1. Community
  2. Bones, joints and muscles
  3. Rheumatoid Arthritis

Advice please from RA patients

Posted , 15 users are following.

kaz51163
kaz51163

Hi there, I had my RA confirmed just last week. At the same appointment I was given a steroid injection to help ease my current debilitating symptoms. Three days later and I find my symptoms have improved but not completely disappeared, yet. I was given information leaflets on Sulphasalazine and Methotrexate. When I return in 3 weeks I will be started on which ever one I decide on.

I have been off work now for 7 weeks and am due to return next week. However, I find although I am desperate to get back to work and normality, I am worried that my symptoms will return and I would then have to go off on sick again which would count as another sick episode, something which HR don't take kindly to.

I am a nurse and work 12 and a half hour night shifts. Prior to this period of sick leave I was finding that half way through the shift my hands became inflamed and sore. .....this would lead to poor sleep the next day and then struggling (badly ) through the next nights shift. Got to the point I had to go off sick and now understand I have been having a bad flare. My bloods showed RF and CCP positive.

My question is, will the steroid injection keep me symptom free till I get started on the meds?

Any advice would be much appreciated. Thank you for listening!

0 likes, 66 replies

66 Replies

Prev Next
  • Ted12345
    Ted12345 kaz51163

    Posted

    Biologics
    • kaz51163
      kaz51163 Ted12345

      Posted

      I haven't been offered those Ted..........I understand they don't prescribed those unless the Methotrexate and Sulphasalazine have no effect?

    • frances85589
      frances85589 kaz51163

      Posted

      Not true in my case.was told needed to have tried 2.Methotrexate was damaging liver so given sulfasalazine and still 10 mg prednisolone and 450mg Pregabalin. Then onto biologics. 3 failed and I then got bad neurological problems. Hydroxychlorine helped alot
    • EileenH
      EileenH kaz51163

      Posted

      Yes, it isn't "just" has no effect - you have to have "failed" the normal sequence of drugs. Either it didn't work or the side effects were unacceptable.

    • kaz51163
      kaz51163 EileenH

      Posted

      Oh, I-m hoping the first line of treatment, methotrexate, is appropriate and effective for me.........I'm aiming to be positive and look forward to getting these episodes under control , thank you for your help! 😊

  • patyrod
    patyrod kaz51163

    Posted

    I was on Prednisone for a while last year for trigeminal neuropathy  After a couple of months, I was weaned off it and was started on Plaquenil.  About that time, I was hit by the rheumatoid disease. After a few months, I was ready to start on Methotrexate.  Unfortuneately, I came down with shingles before I could start it.  So, I had to wait about a month to start till the shingles cleared up.  It has helped me a lot.  I have had one dosage increase, but still have some pain and swelling in my hands. At least now, I can turn the keys to my house and car.  The reason I decided to start Methotrexate was the phrase "joint erosion".  Thinking of my joints dissolving helped me to decide it was worth taking a chance on the side effects.  I think Prednisone is a good bridge treatment.  If it isn't working, contact your doctor right away.  Maybe you can add some orally.  Another thing that helped me immensely during the bad nights is hand energizing gloves by F*****.  They are much more comfortable for sleeping than the stiff hand splints and you could even wear them for computer work and other "dry" tasks.

    • kaz51163
      kaz51163 patyrod

      Posted

      Hand energising gloves? ?? Ooh, I need to look into sourcing some of those! Thanks for the tip!
    • EileenH
      EileenH patyrod

      Posted

      Do they do whole body energising gloves?????
  • janis06023
    janis06023 kaz51163

    Posted

    Hi, sorry about your diagnosis. I was wondering if your doctor has not suggested a biologic?  I have been on Humira and Arava for 12 years.  My doctor said biologics are the best for stopping joint damage.  I was on methotrexate and prednisone in the beginning but they were stopped years ago.  I am doing well and probably lucky that it works and I have not had to change to another biologic.  Has your doctor mentioned putting you on a biologic?  I know they do not work for everyone but when they do it is amazing.  I wish you luck and hope get on a drug that works well for you.  
    • kaz51163
      kaz51163 janis06023

      Posted

      Thank you for replying Janis. No mention of biologics, was only offered methotrexate or Sulphasalazine
  • lorraine74484
    lorraine74484 kaz51163

    Posted

    I am sorry for your diagnosis. I was diagnosed in July 2016. I was given prednisone for only a short time as I am diabetic, but it didn't seem to help me at all. I was put on MTX injections.and Meloxicam and have been on it since September, not really any relief. A month ago we added paquenil and I still am having great pain without relief. I see the Rheumatologist next week and we are going to add sulfasalaziness as a triple therapy. All I can hope is things get better soon.

    I am very limited at work and how long I can sit or stand for. Work has been very accommodating but they can't really go much further.

    I hope you find what works best for you, it is a very frustrating process, aND seems a little hopeless at times, but please hang in there and keep good thoughts

    • kaz51163
      kaz51163 lorraine74484

      Posted

      Thank you Lorraine, I hope you find a treatment soon that reduces your symptoms.

      It all feels unbelievable at the minute, I think I thought once I got a diagnosis, the remedy would quickly follow. .......from what I've learned today, that isnt always the case! Still,;I have heard some very positive outcomes too, so, here's hoping!

      Wishing you well and painfree soon!

  • carol303055
    carol303055 kaz51163

    Posted

    I feel for you. I'm also a nurse but not in a physically demanding area. I can only give you my experience. I was first diagnosed about 4/5 years ago. I went through a range of treatments like I think many of us do. Methotrexate first then with sulphasalazine which gave me bad headaches so was stopped. As my symptoms progressed and I'd tried the DMARDS I went onto the biologics. I was on Humira and methotrexate and felt I could jump over the rooftops. I felt great and didn't have any infections to cause concern, something to be aware of working in hospital. I had little or no time off sick up to this point as I can remember. Then my neutrophils dropped. I had to stop my meds then the problems started. I dropped the dose of Mx but my symptoms were never well controlled after. I was off sick about 4 months. My knee which needed replacing (OA) badly flared. I ended up on an alternative biologic (etanercept) and Mx. I had extensive periods off sick. HR were supportive plus this is classed as a disability to be noted. You don't say how old you are but I had turned 60 by this time. I eventually retired last September. I don't get state pension till 66. I found oral steroids more effective than IM which surprised me. I have a few oral courses which were great!

    I do wish you luck. HR can support any requests for different working conditions. I hope you have a supportive manager and colleagues. It's not just the painful joints but the extreme tiredness you might feel and it's tough on the wards, I know.

    • kaz51163
      kaz51163 carol303055

      Posted

      Thanks Carol , it's really good to hear other people's experiences and the fact that you had a few years able to carry on working with little or no sick time is very encouraging !

      I spoke with my manager today, she is supportive but also keen to have me back asap! I am keen too to be honest, just worried that it will flare up again after a few shifts. I have agreed to go back next week, she has given me split shifts for the first week anyway! Here's hoping the injection keeps me symptom free till I start on the meds!!'

      Thank you again , take care!

    • kaz51163
      kaz51163 carol303055

      Posted

      Hi Carol, I had my first shift back on Monday night, it wasn't too bad actually, my hands did swell quite a bit by the end of the shift but not nearly as painful as they were prior to the steroid injection. I managed to sleep well too afterwards, however , when I woke, I ached EVERYWHERE! Not sure if that was purely because I hadn't exerted myself at all for nearly 2 months , or, more worryingly, my RA is starting to affect other joints? ?? I'm back on shift tomorrow and Friday night, so fingers crossed !

      I had a review with physio today as my ward manager had referred me. They were great and suggested some recommendations to suport my rehabiltation whilst I wait to get the RA more controlled. That is where I hit a stumbling block......my line manager, who originally pledged her support, is now saying the recommendations can't be accommodated! ! She is of the opinion that if I'm fit to be at work, then I should do just that and not be expecting others to 'carry ' me! 😲 I've been in a state of shock since. I never expected her reaction. I'm hoping that I just caught her at the wrong time, but I've documented everything that was said, just in case!

      Thanks for asking Carol!

    • carol303055
      carol303055 kaz51163

      Posted

      I'm glad your first shift went ok. Your manager's attitude is disappointing (though sadly not surprising). I can understand you feeling shocked. This is a time when you could be feeling very vulnerable and need support. This disease is so unpredictable which made me feel I wasn't in control. Not what nurses are used to. My HR doctor was very good and pointed out the Trusts responsibilities in law, given this is a disability, in his letter to my line manager. I suggest you talk to them. They should be supportive. Good luck xx

    • Gloria814
      Gloria814 kaz51163

      Posted

      Hi

        I have been thinking about you and wondering how you are doing now that you are back at work.  Hopefully the aching everywhere is just from being off work 2 months and your body getting adjusted to the work again

         Sorry to hear the news about your manager and her lack of support 

      Hopefully you just caught her at a wrong time and that when you return that she is supportive and helpful.  Glad you had some physio guidance / instruction

        Hope all goes well for you.   Not always easy but try to  stay positive   

    • EileenH
      EileenH kaz51163

      Posted

      I'd suspect she MAY be trying it on - you do have legal rights "within reasonable limits". Can't see where a problem might be if you are just doing things slightly differently. But perhaps SHE  might have to do something? 

      Oh for the old NHS where we sorted it out between us on the grounds helpding someone when they needed would result on us being helped in our turn...

    • kaz51163
      kaz51163 Gloria814

      Posted

      Thanks Gloria, I am being very positive as I know only too well how much that helps. I have told my manager that too and that I aim to be back to as near normal as possible once the meds kick in.

      Hope you are well!

    • kaz51163
      kaz51163 carol303055

      Posted

      Thanks Carol! I've decided , for now, I will give her the benefit of the doubt and put her attitude down to having a bad day. The ward is already stretched to the limit staffing wise, so I kinda sympathise with her on that point. I have also printed off an information for employees leaflet which hopefully will give her a better understanding. Having said that, i'm also keeping a log of everything said.........just in case I have to take it to HR.

      I hope you are well , and thank you for your concern!

    • frances85589
      frances85589 kaz51163

      Posted

      Good you managed to get back at work but be gentle on yourself. You are in a caring profession and you would think your line manager would be caring with you too. I hope the medications work for you and keep the disease controlled.
    • carol303055
      carol303055 kaz51163

      Posted

      Aw, fair enough. I know what you're saying. Everyone is under such pressure in the NHS. I have been looked after so well through all of this and I sometimes wonder how they do it. But do take care of yourself. There's only one of you! I'm sure you're doing the right thing by keeping a record x

Back to top
Prev Next

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.