Steroids

Hi, well I went for my first appointment with the rheumatologist last weds, he told me that I will be in remition within 6 months. And wants to put me on the 'cobra' combination of mess??? But before doing this I needs some scans I think he said my lungs!! But meanwhile he had put me on steroids, well I'm not sleeping my head is buzzing yet my whole body just wants to flop, I must say the pain has gone just sore here and there. My job are asking me if I will be back in the office next week ? I don't know to be honest ?? I just feel so strange ?

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  • Did you have a steroid injection, or are you taking the steroid pills? I hate the pills even tho' they take the pain away as they make me too wired, so prefer the injections. But they are great while you are waiting for the meds to kick in.

    It's normal to check your lungs before you are started on the long term meds as they need to be sure you have no lung problems as the drugs could make that worse. And it sounds as if you'll be started on the same combination as me - methotrexate, hydroxychloroquine & sulphasalazine. It's a whole heap of pills to take every day, but it works for me!

    As for work, the steroids might be enough to keep things under control but it's pretty early days. Can you get an appointment with your GP and discuss things with him or her?

  • Did u get my reply just then ??

  • Hi just typed reply and lost it!!

    Yes I am on the pills and have go appointment booked for tomorrow, I was explaining that not sure about work on wed which is when my cert runs out as I either keep talking rubbish or making plans to do thing that my body just doesn't want to or Kay on the sofa with my head buzzing they will think I've gone mad at work lol

  • You might get used to them and calm down, or you might not! It seems that we all respond a bit differentlyso discuss with GP. But if you feel weird, then don't drive! And it's also important that you take these pills exactly as instructed, as stopping them suddenly can cause more problems.

  • Thank you for your time this morning really appreciate it, makes me feel less alone x

  • It's interesting that your Rheumy said you would be in remission so soon. I hope she/he qualified what they would do if this not the case! Generally health professionals do not give such quarantees because it only happens for a minority, leaving the other two thirds to trial and error a whole host of different drugs (you will see from the other forum members - it has taken a much longer period to find the right treatment).

    On a positive note, your steroids seem to have helped the RA symptoms, but you are experiencing some side effects. I continued to work for 3 months with severe side effects, I was only sleeping 2-3 hours a night, I was anaemic and the Drugs also intensified the fatigue. I did not listen to my body which was screaming at me and eventually ended up having to be off work for 2 months.

    You did not say what work you do, if it is sedentary or office work you may decide to go back to work, but let your boss/ manager know you have a chronic long term disorder. NRAS have leaflets you can print off to give employers explaining about RA and adjustments that you may need. A common adjustment is to have frequent rest breaks. Some work places may let you adjust your hours, so if you are fatigued in afternoon, they may let you go home earlier. I tend to go into work later and work later as mornings are difficult for me. If your work is more physical and or demanding you may want to take another week or two off, because you may exhaust your reserves by pushing yourself and when this happens you usually need a much longer time to recover.

    Good luck with the combo drugs, keep in touch with Rheumy team and they should give you an emergency contact (my EC is the Rheumy nurse and she usually responds to messages within 24 -48 hours). Listen to your body, don't overdo things (I'm still working on that) and seek help as soon as you feel unwell or experience side effects. The forum is extremely knowledgable on RA, treatments, side effects, giving good tips and most importantly knowing what you are going through.

  • Hi I've just returned from the docs still totally fatigued he has signed me off work for a further 2 weeks which I know hadn't gone down well she said couldn't I get taxi from train syaion to work and just sit at my desk and answer the phones, I felt maybe I haven't explained myself it was so exhausting and has left me feeling crap ..

  • Cor blimey - some people just do not get it (your manager, not you)!You have been officially signed off work by a medical practitioner. End of story, you should not be having to explain yourself or have to give any reason - a medical certificate says it all.

    1. Tell your manager that she is harassing you when you have been officially signed off sick and you will not engage in any discussion with him/her until you are signed fit to return to work by your GP.

    2. This manager does not seem to be following standard sickness protocols or policy. Can you get a copy of your workplace's sickness/absence procedures, these should be accessible to all employees. This will give you an idea of what the correct policy is and if your manager is breaching the company's guidelines and being informed can give you confidence to stop harassing behaviours.

    3. Your manager definitely needs to be given the NRAS leaflets previously discussed - you should be able to print off a copy of the online download version. This is no guarantee that she/he will be any less ignorant but you can prove that you have given information to your employer about a chronic disabling disorder that explains the condition and what the legal requirements are for employers.

    4. You have a disability that is covered by the Equality Act (2010). Ask your manager to consult this as there is a requirement for work to make reasonable adjustments.

    5. Does your workplace have an Occupational Therapy Service. Ask for a referral, they will assess your work needs including a workstation assessment (you may need adjusted desk, chair, ergonomic mouse, software, phone headset -if you do a lot of telephoning, etc.). They can also advise your employer of reasonable adjustments such as flexible hours, rest breaks, and so on.

    Let us know how you get on.

  • Sorry, meant to say in point 5. Occupational Health service not therapy although that would be good if they have an OT.

  • Thank you for that, I'm a receptionist / facility's co originator so I do a lot of setting up meeting rooms refreshment etc I'm also the handy one ie changing light bulbs making flat pack ect

    Thanks again x

  • Hi CTrigss,

    I just wanted to follow up on Braecoon's helpful message earlier - the NRAS website has a lot of information on working with RA. nras.org.uk/work The top two information booklets are a great place to start, one is for you, the other for your employer and hopefully will lead them to a better understanding of your disease. You can either read them online or you can request them by post by calling 01628 823524.

    We also have a booklet for those, like yourself, who are newly diagnosed with RA. nras.org.uk/publications/ne... Do have a look at it and then if you have any questions, please consider giving the NRAS Helpline a call on 0800 298 7650 as they have a wealth of experience to offer.

    Kind regards

    NRAS-Emma

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