only a week 'till I see my rheumy, and she and I are going to have a very serious talk about pain control.

-Bat

17 Replies

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  • I sympathise, Bat. Just coming off a taper myself, but have had to go back and use the Bristol method. 6 days old dose, 1 day new, 5 days old dose, 2 days new etc. This gives one's adrenal glands a chance to wake up.

    I'm going to see the surgeon today about knee replacements, so I'm actually quite pleased that the problem is quite visible.

    I might have told you that I used to do serious rock-climbing. I found being myopic a help; close-up view of hand and foot holds, but only a very blurred view of the scary drop. Since then, I have become scared of heights. I agree that feet need to be in good nick. Hands even more so, perhaps. Maybe they can find another activity for you, until you can get back up to speed.

    Take care. Jo x

  • I went tandem biking today, and it was great. My CRIS-folk think they'll be able to adapt climbing for me, but you hadn't told me you used to climb! Because of the texture and colour of the stone, I had very little depth-perception, so I mostly was climbing by Braille anyway, along with helpful suggestions from my support climber when I needed them.

    On the prednisone I felt like my own self again, I felt like walking and writing and singing. I enjoyed my biking immensely, and I plan to be going out regularly, but I'm very sore now. I will adapt. Resilience is part of my definition of myself. Some days I'm just crankier about it than others. I look forward to hearing about your appointment!

    x Bat

  • hi, i know how you feel... just yesterday i ranted on a well known social media site about the rage and frustration i feel because my RA is acting up a treat due to my next to no med treatment. im on a prednisone taper atm, tomorrow i drop another 2.5mg to 15mg and my RA is already active in my feet and lower back, or my hips and knee. today a minor in my hand and major in my lower back! so annoying! the pain grows in intensity as i awaken and my body realizes its awake....BOOM come another couple hours or so and i KNOW its gonna be tramadol and dihydrocodeine time,,,, i hope you get some relief soon... :D

    matt.

  • It's infuriatingly random, isn't it? I almost think if it were a steady, solid, one-place kind of thing that I could learn to cope, but this disease just won't cut me any slack. My gp has given me a prescription for codeine, but it doesn't really do the job. Today I'm having the knee-foot-wrist combo. It's like ordering an UNhappy meal at MacDonald's. I hope you get relief too!

    -Mary

  • I started on sulfasalazine, had the rash so back on steroids. Then Metotrexate, breathlessness, dizzy spells and liver, so back on steroids and now on Hydroxy. After three months on that I took myself off steroids which I had been taking daily at 5 mg a day and I have to say that contrary to expectations the Hydroxy seems to be working q well, far better than either of the others. I would say that I have gone from an initial pain of 12 out of 10 to about 2. Unfortunately tripped over my cat and broke my ankle so back on steroids low dose so I can cope with the crutches as my wrists are still a little stiff.

    But I am amazed at how good the Hydroxy has been in comparison to the previous two despite the low risk of long term use to eyes. My rheumy lets me order my prednisolone from my gp on a repeat prescription too.

  • Hey Tuttlebees that's fantastic news about the Hydroxy! It was the only DMARD that got on top of RA pain and took my ESR down from mid 50s to 17. Unfortunately my face and lips started to swell when I took it on its own for a second time and I had to come off it after 18 months. I do miss it and always think it is an underrated DMARD. Each time I came off it I flared.

  • It's no good having things get better if you break them! *wry grin* I'm glad you've found something that works for you, and I think I'm going to talk to the rheumy about prednisone at least until we have something that's actually working for me. I don't like feeling at the mercy of whatever random joint acts up, and currently my left foot is driving me bats. 'nuttier than squirrel-poop' comes to mind.

  • Hi Bat,

    I fortunately am not at the stage where steroids are a regular thing so cannot really offer any advice around your current problem (unless you want some wacky ideas about boosting adrenal health such as walking barefooted on the grass or a sandy beach is really relaxing and supposedly helps reduce free radicals and boosting adrenal/cortisol balance thus reduces inflammation! Liquorice helps to slow cortisol reabsorption and thus helps with inflammation but not good for those with blood pressure issues!) so I am truly writing with offerings of my moral support and best wishes in hoping things turning a corner for you soon (those wishes stretch comfortably to Jora, Mohikan and Tuttlebees and others struggling with this) :)

    I've checked out your 'adaptive adventures' group and was very impressed - keeping active with them can only be positive for your wellbeing - I love the picture of the mobility scooters lined up on the beach facing the canoes that everybody is engaging with.... Any one out there know if we have such an outdoor adventure group active in the UK?

    All the best

    Ali

  • That picture is one of my favourites, too, Ali. I appreciate your moral support, and actually, have been craving (and drinking) licorice tea. I've been the Official Babbler for CRIS for quite some time now, doing public speaking and writing for them. They really are amazing. Their long-term plan is to spread the program by teaching other people how to start it up. I want to save up for a kayaking trip on the ocean. It was good to get on the bike today and leave pain behind, at least for a while. The great thing about the recumbent bikes is that there's much less pressure on my knees and ankles than uprights.

    It's still a little chilly for barefoot, but I do think I'll start having my tea on the deck out back. Cherry blossom season has started, and everything smells divine.

    Bat

  • Bat I understand how it feels to stop steroids. The first time I ever took them I became a contented young woman for the first time in many years and recall begging my GP to let me remain on them. No joy there. Now they turn me bipolar at the higher doses so my GP says they are a last resort. I'm in a lot of pain just now everywhere but will try naproxen at regular intervals once I've had my blood tests done tomorrow. All drugs have their downside but the upside of steroids has a lot to commend it. If they help then they help - surely life is for living unless you have other conditions made worse by steroids of course.

    A good friend of mine is a musician and a passionate climber. Last year he had a terrible fall and broke most ribs, femur, both knees and sent his teeth up into the bridge of his nose. He survived somehow, and is singing and climbing again despite a rather wonky appearance and an even more resonant bass voice! xx

  • Twitchy, some people will do anything to acquire greater resonance! *grin* but yes, that was exactly how it felt. I was ME again. I think there is a plus side to this, though, in a strange way. I'm suddenly and completely aware of how much pain I'm coping with on a regular basis. It has made me think that I need to be more compassionate with myself, and more honest with the people around me. It's made me certain that I'm not malingering. I agree with you, that quality of life is the important bit. If it's all the same to you, though, I think I'll stay a soprano and not be quite so passionate a climber as your friend! xx

  • I came off after being in them for 16 months. Just a small dose but tried to at least! 3 weeks later - I am back on! I love them in so many ways but hate the way I need them! I AM A PUFFER FISH! So, do you take them so that you at least feel like doing something or not take them and not feel like doing a thing! ?!?! I am back to exercising and biking instead of laying on the couch! But is there life after steroids?? HOW!?!?! I wish you the best and hope that you can find relief no matter how you do it!

  • It's a wretched dilemma, isn't it? I wish you the best too, and I hope you find relief, too. I'm on so many meds for other conditions that I've become accustomed to needing them. If steroids become part of that, then so be it. I need to function in my life, too.

  • Oh, a tandem! I used to go on one ( the back), but it was quite scary in London and one needed a lot of trust.

    You seem to be in a good place right now, Bat. I also pleased. Long may it last.

    Jo

    x

  • Hi Bat,

    What is the balance like on a recumbent... They look quite tricky to me to balance and keep straight so I haven't really looked down that road (so to speak!) but cycling - particularly touring - is a definite joy for me and I would hate to have to prematurely give it up. Sea kayaking is also a glory ... Anyway of tapping into a fund somewhere to get an 'assisted' place on such a trip?

    Cheery blossom is such a delight and our neighbours tree is currently blooming so now I know spring is really here? Listen to me! talk about caught up in the season... I love spring it has always been my favourite season and no amount of RA will change that in me :)

    Ali

  • The ones we use are trikes, so there are two wheels in the back and one in front. This makes them very stable, and much like sitting in a lawn chair to peddle. They do sit closer to the road, which can make visibility a problem. We usually have one safety bike to keep an eye out for random traffic stupidity. CRIS itself is a non-profit, which means they don't have any funds to speak of, but if you're interested, I'd email Dawn from the website. She's a really neat lady and may have some ideas of where to look for funding.

    I love the season, too. Spring and autumn are both my favourites, the times of transition. RA hasn't kicked that out of me, either! :D My bike ride yesterday was an unmitigated success, and I felt like...well, ME again. I'm a bit sore today, but not more than I was yesterday, and oh the glory of speeding down the roads and paths. *happy sigh*

    Bat

  • HONEY, I FEEL YOU !! IF it were not for the Prednisone, I have NO IDEA how I would function! I have given much thought to our dilemma and as far as I see it, RA is CHRONIC, since WE GOT IT and it's NEVER going to get better or go away, THEN < Might as well take the medicine ! If we have to try and COPE , might as well as well do it comfortably! I go to pain management ( I am in the USA ) and that does HELP SO MUCH! But the steroids are DEFINTELY a Staple in my medication regiment and I thank the Lord daily that it DOES HELP and I may have side effects, but I don't have to live in misery BARBARIC style! It keeps me from being so snappy at the ones I love, keeps me mobile, controls pain and it larger scheme of thins, EVERYTHING IS BAD FOR YOU! Smoking , alcohol, even food is rotting our insides even though it nourishes US! SO... HONEY, KEEP YOUR HEAD UP , LOVE YOURSELF and THOSE DEAR TO YOU and I send much LOVE< COMPASSION AND EMPATHY! .. Your Hillbilly Friend, Tommy

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