Have just spoken to the GP re increasing prednisolone, he told me I should have been taking Omeprazole to protect my stomach from prednisolone (I didn’t because I was worried about taking so much medication) and also Hydroxychloroquine (didnt for the same reason) to work with the prednisolone. He said that by taking these I should start to feel better and not to increase prednisolone.
It seems that I am my own worst enemy by not doing what I was advised to.
The rheumatologist has written to him saying that he wants me to get off of the prednisolone and start Methotrexate (can you just do this or do you have to taper the prednisolone?)
I have a telephone consultation with the Rheumatologist on Tuesday so will make a list of bullet points.
I do feel that he should have taken the time to explain his plan to me when I had my f to f consultation with him.🤔
Feeling apprehensive right now. Any positive thoughts would be welcome.
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Rachmaninov2
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Well I've had to taper my pred. For someone who struggled to justify taking a paracetamol before RD, I'm now on 11 lots of medication so I understand how you feel. For me without the meds I could not function and would be in more pain than I am. So im at the stage where I will pretty much take anything.
Tapering off from prednisolone is usually only necessary if you have been on a large dose or been on them for long. Ask for advice.
It had obviously been assumed that you understood the plan, although it is clear that you didn't!
There's a thing called 'safety-netting' which should be done at the end of each consultation which includes establishing that what the consultant has said, that is what has been understood by the patient! If someone doesn't do it with me, I always say "So what is going to happen next is...." and repeat what I think the person had said. It's amazing how often over the years they have looked horrified and we have to go over it all again!
Thank you for your message oldtimer, some very helpful advice which I will remember next time I have a consultation. It does take some time to navigate this whole situation and I have a lot to learn. That is only happening due to the help and advice on here. 💐
Bless you Rachel. I completely understand where you are coming from re having to take lots of medications with me these days taking lots of different ones. We have to do what is right to keep our RA under as much control as possible though and any other health conditions we have. It all takes a bit of getting our heads around though so please never be afraid to ask your health care team as many questions as you need to.
I will be making my list of questions over the weekend for my own rheumatology appointment too. I am two years into my journey with RA now and it can be like a full time job in itself learning about the meds and other services available to help us and finding what works.
Be kind to yourself lovely, it is all new to you, we can’t give any medical advice but we are all here on this great forum to support each other in so many ways.
My only advice lovely is to take the medications that are offered and if you have any concerns at all about the medications do speak to the GP, pharmacist and or rheumatology team. Without the medications the RA is uncontrolled and can cause so many problems. It can take a few months for each medication to work for the RA such as the hydrox chloroquine and methotrexate so patience is key but don’t suffer in pain either lovely. NRAS have lots of fantastic information on their website about the medications and how to get the best out of your appointments etc so if you get chance do have a look or give them a call.
So grateful for the time you have taken to answer my posts Summerrain, yes you are so right it does seem like a full time job, and help on here is crucial in the learning process (like many others have said).
If you start in hydroxychloroquine have a baseline eye test first - the optician will tell you what you need to look out for while taking it - then get tested every year.
I was prescribed prednisone by my rheumy, can’t remember how much but the course lasted for three months and I started tapering as soon as I had my first dose.
Depending on how long and how much you have been taking you might have to reduce gradually.
I’ve had very short courses - when I haven’t had to but the rheumy had me tapering straight away.
I started on hydroxychloroquine just as I was finishing off the steroids so there was a few weeks overlap. I was told that hydroxychloroquine takes a while to kick in.
I had an eye test last week because I have been getting a lot of migraines and auras, plus I needed new glasses. I don’t know if it was a baseline test, should I go back to them re the Hydroxychloroquine?
Maybe that’s why I was meant to start tapering after 1 week, because of the Hydroxychloroquine.
Did you tell the optician you were possibly starting Hydroxychloroquine ? If you didn’t say you were starting they won’t know.
You can ask for an OCT scan. It’s like an x-Ray of the inside of your ur eye. Your u rest your chin in a machine and ok at a red or green dot - can’t remember what colour - it whirs back and forwards to make the picture. The hardest part for me is not blinking because I have incredibly dry eyes. I get my scan done every year at my optician’s and take it to hospital where they scan it onto my records. That way if there are any problems you can see them straight away.
I’ve never had any problems or side effects taking hydroxychloroquine - I’ve been on it for about five years.
No, I didn’t think about it at the time as I was very concerned about the headaches etc.
I think I may have had an OCT scan yesterday when I Picked up my new glasses, had to press a button when flashing marks appeared in different areas of the screen. I didn’t receive a print out of the results. I will contact the optician to clarify.
Thank you for the reassurance regarding hydroxychloroquine.
The test you describe is a visual field test which checks whether you have any "blind spots" in your field of vision.
An OCT scan is slightly different as it takes a photograph/x-ray of the structure of the eye itself. I don't know about other opticians but Specsavers usually offer these for a relatively small additional fee.
When I started hydroxy recently, my consultant said that as long as I made sure I had my eyes tested annually at the opticians then there was no need for any further action at this stage although I understand that if you end up taking hydroxy longer term then more detailed examinations may be necessary further down the line.
I’ve been diagnosed almost 3 years now (it hit me like a sledgehammer, had never been properly ill before) and can definitely relate to comments that managing this condition can feel like a full time job at times ... although i have always worked a full time job too. Two weeks ago I decided to grab a too good to miss redundancy offer and so now at age 58 will be in the very lucky position of just being able to focus on me. I wish I’d been able to do this sooner as my RA had only really been under control for the last 3-4 months since starting a biologic drug.
All this rambling sorry is my way of saying listen closely to the advice the hospital give you and make informed decisions about your medication . I understand that this will challenge some of your long held beliefs about taking medication, it did for me too but I wish I’d listened sooner. This forum is a godsend at times when you feel alone or lost. From my own experience I would expect them to slowly taper your steroids until the methotrexate had had chance to establish itself in your system ... but they will know what’s best for you.
Although it wasn’t quite enough for me on its own, methotrexate and hydroxychloroquine did a great job of helping me to feel normal and pain free again. For some it is enough, everyone is different. Good luck with your journey and remember you are never alone. Xxx
I admire you for continuing to work full time CagneysMum, while trying to deal with this condition. I’m not sure I could have done. Relief that you will be able to focus on you now, you do need to. Glad the biological drug has worked for you.
Not rambling, we are so fortunate to be able to express ourselves on here in the knowledge that our posts will be met with empathy and support.
Thank you for your insight re medications/doctors advice and for your good wishes. Good luck to you too.
Also just to say... at least with RA, the general preference seems to be to try and only prescribe pred as a short-term "fix", so although (for various reasons) some people do find they need to take it for longer, your rheumy will probably be hoping that once the effects of the methotrexate and/or hydroxy kick in, you'll be able to reduce/cut out the pred altogether.
Personally I was absolutely adamant that I didn't want to take the pred (other than as a very last resort) and as a consequence, probably suffered longer than I needed to before the mtx started to take effect but after 8 or 9 weeks, I was definitely seeing considerable improvement in my symptoms and I'm fairly sure that adding the hydroxy made a real difference too.
Good luck. I know it can feel like a scary, bewildering time but hopefully it won't be too long until you can find a regime that works for you and are starting to feel a lot better... xx
Good for you... hopefully if/when the hydroxy (and/or mtx) kicks in, you can cut out the pred altogether.
Also, obviously check with your rheumy, but as far as I am aware, the omeprazole is mostly related to protecting your stomach when taking pred, so you may well find that once you get off the pred, you can give that up too
Getting off Prednislone and onto something like Hydroxychloroquine and/or methotrexate would be the normal approach.
Steroids like Prednislone are great for quickly relieving inflammation and pain but they can have bad long term side effects.
'DMARDS' like Hydroxychloroquine and methotrexate actually work to stop the body attacking your joints and, if you are lucky, can get you back to normal and prevent further damage. Modern practice is to get you on such drugs as soon as possible - hopefully before joints are damaged. However they take time to work (possibly months) so limited doses of steroids are used in the meantime.
I’m on 17.5mg methotrexate and 200mg hydroxychloroquine but it’s still not helping. My hands are very swollen and my ankles have joined in now. Do you think they will up my methotrexate again?
I don't have any qualifications other than having been on methotrexate (only) for ten years!
From personal experience it can take three months for methotrexate to start to work. After two months on 17.5mg my dose was stepped up to 20mg and, shortly after, I started to notice some improvements. Improvements then continued for another year or so - to the point that I had no real problems.
The dose can be quite critical. After five years, I tried reducing to 17.5mg and after a few months started to get some sore joints again.
So, I think there is a fair chance that you will be asked to step up the dose once or twice . The next step might be to try injections. Everyone reacts differently though so if these drugs don't work for you to the Rheumatologist might suggest something else.
If you have a short term "flare" then steroid injections can give a lot of relief - but can't be used long term.
Hi - I've just started hydroxychloroquine (beginning of Oct so not really working though side effects (nausea) are so something's happening! Also on steroids (pred) which are tapering now. Also take lanzoprazole to line stomach (I'm on other meds which require this and it's been doubled too) Interestingly no one told me how to take these meds - neither consultant or hospital pharmacist. GP advised splitting the hydroxy dose on days when I have double (helped a bit) but didn't realise about taking lanzop and hydroxy 4 hours apart until I read up hydroxy on veritas arthritis website - now the nausea has gone (lols it may have gone anyway who knows!)
I'm immensley grateful for the meds and will give anything a go to get my life back to something approaching normal.
This site is quite an inspiration and mine of information - so glad to have found it!
Hello Rambling9, sorry you are suffering nausea from the Hydroxychloroquine, I am taking Omeprazole for lining the stomach, would you think that I should take it 4 hours apart from the Hydroxychloroquine?
The fact that the people on here respond with such care despite many having serious issues themselves, helps enormously with the emotional side of the disease for me. Something which a doctor is not able to help with.
Yes you should - Oral antacids decrease the absorption of oral hydroxychloroquine. Manufacturer advises separate administration by at least 4 hours. bnf.nice.org.uk/interaction...
Hi Rachmaninov2 - I wouldn't like to say in your case - I juggled around with my timings in line with the veritasarthritis website and it seems to have worked thankfully! This is one of the most supportive groups I've come across - lovely people! Take care.
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