I am not sure if I should be here or Ra site as they aren't too sure which one or combo I have. I am not on any meds even after a year of trying to get a diagnosis but they are talking methotrexate. Just tried 10 mg prednisone but it made me so nauseous, foggy and unwell and didn't make any difference to symptoms I stopped it after 4 days. I have never had that reaction before so that was new. But after reading all the stuff about all the drugs and how they have all these side effects I think I am better off just managing as best I can the way I am. I cannot see the benefit of taking something that will make me sick all the time, cause infections and all the other nasty things that go with it. How do people work while feeling like this? that was one of the hardest weeks I have had, dealing with all the usual stuff and then topping it off with nausea etc. I found it hard to stay at work and really struggled.] so I have come to the conclusion if this stuff makes it all worse what is the point?
Not sure I want to take any meds after readingn a... - LUPUS UK
Not sure I want to take any meds after readingn all the side effects
Everyone is different in their response to medication and nobody wants to take drugs if they can avoid them.. I was in increasing constant pain in my joints and muscles for 8 wks and my inflamation markers were high, within hours of starting prednisolone 40mg, the relief I felt was immeasurable. I know steroids and other drugs have many side effects but sometimes they are the only drugs that work. I am still on steroids 15mths later although at a reducing dose. How bad is you pain it sounds like the effects of the medication far outweighed your pain. Personally if your pain is not impinging too much on your life I would avoid the drugs. I do hope you find a solution. Take care
No the pain is debilitating and I really just want to stay in bed and do nothing but unfortunately I have to work so I have to suck it up every day and do it. I spend the weekends resting so I can do it all again the next week. I now have no life except to go to work, I am struggling to do any housework and my hands are becoming increasingly worse among other joints. I have been like this for a year and my inflammation markers are very high apparently. The 10mg did nothing for any of my symptoms and only made me feel immeasurably worse so I stopped it. At this point I just want it all to end after fighting for over a year I am at the end of my patience.
Hello there. I really feel for you. When I was first ill (with sequential diagnoses of RA, UCTD, MCTD, 'inflammatory arthritis' and eventually Lupus) - early in 2005, I was like you and refused the drugs offered. To be completely honest I didn't believe that I could have something incurable, and thought that a good rest and some ibuprofen would sort me out. All I needed - in my mind, was to be able to get back in the pool an back to swimming several miles a week - and I'd be fine.
And so it proved - until the next bad flare, and then finally a third one (in the summer of 2008) when I was knocked off my feet from one day to the next with arthritis, anaemia, difficulty swallowing etc etc etc - this one was triggered by sunshine, and I never really got better after that. Increasingly the boundaries of my life have shrunk - now I can't even include a job in the mix - the social life went years ago.
So for 2 years I had refused the drugs. But eventually I had no choice but to give in. I had tried special anti-inflammatory diets, cider vinegar, lemon juice, garlic, more herbal combinations than you could shake a stick at - I had even been prayed for. Nothing worked as well as the drugs.
Bottom line - the drugs are horrid. They have horrid side effects on some (but not all people). But if they help me be able to function - to do some of the things I enjoy in life, for however long - I'll take them. The alternative seems to be to batten down the hatches and take to my bed in an increasingly dirty, and lonely existence.
Obviously it is up to you - but my gut instinct is that - if you have been as ill as you have for as long as a year - just maybe you should try? perhaps you could do what I did and say to yourself that you will give it a year and see what happens? Then re-assess after that....
Hi I know that nobody likes to take medications but it is not guaranteed that you are going to get all the side effects listed on the leaflets in the box. Indeed the benefits of some of these drugs far outweigh the cons of taking them. From how you describe the quality of your life at the moment it may well be worth giving them a try - nothing ventured nothing gained. I have in the past been hospitalised due to my lupus and have had really bad quality of life from time to time but this year after seeing new doctors and being given azothiaprine to start with along with prednisolone at a starting dose of 40mg which has been reduced to 15mg, I had I.V. steroids while my syptoms were very aggressive but that was short term, I was taken off the azothiaprine and put on methotrexate once a week and folic acid twice a week. I know the leaflets describe some scary side effects but I now lead a very full and active life. I feel better in myself than I have for years and am awake more often than I am asleep so am able to engage in my hobbies again. I have even started doing voluntary work and gained some qualifications. I hope one day to be able to go back to work.
Medications are not all bad and it is not guaranteed that you will suffer from the side effects, some of them are only one person in every 100,000 people who take it so that is very very few. From the huge improvement I have had in my life I would certainly recommend that you give them a go if your doctors say they feel you will benefit. I do however get prescribed calcium and vitamin D due to taking steroids and a family history of osteoperosis and I have had a bone density scan which has shown that things are fine.
Good luck and I hope that you get some relief from your symptoms if you do choose to try medication.
Madmagz x
Thanks MaggieS but how on earth do you work full time and cope with not only being in so much pain and dealing with that but throw in the horrible side effects? I am barely coping now and really feel like chucking in my job but I can't or I will be homeless.I have no option but to keep going on as I am because if I take any more time off work I will be sin binned. I already have to have medical certificates even if I am late to work after being held up at the doctors. I think too that the complete lack of support shown by the rheumatologists after I reacted to the prednisone doesn't make me want to dice with death. 10 days ago I rang to tell them I had to stop taking it and I still haven't heard a word from them. If I take anything even more toxic what do I do when I have a bad reaction as I inevitably will as I seem to have reactions to everything now. No aftercare support so it does not instill any sense of faith in them.
Iron Injections
Not the Consultant I wanted to see at Dermatology appointment but I got my Mycophenalate Mofetil.
NHS doctors refusal to diagnose immune disorders - conspiracy or lack of understanding ?
