I think that I need to increase my prednisolone as original symptoms returning, am waiting for a call from a Rheumy nurse.
I have some 1 mg tablets, any thoughts as to whether a small increase would be advisable. If I don’t hear from the nurse today I don’t think I can wait until next week for some relief of symptoms.
Currently taking 3 5mgs a day.
Thanks.
I wouldn’t change dose until you have spoken to someone qualified who knows your history.......if you can’t speak to your rheumy nurse ask your regular pharmacist......he will know what drugs you are on or have taken previously.
Thank you for your fast response AgedCrone, wise advice.
I hope you get sorted....if not.... a nice glass of Red may dull the pain?
If only.🍷
I agree with AC. Do speak to your Rheumy Nurse today if at all possible and keep trying ...
Thank you Lolabridge will try again , but don’t want to be a nuisance.🙂
I have taken it upon myself to up my prednisolone on several occasions due to being unwell on Fridays and felt I could not wait many days for a call back.
I called rheumatology to explain what happened and the dose I upped myself too. They were ok with my actions.
I'm not saying that you should do this, just giving my experience.
Thank you for your response Mmrr, yes not a good day for a resurgence of symptoms!
I understand that this is your experience.🙂
Have just tried the rheumy number, only open 9.30- 11.30 weekdays.😓
I am the same as you Mmrr my team say go up and down o a window of 5mg and this works well for me.
Thank you for posting this message Deeb2908. It’s useful to know.
I’ve done it twice,rheumatology helpline is ok,but sometimes take 48 hours to get back.its really hard when I feel rough,they say ring GP,GPsays ring rheumatology.
Sometimes I feel as though I’m between a rock and a hard place. Take car
I'm the same as Mmrr too. I've been on steroids for 27 years now and have done this a number of times over this period following the go ahead from my Consultant to do so.
Good luck 😊🤞
Thank you for replying Kags1068, 27 years is such a long time, do you think you will ever be able to stop taking steroids?
Thank you for your good wishes.🙂
If I'm honest and realistic, it's probably unlikely I will get off steroids completely now. Prior to starting them I'd always been adamant I would never take them eventhough my then Consultant had suggested it a number of times when I was a teenager. Unfortunately at about 25 I developed serious eye inflammation problems, so I no longer had a choice. Obviously eyesight is more important! Due to the eye issues and joints I've been on it ever since at varying doses.
I imagine apart from the odd tweak, that probably won't change very much due to the risk of upsetting the eyes. It would be nice to get off them altogether, but sometimes I guess other risks make it too difficult.
I bet you wish you hadn't asked now I've waffled on - haha! 😊
I do hope you get something sorted so you can be more comfortable. Fingers crossed it won't be too long for you before they find a more long-term treatment that works well and you can wean off the steroids. 🤞😊
Take care x
So many of us have been adamant Kags, I am sorry you have serious eye inflammation problems so you have to stick with the steroids.
I have been ‘waffling on’ all day. 🤐 You have all been very generous with your support.
Thank you for your good wishes Kags.🙂
Aah, thanks for that. You are very welcome 😊x
You make a good point.....your aim should be to get off Prednisolone ASAP. It draws you in for immediate relief....but the longer you take it & the higher the dose you take .....the longer & harder it will be to get off it.
I’m sure Kags really wishes the downsides of Pred were better understood all those years ago. Of course there are some instances where Pred is necessary....but always try to stay away from it if you possibly can.
I only took it for a few weeks 20+ years ago & very fortunately I proved to be allergic to it.....so apart from a few different steroid injections....I have never taken steroids...now not even with my Rituximab infusions.
One of the lesser mentions with Pred is how it causes bone weakening& can lead to Osteoporosis in later life ....& you really want to stay clear of that.
Yes, I understand your comment about prednisolone AgedCrone. We crave relief from symptoms but there can also be a high price to pay!
Saying that, I am also feeling apprehensive about Methotrexate.🤔
I took Mtx for 7 years very successfully...many have taken it for much longer ....it’s only the people who struggle on it who spend ages describing how awful it was for them.....that doesn’t mean it will be bad for you.
I’m sure I’m not a lone voice.... saying “please give it a try” ....just think in six months time you might be feeling 100% better but unless you try it you will never know.
Unfortunately there isn’t a one pill suits all treatment for RA & sadly a lot of us have to go through a lot of kissing frogs before we find that Prince of a drug that makes us forget all the frogs......so keep looking it’s out there for you!
Very valid point AgedCrone, yes I know that I have to give it a try.
I am grateful to you for your positive comments, and can’t wait to find my prince 👑 and ditch the frogs 🐸.
Took me 16 years... but I had a lot of fun on the way in between the aches and pains💃🍷✈️🏖⛱
Great positive message AgedCrone, hope the fun continues.😎
I will make sure it does........I found out a long time ago that if you let the RA symptoms beat you & sit there clutching a painful limb...it just feels worse ..but get up & move...much as you don’t want to& it often miraculously feels better.
You are determined and upbeat which is a good motivator for me and I’m sure many others who read your posts.
Glad you see the logic of never giving up ...it’ really not easy right now with Covid hanging over our heads....but I find being stubborn & determined beats the alternative!
I do, absolutely, and personally Covid has taken a bit of a back seat to RD.
I've done that a couple of times and rheumy was fine with it both times.
🙂
Exactly same situation for me, Rheumatologist trusts me to not abuse them. I’ve weaned myself from 20mg originally to 15 & currently taking 5mg. Had vision problems (high eye pressure) & pre diabetes issues ,Ophthalmologist has said is related to medication so I’m adamant I want off of them, some days when the pain is 2 much though I do increase, maybe by 2.5 or 5. It’s strange as they say say typical fibro sufferers don’t benefit from steroids, yet when ever I have bloods I always have raised inflammatory levels. They have massively helped me along with other meds but I can’t wait till I can finally reduce some I hate taking all this poison & still feel bloody awful.
Prednisolone is the only med that has helped me, I'm on 16.5 mgs a day just now, down from 20 mgs and taking it very, very slowly after many failed attempts to reduce.
Rheumatology have suggested several tapering regimes that have been just impossible, due to flaring.
It is encouraging to hear that you are making progress with reducing. I understand not feeling well, 'tis my life too 😥
Good luck to you Mmrr in your attempts to reduce, I agree with you it is not always possible to taper in the way your medical team suggest.
It is so hard having to wait for a call back bless you. I am very fortunate to be in a similar position to Mrrr and Dee in that my rheumy team have given me the go ahead to tweak my prednisolone as needed. I work so hard to keep tapering it and just can’t get under 7mg for the last few months. I have currently increased it to 8mg again as there have been days where I can hardly stand up. I have an telephone appointment with my rheumatologist on Monday so will have a chat again about this. I am very fortunate that the prednisolone is on my repeat prescription too. I’m keen to come off it of course but thinking a few more tweaks to my meds needed yet. Could your GP give you some advice whilst you are waiting for your rheumy team to get back in touch. My GP doesn’t get involved and just advises me to contact my rheumy team so am thankful the rheumy team have given me a little bit of scope to adjust my steroids as needed. Gentle hugs 🤗
Thank you for your message Summerrain14, I haven’t spoken to the nurse before, maybe I could ask if I can tweak my dose too.
It seems as if it’s a slow process getting it under control and tapering.
I have called to ask my GP for a telephone appointment today, not sure how informed they are though.
Your gentle hugs 🤗 are gratefully received.
When you speak to your rheumy nurse it would be worth mentioning for some guidance if you start to flare again whilst tapering the steroids. It gives me peace of mind for sure but I always keep in touch with my rheumy team if I do need to increase my steroids. I am very fortunate to have my rheumy nurse’s email address but am aware to not make a nuisance of myself although feel like I had to this week after a very unhelpful conversation with one of the GP following my blood tests. I’ll not bore you with that. 😁
I have read that your GP has been in touch. I am just so sorry that the plan was not clearly communicated with you. 🙄
More gentle hugs coming your way 🤗 x
Thank you Summerrain, I must admit that the strange feeling of fuzziness I have may stop me from absorbing everything I am told!
Please keep those hugs coming.🥰
Oh the fuzzy feeling is a common one with many of us. We may refer to it as brain fog. One of the many symptoms of RA. Some days I struggle to remember my own name. 😁.
Always here for lots of gentle hugs for you. 🤗🥰 x
It’s a brain peasouper.🧠🤢
It’s so hard making these decisions as realistically we don’t mentally want to take them, but I’m with Mmrr, I am currently on prednisolone & desperately trying to reduce so it’s different for me, but I’m on a lot more than you & being told by my Rheumy not to rush it, but I’ve started a new drug & want to know it’s showing signs of working so masking with steroids to me isn’t productive but alas I’ve had to go back up again today to be able to get by. But I’ve been on the steroids for over a year & August this year I was put up to 30mg daily, I’ve got it down to 15mg In the last week, but obviously this for me hasn’t benefited me, so today I took an extra tablet (back up to 4) tomorrow I will return to 3, then alternate between 3 & 4 daily until I can settle on 3 which I hope to achieve in the next week. I have discussed using steroids with rheumy as he is keen to get me off them especially now on new drug, but he’s also keen I do it methodically, not sure my reply helps you make that decision but your only talking a couple of days & hopefully you can get a reply from dr, RA nurse or rheumy etc, your already on the drug it’s not as if your self medicating with something new.
You are so right, I feel that trying to make decisions knowing that you are not always basing them on the knowledge needed certainly makes you reluctant.
I understand what you say about the steroids masking the effects of the new drug, and it’s frustrating for you that you have had to increase again today. I liken it to being tied to a piece of elastic, just as you feel that you are moving forward you feel yourself being pulled back again.
I appreciate your reply Durrell and hope you can achieve 3 mgs in the next week.
😷🤞👍
I revealed on here recently after suffering for 30 years with RA I'm now in remission that is no pain or suffering in 2 years, I still take MTX and biological medication, I haven't taken steroids for a number of years and would like to tell you my experience of taking them, at one stage they were always my get out of jail card not well prescribed more steroids, probably on them for 5 years at least, gradually weaned off them just the occasional injection in the backside when things got bad, in the following years I was diagnosed as being a diabetic, I'm six foot tall 13 stone love walking get plenty of exercise and I haven't got a sweet tooth, no history at all in my family of diabetes , so I asked my well respected consultant if it was the result of taking steroids over a long period of time she calmly said possibly, I suspect not everyone will become a diabetic because they've been on steroids but a percentage will, I believe if you take less than 7.5 mg of steroids your body still produces steroids so that could be a reference point but any changes should be made by your consultant, I believe steroids got me through a bad time and helped me to keep working for a time, I also think for some there is a price to pay RA has got tired of beating me up but I now inject myself with insulin twice a day, if I had my time again I would still take steroids but I would not be so reliant on them I wouldn't take them to allow me to do things that are not totally necessary, I would try to keep them down to the minimum with the supervision of the experts.
Your remission is a great outcome Pitbull, congratulations to you.
Sorry about steroids possibly causing the diabetes, yes a high price to pay (what a trade off).
Thank you for sharing you experiences and wise words.
I hope you continue to live without pain or suffering from R.A.
That’s a really good post, I’ve taken everything you have written onboard, hindsight is a wonderful thing, thank you for this valuable contribution, I’m sure we all benefit from your experience & this is a great way to learn & be aware!!
Prednisolone tapering difficulties
Prednisolone
MTX increased to 17.mg and have not been feeling well all week..
Prednisolone!
