Feeling rather down.

[RosieA]

Been on steroids for 4 days now - no improvement, not even a whiff of one, although it was hoped that I would be able to phone Rhuemy team to inform them that the steroids had helped after 3 days. Sadly, joints in hands and feet increasingly worse and increasingly painful. I have heard that this can happen with sero-negative RA. Am sure it has happened to others!?!

[Deniseelk]

I found the first few occasions I had to use Prednisolone ( for a short period) it worked very quickly... within first few days started to feel some improvements. My last time was very different. In hindsight I think this last time I had let the inflammation to really take hold and it actually took 2 weeks before I started to see some relief! Give it a few more days but do try to rest those limbs and be kind to yourself.... let the steroids do their job. The way I knew they were working was each day, very gradually, I was able to use my wrist and fingers slightly easier and actually do more things for myself.... very subtle improvements! Be kind to yourself.

[RosieA in reply to Deniseelk]

Thank you for your kind and thoughtful response. Yes, the RA is certainly out of control. MTX has stopped working for me and am in the process of changing meds. My lovely consultant wanted me to call after 3 days to let them know all was OK. Sadly, not the case. I will persevere until she calls back later in the week. I was warned by one RA nurse that this could habppen with sero-negative RA. Here's hoping as you say with rest and time I might see some improvement. Kindest thoughts

[sylvi in reply to RosieA]

If the hospital has asked you to ring so ring them to tell them so do ring just to be on the safe side. xxxx

[RosieA in reply to sylvi]

Will be doing so Sylvi. I honestly feel as I was prior to diagnosis, if not a little worse. Lots of tears of frustation and fatique. I also need to chase new prescription. Off this morning to have blood pressure taken before I can start them, also all the obligatory bloods. What a journey this all is. How are you this morning? x

[sylvi in reply to RosieA]

I'm still breathing darling so i must be ok aren't i. I am in pain with my back and my RA fingers. xxx

[RosieA in reply to sylvi]

Breathing is good! RA fingers are a nightmare. Have just started the last few days being aware that I am having to hold things differently. Even grasping a pillow ( that sort of clenching motion is very sore). Phone call made. x

[Knit12]

I too am on steroids at the moment as I took an allergic reaction to the RA drugs I was on. 3rd one in 18 months. Been on the steroids for 2 weeks felt rubbish as they weren’t working. I contacted rheumatology and they agreed they hadn’t given me a high enough dose as I had been left too long, so been given a higher dose for the next 2 weeks and will gradually cut down. Hopefully I will have my new drug to try soon. Best advice I can give, is don’t suffer contact them and tell them how you are feeling. Good luck x

[RosieA in reply to Knit12]

I have been in contact as needed to give blood pressure result - perfect! Yipee. Now just need to start new drug as well to get back on track. May need a higher dose - although already have osteopenia so probably a balancing act. What drug are you going to start now? I do so hope this one is successful for you. x

[stbernhard]

Hello Rosie, I can imagine how you must be feeling. Constant pain and resulting fatigue gives you every right to feel down and in tears. It will get better though. It may take more time than you wish, but you will get your strength back. Big hug.

[RosieA in reply to stbernhard]

Thank you. You are of course right, we do come through one way or the other. I have funnily enough given myself this pep talk this morning. It's amazing though how fragile we are. One moment, I know exactly who I am, my abilities, strengths, personalilty etc. The next, when RA fatique and discomfort sets in, I sit and wonder. Or is it just me? x

[stbernhard in reply to RosieA]

Hi Rosie, it's certainly not just you. Your body using a lot of energy to fight the inflammation, constant pain and tiredness lead to fatigue which is completely overwhelming. I remember my ups and downs all too well. Frustrating and horrible. I hope you get some relief soon.

[charisma]

Hi Rosie, I too found it took a week or so last summer but the uncontrolled RA had had a grip for several months.

15mg a day was slow to take effect.

Then in September, back on it again, started with 20mg daily for one week and slowly tapered. Much faster!

I hope they will soon tell you to take a higher dose and get you some relief. x

[RosieA]

I think you are right in that uncontrolled RA has been established for longer than I have thought and reading some replies has highlighted this for me. I have been struggling with MTX and now realise that not only has it made me feel awful it wasn't really doing anything. It may well be they advise going on a higher dose to see me through and now relying on small dose of hydrox and steriods alone. Tonight was MTX night be now off it but waiting new prescription. (A glass of wine tonight methinks!)

[Jfmc]

I started on prednisolone just as lockdown started. I am diagnosed sjogrens but rheumatologist now thinks I may have overlapping RA. Can’t investigate further or put me on treatment until covid crisis is over.

The initial dose of 10mg per day did absolutely nothing. Eventually put on 20mg a day, with fairly good results and am now tapering. Pain and some swelling in ankle and heel still there but not agonising.

The most disturbing thing is that my rheumatologist says prednisolone is a very dangerous drug at the moment as it replicates covid 19 in the body. I looked this up and there are 2 small studies showing that it helps in early stages of covid but then starts to replicate the virus, making it, I suppose, much worse.

Long story short, he says I have to come off the prednisolone, and hope that pain and swelling does not get worse. In the meantime I have to be ‘very careful’ , which will be difficult as I can’t get shielding letter as all this started too late to be in my medical records.

It’s all very complicated at the moment. I go from being very cautious to thinking “ I can’t be bothered with all this. I’m just going to take my chances “ I guess many of us are in the same boat !

[RosieA in reply to Jfmc]

Oh Heavens! What a sobering thought. I am shielding anyway, although placed in moderate risk group initially as my elderly mother lives with us and she was placed in the shielding category. Nevertheless, it is a worry. I have a call out to the RA team so will discuss this with them. In all honesty even when I was on 20 mg they were not live changing. No increase in appetite / change in inflammation etc- just slightly better looking skin - bit of a glow. So if I stopped tomorrow I don't think I'd miss them. Thanks for the information, I'll certainly explore this concern more.

[bubblyalex in reply to Jfmc]

Yikes 😬

[Knit12 in reply to Jfmc]

I was told by my rheumatologist that people who are having steroid injections are far worse with coronavirus hence why we are on the oral versions at the moment, as that is not causing the same problems probably as it is a much lower dose. I’m not bothered as shielding so have no intention of coming into contact with anyone