On December 23rd last year I woke up with a swollen hand and stiff arm, to be honest, I thought I must have slept really awkwardly.
On Christmas Eve when I woke , I was so stiff and sore and could hardly move, so as you can imagine Christmas was interesting, several ice packs over so many swollen and stiff joints, knees,ankles,hands etc.The pain was really bad.
Due to so much COVID at hospitals and it being Christmas put up with the pain till, New year and Health centre open again then managed to get an appointment in January and was diagnosed with P.M.R.
After blood tests which the results where not at all good especially the inflammation. They realised there was more to it and referred me to a rheumatologist.
I was diagnosed with Seronegative Rheumatoid Arthritis in March 2021,
Have been on Prednisolone since January.
Over this year I have tried:
Methotrexate
leflunomide
Sulfasalazine
All meds have not agreed with my body and pushed my Serum alt blood levels to an unhealthy level.
Finally had a face to face with Rheumatologist two weeks ago , next step is injections but because I have no sign of significant inflammation on my body to physically see, then guidelines don’t allow for injections, despite having all other qualifying symptoms.
So told to come off Prednisolone (steroid ) and if swelling returns then can have injections. However it might not for a while because as I have been on Prednisolone so long it might still stay in system to keep inflammation down.
Have gradually tapered off Prednisolone , it has made me very tearful at times.
I have an appointment on Friday this week face to face with Rheumatologist, at the moment apart from pain in hips, inner thighs and neck , I haven’t had significant swelling.
So don’t know what will happen on Friday, ideally would like to stay on low dose of Prednisolone but have been told this is not possible as I have Osteopenia .
Any natural remedies or advice would be a great help as at times I feel so out of my depth with all of this.
Like you my inflammation markers don't show in the blood. You want to tell the rheumy on Friday you don't want another Christmas like last year and rub it in how bad it was darling. I know it takes ages to get a drug that is suitable for you so be patient darling. Hugs.xxx
Thank you so much for taking the time to reply to my post. Just read your post, you have been through so much. Take care of yourself, sending you a virtual big hug.
Good morning, welcome , but sorry that you have had to join us.I'm seronegative too, it was a long haul to get appropriate treatment as my bloods were the defining factor for my first rheumatologist.The fact that you already have a diagnosis and are receiving treatment is a big bonus. Coming off steroids until your appointment is sometimes suggested so that the issues you are experiencing can be seen in the raw as it were.
Do you keep a journal of how you are feeling ? What your joints are like ? Several of us do as it can provide the rheumatologist with insight into your daily experiences. If not, it might be wise to write down your symptoms, pain and so on and take it to your appointment. Don't be frightened to speak up for yourself.
As to natural remedies, the evidence suggests they don't work, if they did we would all be using them and the NHS would save a fortune !
But....looking after yourself , keeping your weight to a reasonable level, eating well (Mediterranean type diet is recommended by NRAS), stopping smoking, reducing alcohol intake, staying as mobile as you can, getting enough sleep and rest all help, but wont cure your RA.
Best wishes for your appointment and do let us know how you get on ?
Thank you, I always record things for Rheumatologist so I can explain everything in the hope of getting the right treatment, but thank you for your advice. I walk daily despite the pain in joints but I know it’s important to keep moving. Luckily I don’t smoke and hardly drink , but enjoy an occasional glass of red wine.Take care of yourself too, and thank you so much for replying.
As many of have learnt, sometimes you have to be politely assertive to get heard. And be very clear the extent to which your life is being affected.
I presume by “injections” you mean biologic drugs? These have up until now been restricted to people with severe RA, as measured by a thing called the DAS. This is a standardised approach that puts together blood inflammation levels, tender and swollen joints, how you feel to come up with a score. And it used to be you had to score about 5.2 to be eligible. Which is hard if no swollen/tender joints and low inflammation levels.
However, this year things have relaxed slightly - yippee!
So if your rheumatologist still says you don’t qualify, then you need to find a way to politely challenge this view and ask him to double check. Difficult as some doctors don’t like their knowledge to be questioned, but perhaps “I had heard that new NICE guidelines now allow biologics for patients like me….”
I am sorry to hear your diagnosis….but my advice from 20+years of RA is to try to accept your diagnosis, listen to your doctors& ignore all the well meaning folk who give dietary advice. Obviously if you find something you eat does seem to affect your condition….just don’t eat it…luckily I have found food does not affect my RA…but you will no doubt get lots of advice from people who have no idea about RA…. but will still tell you their Auntie was cured by eating xxxxx!Sadly there is no clinically tested food regime yet proven to help with RA.
It’s true that taking the disease modifying drugs to control this disease really is the way to go…& the three drugs you are taking are a tried & tested regime…but as they are not helping too much, your rheumy will probably offer something else when you see him
Congratulations on tapering off the Pred you have a good doctor who is not encouraging you to stay on it.
I Hope you get some good advice on Friday……there will be a drug to help you…but sadly it can take a bit of time to find it….but find it you will…so hang on in there!
Try ask for Rinvoq. I have gone through all kinds of pills and injections, nothing worked. This stuff is a game changer! I am seronegative as well, but always positive
You say no significant swelling, but is your range of movement in your neck or hips limited? If it is this is probably due to swelling even though you cannot see it. Also you need to be very clear about how desperate you feel and how your day to day activities are affected. Good luck.
I do have problems with movement of neck and very painful hips and inner thighs, if I roll over at night it really hurts on both hips.Thank you for your advice really appreciate it.
I was quite surprised to find that the rheumatology nurse thought my joints were badly affected when I thought this is how they are normally (painful and swollen but not enormously so like sometimes). So a F2F can be really useful.If you have any photos of previously swollen joints that can help towards the decision too as well as your description of symptoms.
It is difficult when we have to come off steroids to qualify for biological treatments!
Hi there, if you would like some more information about your treatment options moving forward, the update to the NICE guidelines for advanced therapies (biologics) or just some further tips/info ahead of your appointment tomorrow I highly recommend giving the NRAS Helpline a call and they can talk it all through with you They are open between 9:30am-4:30pm on free-phone 0800 298 7650.
I am sorry to hear about your diagnosis. I can remember getting the same news and feeling like I had finally unlocked a puzzle! I had experienced many years of symptoms without realizing I had RA.This website is great for support and information. I live in the US and have access to “good” health care but I get far more valuable information here than I get from my rheumatologist.
Rinvoq is a new Jak inhibitor that will hopefully suit you. It is taken as a pill as opposed to infusion which is definitely an advantage! ( I was given a prescription for it but the cost of $15,000 a year was prohibitive!)
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