Advice please

I will try to keep this short.i have been on low dose steroids and pleq for 13 ish years for an unconfirm con tiss disorder.7 years go I was admitted and label of secondary fibro added.some how I wad sent to a diff hosp for pain management but saw consultant rheumy.discussed symptoms ect and I explained how I felt unwell since reducing steroids to 5 mg a day as per old rheumys instructions 7 months ago.i have also developed livido on legs and arms.after examining me I asked new rheumy if this was consistent with fibro and if they could help pain wise.i was floored when she said it was NT and that given my symptoms have worsened eg fatigue night sweats circulation issues and that this was on a similar timescale to steroid reduction she said NO !!!.she ordered stacks of bloods, put me on sliding scale steroids and gave me info on immuno suppressants.bloods have always been ok except chronic anemia and low ferrtin.i am back in four weeks.i am scared stiff at thought of immuno suppressants and utterly confused if what I am experiencing is a flare of sle or similar.(old rheumy said I was in remission and symptoms where fibro). She has taken over my care.i am so confused and scared.i don't want immuno suppressants as they scare me.i feel my world has been shaken

10 Replies

  • Hi there

    Try not to worry too much until you go back in 4 weeks as stress and worry can make your symptoms worse.

    Your new rheumatologist sounds very thorough and it appears is being guided by your symptoms and blood work which seems sensible.

    Immunosuppressants aren't necessarily that bad. When I was first diagnosed I really wanted to avoid going on them, but there came a time when I needed them. I'm now on methotrexate and I have to say it has improved my symptoms and my life so much that I haven't looked back. Yes, the day after I take it I can (not always) feel a bit yukky, but it's well worth that and the regular blood tests for how well, fit and active I am otherwise.

    Be honest with your rheumatologist about your concerns, ask questions and make an informed decision. Ask about alternatives if you are really against it, or give it a try and see how you get on.

  • My bloods have all been neg so far

  • Sorry I probably didn't explain myself very well. I was thinking that your rheumatologist had ran lots of bloods with a view to seeing what was happening now to back up her suspicion that there was more going on than has been to-date.

    Although you can have negative bloods and still have SLE.

    If you are in any doubt the best thing to do is to have an open and frank conversation with your rheumatogist to ask them to explain why they think what they do, so that you fully understand what they are thinking. Most should have no problem doing that. If you don't agree with them then you can decide how to proceed, but at least you can make an informed decision.

    I hope that helps.

  • Are your bloods negative too

  • Mine were positive but even with that it took my rheumatologist a while to decide on a diagnosis as she wanted to be sure.

    Regardless, she did think about immunosuppressants and gave me leafletsto read, but initially she decided I didn't need them. It was only later as things progressed that we agreed I needed to start them to control my symptoms, and it worked well. By this time I had a diagnosis and other treatments were no longer effective. From my own personal experience I would rather be on methotrexate (the immunosuppressant I am on) than prednisilone. But everyone is different and it is up to you to decide what is right for you.

  • I ve been on prednisone for 13 ish years as well as never clicked why after I had reduced them I started to feel yuck.i wonder if immune suppressants are better long term than always been on steroids

  • If it were my choice AmandaJane, I'd be guided by your new consultant. As above I agree with the comment of Lupylass about asking questions. I even went one further on my second visit and asked if I could record our conversation on a dictaphone and he agreed. I played it over a few times and felt much better and less stressed trying to remember everything that is said. It also led to further questions and answers.

    Try not to worry, it is not good. Try to relax and let things go. Your worry cannot write prescriptions, nor know the best thing to do.

    You will find out more information next visit and then you can ask questions because of the result of the blood tests and proposed treatment. Before then try to look after yourself by not worrying too much. Is easy to say but please try. The next appointment is your goal, you can do nothing until then.

    If I find myself getting tense about anything I recite Never trouble trouble til trouble troubles you.

    Meet it if it turns up, not before. Hope it helps.

    You have lots of friends here to support you and share your experience.

    Look after yourself


  • Aw xxxx

  • Hi Amandajane

    This could be the breakthrough you need with your health and I agree with everything Footygirl and Lupulass have said. Your symptoms don't sound like Fibro and don't be too scared of immuno-suppressives as the doses used for these illnesses are much smaller and they are good steroid sparing drugs!. Good luck for the results in a months time, let us know how you get on. X

  • Thanks guys.i ve had this lark for years.a firm answer would be good after all these years

You may also like...