My dad is at the beginning of his journey with RA. He was in so much pain and the waiting to be referred was to much so on Saturday we went and paid to see a consultant. He gave him a steroid injection, which has taken the inflammation down so at them minute he is pain free. Now he can't keep his eyes open and he has fever symptoms, sweating & then freezing, my mum is overwhelmed with his condition and doesn't now what to do. I have ordered the free booklets from NRAS which are fantastic and have helped me to understand the disease. We are waiting to be referred so dad is not on any medication yet but will he suffer with fever symptoms all the time - and he can't stay awake - is this normal too and will this last until he gets meds sorted? Thank you in advance.
Help & advise: My dad is at the beginning of his... - NRAS
Help & advise
I'm afraid that I can't help with your specific question but I'd suggest ringing the NRAS helpline 😉
Hello Sorry to hear that your Dad is struggling There can be fatigue and flu like symptomswith a big flare up. If he definitely has R A he will need some Disease modifying drugs and they do take time to kick in but once they do he should be a whole lot better Read the booklets and make sure you ask the consultant at of questions!
Your dad has my sympathy. I started with rheumatoid arthritis in 2011 aged 45 following a road traffic accident, but I didn't get a firm diagnosis for 2 years and then it took another year to find medication that helped. For much of those 3 years I was in agony with joint pain and swelling everywhere. RA affects men worse than women. Fatigue was and still is a big problem. Lack of sleep for weeks and months at a time destroyed my mental health and I had some dark thoughts. Eventually relief came when I was put on biologic medication which is expensive to the NHS. That's one reason why it took so long to get it - they try you on the cheaper drugs first. For some of us the cheaper drugs do work, but not in my case.
The biologic drug was like a godsend. Most of us will find a drug that works. RA is life-changing. I had to give up work as a teacher and still I can't work at all. I still have very bad days and for large parts of most days I still experience significant amounts of stiffness, pain and fatigue, but at least I can now tolerate all of that and I lead a happy life, though a poorer one. There are benefits available such as UC and PIP. Fortunately, I was quite well insured. A lot of us can go back to work, I just have a very aggressive form of the illness.
14 years down the road I can tell you from experience that doctors tend to tell you very little. Fortunately, the people at NRAS are brilliant and will help greatly.
Good luck to your dad. In my experience the steroid will only last for a few weeks at best. Get referred to a rheumatologist ASAP. Don't be surprised though if it takes a long time to get a diagnosis. Average used to be 18 months, even though it might seem obvious that it's some type of inflammatory arthritis. In my time, a firm diagnosis was only given when certain blood markers appeared, which was 2 years after my joints became painful and swollen. There will be light at the end of the tunnel.
Thank you so much for your reply. My Dad already has some other conditions, he was diagnoses with auto immune hepatitis 2years ago (that took 4years to diagnose resulting in sorosis of the liver) - he has already had some drugs that suppress the immune system and they didn't agree with him. I did a little research before we saw the private consultant on Saturday and I mentioned to biologic drugs and due to Dads already existing health issues he has written a letter advising that Dad go on these without delay. I am just trying to make sense of it all and the booklets from NRAS have been so helpful. I'm trying to understand what he is going through and making sure we can get him the correct meds asap - he looks dreadful and I feel helpless. Thank you for confirming that his sleep will be disturbed, we are just worried about the fever he is now experiencing. Thank fully after having the steroid injection on Saturday he had he first night sleep in weeks. I just hope a referral will be soon to help the disease start to go into remission - that is the plan and I know it will take a while. Talking with someone who has knowledge and understanding is a comfort I can pass onto my Dad.
You're welcome. The people on the NRAS helpline are brilliant. Don't just rely on their literature. About 700,000 people in the UK have RA. Only about 10% of that number are men. Look at following an anti-inflammatory diet. It might help, it might not. It certainly won't do any harm and at least it might make your dad feel like he's doing something to battle the illness. Rest when he has to and gentle exercise when he can, if he can. I always saw the pain as a challenge and wouldn't let it beat me. Easier said than done though. For me, it was the lack of sleep long term that depressed me the most. Nights were very lonely and long and I felt guilty about keeping my wife awake. I'd lay awake, in too much pain to sleep until 4 or 5am when pure exhaustion meant maybe an hours sleep if I was lucky. I used to dread nightime. During the day it was a lot easier to find distractions. In addition, during the night our body temperature goes down slightly and this triggers an increase in inflammation, so pain is often worse overnight. No prescribed painkillers could help me. It might be different for your dad though, but be careful about addiction.
I've no knowledge about fever. I've never experienced that. If he has an infection that will certainly make his RA symptoms much worse. Over winter I socialise as little as possible to avoid picking up bugs. A simple cold makes my RA flare up very badly.
Sorry, but RA does not affect men worse than women!!!
Don't forget he can see his GP aswell to check about fever if necessary. I'd ask them to chase the referral.But he has one big thing going for him...YOU. What a truly loving supportive person he has in you. But, you have some time for yourself too!
hi
I’ve had RA for 5 years now and what I can tell you in my experience is Fatigue is a normal part of the disease. My advice would be to contact your local hospital and ask to be put through to Rheumatology and see if they can advise you on how long your father needs to to wait for an appointment. Once he does start treatment thing should improve but it is a bit of a trial to work out what medications work best for him.
You also asked about sweating and freezing. I’m not sure how much help I can be here but myself I find that I am much more sensitive to cold than I was before Arthritis and believe it’s very common for people with RA. Wishing you luck.
Might be an idea to get the fever checked out by GP in case it’s something else lurking. That would also give you/hun an opportunity to mention the referral and ask the GP to chase it up.
It helps to be proactive because unfortunately with NHS resources stretched it’s easy for things to get missed or overlooked.
Also, with his liver situation, injectable drugs might be a better option than tablets.
Hi
I'm sorry to hear about your dad. It is normal to have fevers and sweats when in a flare up. As your dad isn't on any medication there is nothing to suppress it at the moment. However, I would keep ringing up saying you urgently need the appointment and could you have the next available. It is a mither, but sometimes you have to bang that drum to get what you want, especially now, after COVID. Everything seems to have got worse since then.
It takes time for the drugs to kick in, but once they have your dad should start to feel better. Try and keep exercises up, no matter how small, just to keep the movement of the joints going. Joints are protected if the muscle is kept strong.
I understand it is extremely difficult to do when you are in a lot of pain, but it is worth it if he can try and do a regular amount of range of movement exercises.
NRAS have lots of information and a help programme for exercise and self help. I think it's called SMILE. If you ring their helpline they should be able to advise you.
Loads of luck for your dad. I hope he gets an appointment soon. xx
You have already had some good responses.
Can I just add that fever and sweats are entirely possible due to Rheumatoid arthritis.
When I had the active disease, I would have nights when I alternately shivered and sweated - to such an extent that I would have to get up (with difficulty), towel myself down and change my pyjamas half way through the night.
Severe cramps are another possibility. Plus pain that makes you frightened to move.
It is not fun.
These symptoms may come and go for no obvious reason.
Pleased to say that I have not suffered these problems for many years since I went on methotrexate. You may need other drugs.
In the short term, steroid injections had a dramatic effect and Ibuprofen or an NSAID seemed to help a bit. You have no doubt already been told that you must not have too many steroid injections. The long term effects are not good.
There is some evidence that keeping up your Omega 3 levels by taking fish oils (not cod liver oil) or olive oil as part of your diet may help with inflammation. I've made a point of doing that and it certainly hasn't done any harm. However, does sound like he needs serious medication.
I’m sorry to hear this. A general steroid injection can often make you feel quite euphoric after it and also flushed with red face/cheeks. Used to happen to me when I had the general steroid shot. Shivers can occur after a flush as part of the body trying to cool itself down, so could be that but usually the flushing/effect on the face calms down after a couple of days. I hope your Dad can soon get to see the NHS rheumatologist and they arrange an RA med for him and advise re pain management too. As someone else has said, you can’t rule out it’s not flu etc. at this time of year. Hopefully it’s not and he’s feeling better. Good luck.
Thank you to everyone for taking the time to reply - reading all your words has been a great help - we are hopeful that a referral will come soon, despite all the telephone calls to the GP and the unit where dad has been referred. Once again thank you xx
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