I'm writing on behalf of my lovely mum who was diagnosed with Sero positive RA at 83 years of age last October. She has been on methotrexate and also prednisolone since then. We are trying to reduce the steroids but ever time we get to 5mg her pain and symptoms start to return.
Has anyone else been diagnosed at this age and how does everyone get on when trying to reduce prednisolone? Mum has thankfully, no bad side effects at present from methotrexate but does get very tired.
Thanks in advance for any replies.
Written by
PaulaE
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How quickly (or slowly) are you reducing her prednisolone? When I was taking them I reduced them by 2.5mg every two weeks. I was only on the for three months and I started reducing them after the first week. I worked out the doses in a diary to make sure I did it properly - it went on for so long if I hadn't written it all down in advance I'd never have got my head round it.
Her starting dose, whilst waiting for tests prior to starting methotrexate, was 15mg. After starting methotrexate, the hospital started reducing them first to 10mg for a couple of weeks, then to 5mg for about 4 weeks I think then 2.5 mg - when twinges started. So methotrexate was increased and predisolone put up to 10mg again, then reducing again and when we got down to 2.5 mg the pain was there in one wrist but we still tried the next step which was 2.5mg every other day, at which point the pain was much worse. This has gone on a couple of times now so now trying 7.5mg which seems to be better. The nurse at the clinic helps us over the phone but like you, I've started a diary for mum as I even get confused now I now it's going to be a balancing game over time and I can never remember the times when we were taking what dose. I can also write down what her day has been like, how much pain etc.
I started on 15mg too. A week on that then two at 12.5, two on 10, two on 7.5 etc until after 11 weeks I was taking 2.5 which was half a tablet and then I was finished. I started hydroxychloroquine after about a month, I think I could have started it as soon as I saw that the prednisolone made a difference but I wasn't sure and left it a bit before I phoned my GP and he got the hydroxy organised for me. I do have to say that the prednisolone made me feel like Wonder Woman. it took a little while for the hydroxy to kick in which I knew could happen but it's fine now. Does it take a while for methotrexate to kick in too?
Like you I kept a diary of how I felt, I think it is a very useful thing to do I still do, I actually wrote everything in an empty diary. I'm due to go back for a check up in a couple of weeks and I think it will be useful for when I get there.
I hope your Mum gets sorted out and becomes pain free. I also found a nice soak in a bath - well it used to be very regular soaks but I don't seem to need to do that do often these days - with some magnesium flakes very helpful.
Hello Friut and Nut and thanks so much for replying. We are certainly going to get some mag salts to try though mum can only get down so far on her bath seat. She is going to try a hand soak though! We keep trying with the steroids, up and down etc etc and for sure, mum seems happier on them but does worry about the risks. We have a review in April so that will be the first time we have been back to see the Consultant since Octobber last year. That and the diary should hopefully give the doctor a good reflection of the journey so far.
All best wishes to you for staying as well and pain free as possible.
You can buy small sprays of Better You magnesium. My husband used to use it for his aches and pains. I find it a bit sticky for spraying on my hands although I don't mind it elsewhere. I've heard when you spray it on it can tingle until you get used to it though.
Can well believe your mum is happier on steroids - I was like a very mature Wonder Woman - maybe your mum feels like Super Gran
I think I was just unlucky with the T2 - I know lots of people taking steroids who have been on higher doses and for a lot longer than I was who have had no problems at all.
It may be that the MTX dose is not doing enough to keep the disease under control. The last mg's of prednisolone can take some coming off as the body needs to readjust and it may need to be done even slower. Tiredness can be either the disease or MTX. You need to be guided by rheumy/GP re the steroids or have you the number of the rheumy nurse you can ring for advice - most hospitals have a helpline number you can ring at certain times. Farm
That's interesting Farm and thanks for sharing. I hadn't heard before that those last doses can be a bit hard. Our rheumatoid nurse is very good and has managed the upping and downing of steroids so far. GP keen to get off them but hopefully our Consultant review in April will enable us to look back over the last 6 months to see what patterns there have been and maybe consider options. We are also though, moving county soon so will have to transfer to another hospital and team. That's a bit of a worry but I guess we might even have some different ideas. Just hope that whoever we get values older people as my mum is so wonderful and I want the best I can find for her.
Yes what Fruitandnutcase says is a very good point.
Decreasing oral steroids by tiny amounts over a lengthy period is absolutely the right way to go.
For example 5mg on one day and 2.5mg the next for a week and then the following week alternating 5 mg with two days of 2.5mg then dropping to 2.5mg.
Often people say that it's the lower doses that are so hard to come off. Hopefully your Mums Methotrexate will kick in and subsequently you will manage to help her stop the steroids.
She is very lucky to have such a great daughter!
I had my own good news this week regards oral steroids.
Last year I had explosive onset polyarthritis in multiple joints and went from fit and healthy to completely disabled in a matter of weeks, I'm 48 yrs old.
I was given 40mg of Prednisalone a day as a rescue dose and it worked like a miracle but in return gave me steroid enduced Diabetes, not good at all.
Many tablets a day for that little extra problem!
Now for the great news, in 10 months I have gone from being unable to dress myself and taking 26 pills a day to just one injection of Enbrel a week and 3 other pills a day.
I came back to work this week which I though was going to be an impossibility and my HbA1c test for Diabetes taken in three month intervals has shown my Diabetes to be resolved. Am very happy.
What I want to say is that despite your Mum being 83 and this diagnosis being a shock for your family. With the right treatment she has every chance of keeping going and getting relief from the pain and swelling.
With a lovely engaged daughter like yourself as her advocate between you I have every faith that this doesn't have to be unbearable going forwards.
I hope she has a good diet with plenty of fresh fruit and veg and is taking her Folic Acid ( not on the day of the Mthx)
The tiredness is of course completely understandable not withstanding her being in her 80's.
What a lovely reply. I ended up with steroid induced T2 as well. I got all the warnings about taking prednisolone but nothing was said about diabetes. At the moment I'm only being listed as 'insulin resistant' - for three months in the hope that like you I'll get back to being non diabetic. I'm due an HbA1c in a couple of weeks and I've worked really hard to keep my blood glucose within a good range so I'm hopeful.
You have done so well getting back to work, especially when you thought it wasn't going to happen, best of luck to you too.
I will keep everything crossed for a nice and low HbA1c for you F&nut.
Please post and give us an update.
It's so encouraging to hear from people who suffer in a similar fashion.
I'm in the Middle East currently for a couple of days, my job is somewhat active and I must say I'm feeling a bit creaky,however, I'm so thankful I've come this far. My Rheumy on Friday said I have active Inflamation in my wrists but in general it's all up arrows!
If it's any help I went totally GF when I discovered that I had inflammatory arthritis. I already had several other autoimmune disorders including Graves Disease which is hyperactive thyroid with antibodies, I knew a lot of underactive thyroid sufferers benefited from going GF so I decided to give it a try.
I've had a few blood tests since - I pay for my own - and although some of my antibodies still higher than they should be they have definitely come down quite a bit.
It might be worth seeing if that would help you. I'm not finding it particularly difficult to do, I always cook from scratch though - no ready meals - there are loads of places around these days if you want eat.
I found snacking on the go the most difficult thing to begin with but I just buy a cooked chicken breast and I tend to keep a bag of unsalted nuts and seeds in my handbag, it's just a case of planning.
Mums been on MTX for 6 months and they increased the dose at three month so maybe it does need a little more time. We do tails the steroids off over good lengths of time but maybe it needs to be a little longer too. I'm sorry you had steroid induced diabetes too. It's another thing one just doesn't need! Pleased you have also seen a good deal of progress from the start though and hope that keeps going.
I try very hard to encourage my mum to eat healthily. Hmm. I'm the healthy eater and of course mum likes all the things I don't. If she could, she would live on bread and marmalade, sandwiches and trips to fast food drive ins! I indulge her occasionally as I'm the driver now!
Thanks for the encouraging words about mum making progress at her age. She has always said she intends living until she is 100 and I want to help her do that as I dread the day I'm without her.
Lots of best wishes to you for continued progress too.
Hiya again Paula. First off welcome & I'm so sorry about your mum's diagnosis, she's very fortunate to have such a caring, supportive & proactive daughter.
I'm 55 so your mum has a few years on me but I'm also seropositive, diagnosed in 2008 & considered controlled though I do have my moments! I'm on MTX & alongside my other meds I also take a low dose maintenance steroid (deflazacort not prednisolone) & have tried to taper it, safely with a recommended plan, but I flare before reaching the end, hence remaining on the maintenance dose. I've been on 3mg nearly 4 years & have osteopenia borderline osteoporosis so really want to come off it to preserve my bone density. I've discussed this with another Rheumy, a registrar & my nurse & they're all of the same opinion, I need to get off it. They've not said in so many words but I think it's lazy to keep me on them, they work but at what cost?
Given your mum's age I would do all you can to convince her Rheumy she needs persist at safely tapering her pred, it may be that she needs an increase in the dose of her MTX to control her without the steroids or even another DMARD being added as double therapy but he should have treatment plan in place.
Fatigue can be a sign of disease activity or even the MTX itself. I've been taking it nearly 7 years & even on 6 folic acid weekly I still have less appetite & I'm more tired than normal the day after I inject but it has been a very good med for me. I go for a lie down after lunch & often fall asleep which tells me my body needs that rest. Your mum might find doing the same helpful if she doesn't already.
You give your mum a big (gentle) hug & tell her she's not alone with this unwelcome guest.
Hello Nomoreheels and thanks so much for telling me how it's been for you. I'll share all replies with mum including the big hug which she is delighted with. We are certainly going to try to reduce to as low as possible and I haven't heard about the steroid you are on. I'm wondering if the hospital may try another drug when we go for review in April which will help us get off the steroids soon. It sounds as if your attempts to taper had the same effect though.
Mum does have a nap in the afternoon, always has. However also falls asleep in the chair a lot. On reflection I feel sure she has had RA for a good while before the big flare as she used to complain a lot about muscle ache etc . At least getting he diagnosis meant we are on the right track.
Wishing you well with your issues and I'll keep tuning in and sharin too, anything that might help others.
You sound such a lovely caring daughter.I have been on 10mg steroids a day for over 4 years and have been on several DMARDS and biologics without helping me.I think it's the steroids that keep me walking even thou am in loads pain n struggle each day.
If they are helping your Mum why not keep her on them.She could go backwards in her condition rather than forwards by getting her off them.
Ah thank you so much for your kind words and I'm sorry to hear you still have lots of pain and trouble with walking.
I love my mum very much and we are both only children and lost my Dad 9 years ago now so we are the only two of our little family left (plus our little dogs). So you see, she is very very precious!
Thanks for your story of steroids. I can see that for mum, the days she is in pain show on her face and with her exhaustion. We have a review soon with the hospital so going to discuss it all there too.
Best wishes to you and hopefully a little warmer weather will be helpful to you now the longer daylight hours are coming.
My rheumatologist has been encouraging me to stay on 5mg prednisolone. I have several times tried to come off but a flare (or sometimes another illness) has prompted a restart. The dose reduction from 5mg needs to be done very slowly, I have found, only by 0.5mg every four weeks. One of the side effects of reducing the dose is muscle & joint pain (very confusing) as well as the fatigue and depression.
My sister didn't start Rheumatoid disease until her seventies (whereas I have had it for nearly forty years). She managed to come off the steroids fairly rapidly but she has been much better controlled than me on biologic therapy.
It's such an odd disease and I can see that everyone has such different experiences including family members like you and your sister. It's helpful to hear everyone's different story as it at least reassures you that you are not going mad wondering why you might not be doing or parking progress in the way you had hoped.
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