I'm quite new to this site, although I have posted once before and quite a few members were kind enough to respond. I really need some advice about my current health situation as I feel things have deteriorated so much and so quickly for me that I simply don't know what to do or where to turn. A brief history, I am a 52 year old female previously very fit and healthy and I was diagnosed with rheumatoid arthritis last October although my symptoms began last April. The joints affected are my left wrist and shoulder and both knees and I was prescribed 15mg weekly of Methotrexate in January. I started with a flare up in the middle of February which is proving to be both debilitating and relentless. I can barely walk as my knees are so painful, stiff and swollen and my left arm is almost useless so that even small tasks are made impossible by nausea inducing levels of pain.
In spite of my physical state I had the Covid vaccine last Wednesday and by Saturday I was even worse, unable to get out of bed without assistance and constantly in pain plus I also had a temperature so I started on 15mg of Prednisolone daily but by Monday when there was no improvement I called my GP. He was concerned about the raised temperature and the level of pain I was in and advised me to attend A&E. They completed a raft of tests and I was able to see a rheumatologist.
On the positive side, they ruled out any obvious causes of infection and seemed to think that the raised temperature was due to a combination of the vaccine and the RA flare up. The rheumatologist examined my joints and has increased the Prednisolone to 20mg daily tapering to 5mg daily over a month. She also recommended the Methotrexate be increased to 20mg weekly but I need to discuss this tomorrow with my consultant. I have to go and have a blood test today as my inflammatory marker was 85 and they want to make sure it's come down.
My issue is this, I've been on the Prednisolone for 5 days now and my joints don't feel any better. I was also given codeine at the hospital which I'm taking twice a day along side paracetamol just so I can get out of bed and go to the loo on my own. Can anyone advise me about when I'm going to feel ANY improvement? Is it unusual for the Prednisolone to take so long to kick in? I realise that no-one has a crystal ball but if anyone can offer me any advice, reassurance or even a sliver of hope then I would really appreciate it as I'm feeling increasingly despondent and worried that this is it...
Thank you.
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SBlu
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On dear, oh dear....you really have got the short straw. So sorry things are so bad for you at the moment.
I can’t offer much more than sympathy, and encouragement to push your consultant hard tomorrow about thinking whether the MTX is working for you, or whether you need a different treatment plan. Has it done anything at 15mg? And have your bloods improved at all? (Before this flare....)
I am someone who responds badly to oral pred, but quickly. So I don’t know whether it is usual to take this long - but if your inflammation levels are fairly high then it has some work to do to control it. And pain lasts after inflammation has calmed down. Hope your blood test today shows something positive!
As I said to you before I had a horrendous time for first 6 months to 1 year, but then improved hugely. So don’t despair yet...
Thank you, for your reply. I’ve really been trying to stay positive but the last few days have been a real struggle. I don’t know about my previous blood results as tomorrow will be my first consultation since I started on the Methotrexate but, so far, I’m pretty underwhelmed by its impact and I’ve had a few side-effects which I would be willing to tolerate if it actually worked.
I had absolutely no idea of the potentially horrendous, life-altering impact this disease could have as most of what I’ve read online tends to emphasise the positive. I’m hoping the Prednisolone, which I appear to be tolerating, will kick in a some point soon and offer some relief. In the meantime I guess I’ll just have to wait and hope.
Thanks again, your reply, sympathy and encouragement are much appreciated.
RA can be an unmercifual beast, it's horrible you are going through this and glad you got to see a rheumatologist in A&E.
I've only ever been on oral steroids once for two weeks starting at 15 and 2nd week went down to 7.5. From what I vaguely remember I didnt start feeling any relief for a few days but I might be wrong. I know they did help, sorry I'm not being the most helpful .
Hopefully tomorrow your consultant will give the go ahead to upping your MTX dose, you're only a couple weeks shy of the 12 week period thats recommend before changing or adding DMARDs if you are still having symptoms.
Do you think you need stronger pain killers to tide you over?
Lay everything out with your consultant tomorrow, you need some help and cant go on like this (I totally understand where you are coming from, I got quite assertive with my rhemy nurse in last appointment and they got my point. I wasn't rude but made it clear I couldn't go on and said I'd done some research into other medications I wanted to explore).
I also found the NRAS helpline awesome at advising with concern to medication and treatment programmes.
If it helps you come on here and get it all out, I find it helps!
Thank you, it’s so helpful to hear from others who have been through a similar experience because even with close family and friends around this can be a very isolating disease.
I was given codeine to take with paracetamol for the pain but, quite honestly, they barely take the edge off. It was certainly good to finally have a face to face with a rheumatologist and she was lovely although she did seem a bit bemused by the lack of improvement in my condition. I will be having a frank conversation with my rheumatologist tomorrow. I think part of the problem is that when I was first diagnosed I though I was going to be able to control the RA through sheer force of will and diet, which looking back from the position I’m in now seems utterly ludicrous. The rheumatologist, was quite happy to go along with this insane delusion, I was very adamant though, but I would have assumed that she might have had enough experience of this disease to gently suggest that things could deteriorate quite quickly and quite aggressively and that we ought perhaps to have a plan B. Anyway, she probably has me marked down as drug averse, which I was, but no longer, I just want to get better.
I will give the NRAS helpline a try. Thanks so much for the advice and for taking the time to reply x
I'm sure we can all look back at what we said at our first consultations and think "what was I saying !).
Its a steep learning curve for sure, I still have no idea ! I just know if I don't ask I don't get and I can't waste weeks waiting for Drs to suggest things, ive researched things and I ask now.
You're never on your own here, hope it goes well tomorrow x
A steep learning curve is absolutely correct. I’m only just beginning to grasp how proactive I actually need to be. Your comments are very kind! I shall keep you posted x
This sounds horrendous. Poor you 🌼 If it’s any comfort at all, my body is very slow to respond to oral prednisolone - sometimes up to 10 days to see any kind of improvement.
I must also say that oral pred has NEVER touched my knee inflammation - at any dose. The only thing that has worked there is a steroid injection straight into the joint (plus aspiration of fluid).
As others have said, it’s definitely time to question the consultant as to whether the MTX is working - and to at least have a discussion around other options.
That’s very interesting about the steroids and your knees. I’ve noticed a very slight improvement in my wrist, it’s still so painful but not quite as swollen however my knees are exactly the same or maybe even a bit worse. Huge, stiff, ugly, sore and hulking! The rheumatologist I saw on Monday did mention aspirating one of my knees which I’m going to mention tomorrow but I shall also mention steroid injections directly into the knee joints.
Thank you for this really useful information and for taking the time to reply x
Yes, my knees would often continue to balloon...even while on oral steroids. It can be excruciating. In January, I couldn’t even bend my knees enough to get downstairs. Normally they will inject a steroid into the knee after aspirating it. Fingers crossed for you x
I haven’t been able to do stairs for months. Luckily we live in a ground floor flat but I can barely clamber into our shower without assistance and have to find the slope on kerbs (that was when I could still make it outside). This is so helpful. Thank you. And I hope things continue to improve for you x
I had to have my knees aspirated a few times in the first year, and they then usually do inject steroids afterwards. It really helped as I could feel fluid sloshing around inside the balloons I used to call my knees. But do remember to rest your knees afterwards!
This is a self-service disease. Don’t ask - don’t get! So be politely assertive...
At the height of my diagnosis flare that had been going on for about 4 months, it took me almost a week to see any real benefit from pred, but had helped massively by the end of week 2, reducing most of the swelling and enabling me to actually get up and down out of the chair, cut my own food up, have some basic degree of functioning. The joint pain when I started on it was so bad I couldn’t sleep, and could have quite easily bawled my eyes out a lot of the time, but that also decreased a lot somewhere between day 5 and day 10. With pred since then, I’ve found improvement has been quicker, usually within 2 or 3 days, but the symptoms haven’t been as severe at the point I started it, nor left untreated for months on end. When you’ve been flaring for quite a while, my understanding is that it can take a little while to get the inflammation dampened down even with steroids.
All DMARDs usually (often) take time. They tend to say 12 weeks for effect as a ballpark figure, however that doesn’t mean you need to suffer for 12 weeks, or that you’re necessarily on the right meds. I went onto mtx at diagnosis, but got zero benefit in so far as I couldn’t wean down the pred without the symptoms re-emerging, never mind try and come off it. They put the dose up to 20 at week 10, but it was only when a second med was added at week 16 or so that I got enough improvement to come off the steroids. Ultimately, after being on it for 15 months, we determined mtx just isn’t useful in my case, so I came off it at the end of Feb. Talk to your consultant about how to achieve relief now (not had them myself, but I know from other members that steroid injections into joints can be really helpful), but also what the longer term plan is, like how long before they’ll consider another dose increase or adding another DMARD in if going up to 20mg of the mtx doesn’t work. Sometimes knowing what the plan and timescales is can be helpful because you’re not just sat there wondering ‘how long do I have to put up with this?’.
Our early RA experience sounds quite similar, I’ve been very strong all the way through this, trying to reassure everyone that I’ll come good soon but the last three days have been absolutely awful, it’s not just the constant pain and inability to perform basic everyday tasks (I can’t cut my own food either), it’s the fear that things may just not improve and the subsequent loss of hope that’s so distressing. For the first time since diagnosis I’ve cried almost constantly. Anyway, I do hope that the steroids will kick in for me soon, I hadn’t considered that there may be a link between length of flare and the time is takes for them to become effective but it does make sense. And yes, I will try and discuss a plan B with my consultant as a timeframe would most certainly be useful.
Great advice. Thanks so much for taking the time to reply.
Eurgh. You’re in a pickle and it’s a horrid time. My personal journey was nothing to severe in the space of three weeks and whatever I did, nothing improved it. So I understand how you’re feeling. The madness of not being able to go up or down one step, cant hold anything and that burning pain that you think will never ever stop.
The good news is it will eventually. But it is a long haul and quite brutal as the drugs combos are all trial and error.
Have you tried wearing fingerless compression gloves? Dr Arthritis on Amazon sell them and the alleviate the pain in the wrist and give it some support. I wandered around for about 18 months emulating Michael Jackson!
Honestly, I thought I’d never be me again, but I am. Be very factual with your nurse and doctor. Push hard for biologics if you can (fib a bit if necessary and say it’s in lots of joints 😊). This next bit is probably not going to make you feel any better but it took two years for me testing stuff, until finally I went on Benepali and everything changed within three weeks. I’ve been taking biologics now for almost three years and I have my life back. Yes, it’s a bit different, but still run a business, still have a great social life (well, I did!), I’m not going to run any marathons, but wouldn’t have anyway.
You will be fine. Perhaps not this week though ❣️❣️
My rheumatologist has agreed a new medication plan, involving continuing the Methotrexate but at 20mg weekly and taking Sulfasalazine. After 6 weeks if there's no improvement then she's going to try me on a biologic. I feel like I'm never going to be me again but I'm really trying to focus on a time when I will start to feel a bit more normal, though for now I'd be happy just to be able to have a quick walk outside or cook dinner for my family.
I'm pleased to hear your story has a positive outcome. Thank you so much for your good wishes and advice x
You will be you again. It may be a slightly different you, but you certainly won’t be as you are now. Oh yes, the sulfasalazine. I remember my stint on that. Nothing 🙄🙄 I stopped taking it this time last year as I was fed up with so many meds.
It’s going to be a long haul and a pretty uncomfortable one, but you will find what works for you in the end.
The consultant explained that she needs to try me on at least one other drug before we can try the Biologic. And who knows, it may work for me? I didn’t even used to like to take a paracetamol when I had a cold and now I’m rattling with all the meds. How times change...
Thank you for your kind words. Have a lovely Easter too 🐣
Hahaha. I absolutely think people should ifnits the difference between being in pain all your life or not and having a life. My consultant did as I was borderline. If that's what it takes you need to do what it takes. 🤷♀️ But thank you for your comment.
I usually find it takes about a week before oral steroids help me. Everybody is different, some people notice a difference straight away and unfortunately there's others like us who have to wait. Fingers crossed you get some relief soon.
It’s reassuring to know that the steroids do take longer to work in some cases. I just needed a bit of hope which coming on this site has given me. Thank you.
Its really horrible hearing the pain your suffering. Reminds me of how poorly we get when we have a major flare. You certainly need stronger painkillers, help and give some relief while you find the right drugs that work. Don't hold back tell them how bad and difficult a time your having.Hope you get some help.
Thank you, I appreciate your kind words. I’ll certainly do my best to get the help I need and the advice of everyone who has taken the time to respond to me today has given me some hope which is what I really needed.
I’m really sorry to hear you are having such a terrible time at the moment. It was much the same for me in the early days and I was having steroid injections as well as Prednisolone through the really bad stages until they found a drug that worked well for me.There’s some great advice here from fellow sufferers and you do really have to be assertive with your rheumatologist tomorrow as others have said. Describe how you feel on your worst days and don’t hold back and definitely ask for stronger painkillers. I found Zapain good for occasional use (it has a higher codeine content with paracetamol than the over the counter cocodamol) and it’s prescription only.
I do hope it goes well for you tomorrow. Let us know how you get on.
Thank you. I think because I was in such denial about the seriousness of this illness and just kept hoping it would all go away that perhaps I didn’t explain to my rheumatologist effectively enough how much I have been affected. I’ll make a note of Zapain. Your advice is much appreciated.
Just wanted to add my good wishes for tomorrow. As everyone has said, be clear about how much you're struggling and hopefully you'll be given suitable interim pain relief as well as long-term medication.
Sadly, it can take time to find the right medication regime but meanwhile, don't hold back when speaking to your team and if things don't improve quickly, get in touch with them and let them know. On several occasions I've rung the nurse helpline to say that I'm concerned and they've always been helpful even when I haven't been on the new medication/dose for the full 12 weeks which is often quoted. As one of them said to me (when I was apologising for bothering them!) if we don't inform our team how we're doing, they won't know. I've learnt (mostly because of encouragement from folks here) not to wait to be helped but to ask if there's anything that can be done and although it doesn't come naturally, it really does work.
Unfortunately, my rheumatology ‘team’ are virtually impossible to get hold of unless you have a telephone consultation which needs to be booked weeks in advance. I spent 4 days trying to get hold of someone in December and in the end I was very rudely told by one of their receptionists to go to A&E (I will be getting frequent flyer miles from them soon), this was not even recorded in my notes. Consequently, I don’t have much faith in them. However, I’m feeling a little more bullish now as I’m very unhappy with the way I’ve been treated and I consider myself to be a reasonably articulate and intelligent person (also pushy when needs be) with a strong support network surrounding me. So if I have floundered then goodness knows how others are suffering. I guess in the same way that this disease affects us all differently, the level of care provided differs greatly also. That’s why this network is so useful!
Thank you for taking the time to reply to me. I really appreciate your advice and good wishes.
Hope you feel better soon xx it’s awful when you can’t move and in pain x I have had Prednisolone quite a few times over the past year but when I was at my worst last March I had 20 mg and tapered down xx I was on crutches at the time and it was at least 7’days before I could walk a few steps with out hem xx I’m also on methotrexate and don’t feel it was working well and have just had hydroxychlorine added in x for the first time in a year I am starting to feel a bit better in myself x. So stick with it and contact rheumatology if you need to they are there to help x and I always say on here everyone is marvellous and really helpful xx Younwont feel quite as alone that’s for sure xxx keep smiling x
Thank you so much for your reply! I feel so grateful that people on this site are willing to share their experiences in order to help others, it has given me so much hope and help which is exactly what I needed today. In all honesty, I don’t feel like my rheumatology department are trying very hard to help, I feel like they are swamped and are trying to get me off the phone as quickly as possible and if there is any issue outside of the allotted slots then they really don’t appear to want to know. Maybe I am just unlucky in that respect. However, I will persevere.
I hope you continue to improve, what a hard slog it is for us all and I really will try to keep smiling. A lovely message. Thank you xx
Hi, I really feel for you . I was very fortunate that I was diagnosed and treated so quickly and that I had steroids given to me by my GP before id seen the consultant . Once there I also had a steroid injection which worked wonders.. It must be awful when they don’t work so quickly for everyone .
I took zapain in the beginning too just so I could move which really helped .
Good luck to you , it will get better than it is now .
It’s amazing how different everyone’s experience with treatment seems to be. Steroids were never even mentioned to me by my rheumatologist, they only came up when I went to A&E and my GP gave me absolutely no advice whatsoever, whereas some GPS seem to be quite proactive.
Thank you for your kind words. I really hope I improve as the alternative is really not worth contemplating.
Hi SBlu I feel your pain, when u see ur consultant ask would about a steroid injection. My GP gave me my first one when he saw how much pain I was in (similar to yours) it worked after a couple of hours. I was then given 20 mg MTX. After meeting my consultant a month later she gave me another steroid injection and referred me for biologicals which took another month and a half. They finally gave me my life back. The steroid injections worked however I did get a moon face but didn’t care as they took the pain away. My consultant and RA nurse were super, hopefully yours will be resolved 👍
I spoke with my consultant today she was resistant to the idea of steroids generally. She wants me to try Sulfasalazine in conjunction with Methotrexate for 6 weeks and if that doesn't work then we'll move to a Biologic. I'm very pleased to hear you had a positive outcome. Thanks for taking the time to reply.
She doesn't feel it's necessary at this time, I'm afraid I have absolutely no faith in her and generally find her very vague. Looking back over the consultation she dismissed most of what I said or asked about and clearly had her own agenda that she wanted to follow. When we first spoke she thought only one joint was affected, she didn't appear to believe that the steroids weren't making a difference (she referenced this 3 times with incredulity in her voice), she had to ask me when she'd originally prescribed the Methotrexate and I just got the impression that she doesn't believe I'm as bad as I am. Admittedly, I did get a bit emphatic when she thought only one joint was involved and I felt it was necessary to describe in detail exactly how little I can currently do. I also strongly suspect that she had barely looked at my notes before she contacted me. When I mentioned pain care she told me to contact my GP if it gets any worse. She just kept repeating that the main thing is to bring the RA under control, and then presumably everything will fall into place, in one respect she's correct but it doesn't really help me right now. Also, she gave me a lecture about the harm steroids can do and almost snorted with derision when I suggested the possibility of an injection. Once we'd agreed the new plan she rushed me off the phone and didn't bother to ask if there was anything else I wanted to discuss. Overall, it was not great.
Sorry to read all your posts about your unhelpful rheumy but I just wanted to mention that adding Sulfasalazine to my existing DMARDS (Methotrexate and Hydroxychloroquine) has really worked well for me so I really hope that you find the same. Her plan to move on to biologics after six weeks is encouraging too; maybe she's just got a bad "bedside manner" as it sounds as if she is trying to improve things quickly for you 🤔 Such a shame that she's made you feel that it's been such hard work getting over your point of view though 😕
Yes, I was quite surprised that she suggested the biologic so readily, she was probably trying to shut me up as I kept insisting on telling her how awful I’ve felt and perhaps I’m being a bit unfair on her. Anyway, I’m very happy to have some new meds on the horizon and I finally, and for the first time in ages, feel a little bit better. Not sparkling, not fabulous and nowhere near normal but better, a tiny bit, which is a start...! 🙂
I'm so sorry to hear about your situation. As usual lots of people here have given great advice. We've all been there and it's always good to know that you're not alone in this. I would ask your rheumatologist about taking Naproxen for pain relief, it's the only thing that works for me. You'll need to take omeprazole for stomach protection with it. Also, write down everything you want to know so that you get all your questions answered by your rheumatologist.Good luck!
Sorry to hear your despair - reading your story brings back memories. Right now sounds like you are in the eye of the storm, where RA is testing you - it is relentless.
I want to assure you from someone who could not walk or run, go up and downstairs, could no longer tiptoe due to damage to my tendons - excruciating pain enveloped my everyday - my inflammatory markers were at 200! My RA was a wrecking ball wreaking havoc.
I want to reassure you that today I am happy and blessed. I am almost pain-free. I can walk, run and tiptoe 😊 life will never be 100%, but I am so grateful to be at, say, 97% - I now shed tears of joy.
You will get better; it can take time, resilience and patience I promise you that - feel free to reach out at any time. Take care, Hessie x
It's so helpful and uplifting even to hear from others who have been in a similar, or worse, situation to mine and who have improved enough to get back to a normal life. Thanks you so much for your positive post and kind words x
Hi - I had to go through 8 biologics so never give up, I landed on Orencia abatacept 125mg weekly, grateful things got better. Meds, good eating, less stress, exercise 😊 wishing you well !
Hi Sblu, I’m so sorry to read about how badly you are suffering right now. Lots of good advice already so just wanted to add my sympathy and also to share a couple of personal experiences about steroid tablets. Firstly, when I have had particularly bad flares I have found that it has taken anything up to 2 weeks at 20mg before the pain has started to shift. Also, I find that prednisolone tablets can make me feel more emotional, and quite vulnerable really, so some of the way that you have been feeling over the last few days could be down to this. Finally, as you will probably have seen from posts on the site over the last few weeks I think it’s fair to say that many of us have seen a worsening of RA symptoms after the COvid jab (although still glad I had it!) so your experience fits with the general pattern of things, but given how bad you were before the jab obviously this has made things particularly awful for you. I had the AZ jab and my RA seemed to flare for about two weeks afterwards, but now seems to be slowly settling a little, so hopefully you won’t feel this bad for too long. Sending a big virtual hug, keep us posted won’t you? 🤗 xx
I spoke to my consultant today and she was incredulous that the steroids hadn't worked yet, asked me about it 3 times and I was left feeling as though she didn't believe me. She really does have no bedside manner at all, truly appalling. So it's good to know I'm not the only person that this has happened to. I have been a tad over-emotional these last few days, it's been a terrible time, I do feel a lot calmer and reassured having heard similar stories from others in a comparable situation who are now able to lead normal lives. Hopefully things will improve physically for me soon. Thank you so much for your response and very kind words x
Oh dear, yes I know the feeling of not being believed - nothing more frustrating and upsetting, I think consultants sometimes struggle to see us as complex individuals who may not always have the ‘textbook’ response to something they prescribe. And it doesn’t sound to me like you have been over- emotional at all, only human! Have your inflammatory markers come down at all, or did the consultant not have those results yet? Xx
The blood test results hadn't come back, but they were referenced so they should contact me if there's still an issue. I have to say I'm think I'm finally starting to feel a little better, still hobbling around but not having to breath through the pain every time I attempt to get in or out of bed. Whoop whoop xx
That’s good, I’ll keep fingers crossed at this end. If it makes you feel any better, I have discovered today that the pain in my rightknee isn’t as bad when walking if I lift my leg right up when taking a step so I’m currently moving round the house like something out of Monty Python’s Ministry of Silly Walks! It’s a good job we still have our sense of humour! 😂😂
😂 I can so relate, gallows humour is really important with the indignity of what we sometimes have to put up with. For now, I just do whatever’s the least uncomfortable physically even though I’m very aware of how odd it may look at times. My family (hubby and daughter) are very understanding 😊
I've only been given oral prednisolone a couple of times and they have worked well for me. I'm very aware that it opens you up to the possibility of catching viruses and for that reason my rheumatologist is refusing point blank to prescribe the oral ones, instead they took me into clinic and gave me a corticosteroid injection into both knees, which worked instantly, I mean they better by the time I was getting into the car. I think if it's not helping you should continue contacting them, call the helpline, there are many things they can try to get you out of that pain and into something that you can cope with. If the Pred hasn't kicked in at 5 days I don't think you'll gain much from it, but it's still important that it's tapered down, don't just stop taking it.
I feel it's done very little and considering the current risks I kind of wish I hadn't started taking it. Anyway, others on here have said it can take a little longer so perhaps that will be the case with me. Thank you for taking the time to reply.
These diseases are so unpredictable plus the types of symptoms and their severity seem to vary so much from person to person, making treating them a difficult task. For me, the past few months have certainly proved to be challenging on many levels and although I've tried to stay positive I'm finding it increasingly difficult as my physical capabilities diminish day by day. As you say, I'm sure the vaccine played it's small part in my current state but I was going downhill anyway. Thank you for taking the time to reply and for your kind words x
Hi - just a quick reply - RA is - as others have said - a beast that can be difficult to tame. I've had it since 1995 and I'm now 69. Its course is not predictable and everyone has it differently - BUT! - try and take some comfort that there are some excellent medications around now and there will be a steady stream of new ones as the years go by. I have no idea why you're not noticing an improvement after increasing the prednisolone, sorry! but you sound like you have a good head on your shoulders and I encourage you to keep the communication channels with your GP and rheumatology service open, don't ever wait in pain if there are no significant changes. Upping the MTX could really help - but I strongly recommend that a) you inform yourself on the more advanced and targeted RA drugs and b) then insist that you have a proper conversation with a rheumatologist about adding these to the MTX as early as possible. Getting to grips with RA in the early stages of active disease is crucial to putting the breaks on progressive joint damage. In the meantime, taking a strong anti-inflammatory drug such as diclofenac ( volterol) could help for a few days - but GPs can be reluctant to prescribe it as it can irritate your stomach. Taken for few days, always taken with food and maybe stomach protection tablets as well, maybe helpful as your RA is certainly going through a very active stage. Ask your GP. I sympathise, in a similar state- but years ago - I was given intravenous steroids a couple of times, as a hospital day patient, but I don't know if this happens these days - it certainly gave relief.
Take heart - in time things will get better, keep yourself informed about this disease - it's causes and treatment- and keep on the phone to your health caregivers - even if you think you're being a nuisance. Even in these covid times, you deserve good care now. I wish you all the best
Wise words. I shall certainly follow your advice about keeping on top of the health caregivers, as I'm singularly underwhelmed at the substandard advice/care that has been meted out to me so far, I'm really not worried about being a nuisance but I am very very worried about never being able to walk again. Thank you for your good wishes.
Three more bits of advice - 1)find out the name of your consultant's secretary - she ( probably not a he!) will have an extension and may not pick but you should be able to leave a message and ask she rings you back. She can email and/or speak to your consultant on your behalf and that is usually the quickest way to get your consultant's attention and a response to your needs. See if you can build a good relationship with the secretary as this can pay off over time. 2) Write to your consultant ( letter not email) and give copy it to your GP. Thank her for her phone call and say you're writing because you want to make sure you understood everything that was covered during the call. Clearly summarise the issues covered, but don't get into any opinions or criticism. Then put in the letter a clear description of ALL the symptoms you are currently experiencing, and how your daily life is affected - keep it simple. This is for the record, and your letter will be kept in your notes , 3) If, over time, your consultant continues to let you down, I urge you to consider switching to a different one. You are allowed to do this. Your GP can facilitate this, and can suggest a different one. Or - better - see if you can get a personal recommendation of a different rheumatologist by letting your friends /contacts know that's what you're looking for. Rheumatologists are NOT all the same and they do not all have the same clinical opinions. Having said that, I suspect yours is following NICE guidelines ( easy to look up) as she must, and try other DMARDs before prescribing ( the more expensive) biologics. You WILL walk again - keep as well as you can now with good nutrition, move gently intermittently and rest a lot too. Keep finding stuff out, as you are already doing. Feeling empowered is one of the best things you can do to keeping despair at bay!
In December, not long after I was diagnosed I had my second flare up. Just as now I could barely walk or function and so I attempted to contact my rheumatologist, as she had advised during my initial telephone consultation. I spoke with her secretary on numerous occasions over a period of 4 days and each time I was told that my consultant had been informed about my calls and that she would contact me as and when she could. I heard nothing. During the final call the secretary told me there was nothing she could do and advised, rather rudely, that if I felt that bad to go to A&E, which I did. I later found out that not one of my many phone calls had even been recorded on the system, which was a bit foolish as I have a record of all the calls on my phone. When I found myself in a dreadful state this Monday and while waiting for a callback from my GP, I decided to attempt to contact the rheumatologist again. Not one of the phone lines (and there are many) was operational in terms of actually taking calls. There was a voicemail requesting that a message be left or an email address to contact, which I did. My email wasn’t rude but it was strongly worded and this time I did get a reply...telling me to go to A&E. It came a bit late though as I was already there, sent by my GP.
After my telephone conversation with the consultant today, I realised I needed clarification on something which, as I’d been so rushed, I’d overlooked. I immediately sent a very short polite email that required a one or two word answer, I’m still waiting to hear back.
Your advice about sending a follow up letter to my consultant and a copy to my GP is excellent and I’ll certainly be doing that tomorrow.
I’m going to see how things go with the new drug regime, I realise there is a protocol my consultant needs to follow before I can be prescribed a Biologic, I’m just happy it’s in the pipeline. If any of the new drugs work sufficiently then presumably my dealings with the rheumatologist will be limited anyway. However, if I have to continue to require regular contact then I’ll certainly consider trying to find someone else. One of my closest friends is a doctor, although unfortunately this is not her field of speciality, and she warned me that the hospital my rheumatologist is linked to has a poor reputation, but it’s very close to my home which I felt would be convenient and I really had no idea what I was getting into at that stage. I’m certainly beginning to understand now.
Thank you heaps for taking the time to give me all this really great advice. Much appreciated!
a post-script - one tip I wish I'd known during the years I was having major flare-ups - always keep yourself very well hydrated, but especially when your joints are inflamed, and in hot weather - it really does help. As others have said, you are on a journey now with the aim of discovering how to manage your condition, and there are no quick fixes for most people with RA - but you will get there. Good luck
Hi there, i’m so sorry to hear the state you’re in. RA is a complex disease and managing it is quite a lengthy one (from my experience). From reading what you have put, I would suggest that initially your consultant should consider giving you either a steroid injection as the prednisolone sounds like it isn’t touching your symptoms. It also sounds to me that you need to be a more advanced medication.
I used to be a firefighter and my Rheumy was keen to get me back fit for duty asap so I was put on some strong meds pretty much straight away. I find the key to managing rheumatoid arthritis is to constantly nag your consultant/rheumatologist, as if you don’t, they may trial you on the weakest form of tablets and you won’t see a great improvement necessarily. I used to always be on the phone as soon as I flared and know my body so well that I’ve gone through so many different medications to get to the one that suits me and doesn’t give me nasty side-effects.
I was very, very poorly when first diagnosed. Through research, changing my diet massively, finally stopping drinking alcohol, and incorporating a more holistic and mindful approach to life, I’m pretty much symptom-free now even when I don’t take my medication as regularly as I should. I’m soon to return to emergency services so I’m going to keep taking my medication even though I’ve had periods where I’ve been symptom-free and in remission and not taking medication. I wish you all the best with your journey, from my perspective, it does get easier as time passes
Unfortunately, my rheumatologist is largely uncontactable outside of the designated telephone consultation times On the 2 occasions I've attempted to contact her or anyone from the department for advice I've been directed to A&E by a clerical member of staff. Having spoken to my consultant today we've agreed on another medication plan and if that doesn't work in 6 weeks, then she's going to put me on a biologic. It sounds like, in common with so many on here, that you've suffered immeasurably as a result of this awful disease but it's so positive to hear that you have ultimately come through it and will be able to resume such a wonderful and worthwhile career. Thank you so much for your good wishes and wise words.
Sorry to hear the tale of woe. I guess you'll probably have had your consultation by now and hope you've been given better pain relief, maybe had your knees aspirated, and been given some sort of plan for the future.
I know it's hard to believe but the misery of a terrible flare will eventually pass, and you'll come out the other side with your RA better controlled. Just try to be kind to yourself and not worry when you feel at your worst. Things will get better....
Thank you. I'm really trying to focus on this phase passing and hopefully some kind of remission at some point in, hopefully, the not too distant future.
I don't take Methotrexate as it seems to be the first drug they try everyone with (I was also 51 when my RA started in my wrists, hands and feet), now ten years on and with several drugs tried, I have a new bio drug and finally no more pain... or very rarely. It may take a while to get it right but your RA nurse needs to know. My point was going to be that the same nurse told me no prednisolone or steroids with the Covid vaccination and reading on lots have been told the same for at least a week before and after. I do wish you luck in getting your meds right.
My rheumatology team are woefully poor at communication. It seems you get your allotted time for a telephone consultation every few weeks/months and outside of that time they can’t be reached and expect you to look after yourself or if you’re really bad to go to A&E. There’s quite a lot of mixed information online about the vaccine and steroids, I’ve been given absolutely no other guidance.
Thank you for your good wishes and for taking the time to reply.
My heart goes out to you, it really does and I’m so sorry you’re feeling this way 😔It takes me back to 2 years ago when I couldn’t walk, I was told my ‘urgent’ referral to Rheumatology would be a 3 months wait! I am separated and my son is at Uni, so I live on my own - I was absolutely desperate as my car had broken down and I remember shuffling 35 minutes walk back and fore to my GP. I was in so much pain, every joint was burning, even my jaw. Eventually my GP phoned Rheumatology and they said based on my bloods and my GP’s description of my swollen joints it was almost certainly RA, so they said to tide me over for her to prescribe me Pred. Well, it took a week, but I felt so much better, it enabled me to go back to work again (I’m now on Mthx 10mg). So I think I’m one of the lucky ones it worked very fast, but I have a friend who has Lupus, she struggles with swollen joints and is on 30mg of Pred a day, so maybe they can increase it for you to see if they can get it under control? I do hope so.
It’s a terrible disease, sometimes I look back on those dark days when I thought the pain would never go away, nobody can truly understand unless you have it yourself.
As an aside, I’m also now having investigations for possible Crohn’s disease, and I’m having the run around from the Consultant at the hospital who can’t be sure if this is what I have, so won’t prescribe me anything. Meanwhile a year into this I still have pain, passing blood etc and was told by him to pop a few Paracetamol 🤷♀️😡 so at the moment I don’t really have any faith in the lot of them.
Take care and I hope you find a medication plan to help you, keep us updated of your progress won’t you. Xx
I can honestly say I don’t know how I would have coped without my hubby, particularly these last few weeks, and I get upset when I think of others in my position who will just have to get by with limited support (particularly now) and wonder how they manage. Your experience about having to shuffle in great pain to see your GP, that’s so awful!
This is a terrible disease and relentless, and because it’s so different for everyone no-one can even tell you accurately what to expect. I really had no idea! Getting the picture very quickly now though...
I truly hope you get your ongoing health issues sorted out. It seems very unfair to have to suffer with another illness when you already have RA 😞 Let’s hope your consultant can get his act together and get you the meds you need.
I just wanted to say being on my own with my children grown up and living away from home, makes it all seem even worse when you have a flare-up. I send you a hug for those times too. It has taken great strength to deal with answerphone systems and straight and sometimes very off consultants when you are on your own and in pain. Take Care 🤗
Oh absolutely I agree, but it makes us stronger as people I think. I rely on my friends a lot, they are family to me, and I have my beautiful giant dog 💕who has gave me something to love and care for when my son went away to Uni. But being on your own with an illness like ours is horrible, as you never know when the next flare is around the corner, but thank goodness I’ve pretty much been in remission for a long while now, I hope you are too. 😊👍
Hello Chockyuk,Thank you yes I only get occasional flare-ups as my RA has been controlled much better in the last year. I have great friends too and a sweet dog and cat to look after, with a tiny little job, life is full too as I get tired by the evenings. Take Care and reply in a private message anytime
I feel your pain, RA can be debilitating and demoralizing, but hung in there,there will be better days.
When I get extreme painful flare-ups, i have recently tried CBD oil, and I am finding that it reduces the inflammation. You might want to give that a try.
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