Hi everyone! Just found this site which is so helpful. Finding that lots of my symptoms and feelings are shared by so many others.
After diagnosis I got down from 20mg to 3mg prednisolne. Could not reduce any further but then pain etc returned so increased and am now on 5mg and hydroxy. for last year. Its not working now at this level as I have lots of problems with pain and swelling and the brain fog, can't move thumbs or bend some fingers some days! Also mega chest pain, thought it was a heart attack and a burst blood vessle in mouth - very odd and sore!
Recent blood test shows slightly raised anti DNA, low red blood cells and low vit D. Having blood test for B12 and ferritin and a liver test next week. When I see rheumy next should I ask if something like methotrexate is better than increasing steroids? I find here that other people get 'manic' on steroids. Sometimes I scream inside my head and sob! not just cry but howl like my world has ended! It could be the lupus tho and the extreme tiredness but quite a scary emotion! I take up to 6 strong co codamol a day which GP doesn't like but Rheumy says is OK!
I also have ulcerative colitis, sjogren's, fibromyalgia which predates the lupus, and the usual mouth ulcers, migranes if I not careful etc..
I have to work as partner made redundant and has own problems! I am too tired to do anything else tho' so where to go from here??
Written by
saranne
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MTX is not a drug to be taken lightly and it can have horrid side effects. However, many people manage perfectly well and loads have no side effects at all. 7 units of alcohol per week can be a struggle for some (it was for me). Importantly - it may significantly reduce the activity of your lupus so you can take fewer steroids, or even get off them altogether in time.
Steroids, on the other hand work instantly and seem to make you feel amazing to begin with (I felt high for days!). They take away all the pain and stiffness too. But they CURE NOTHING. All that happens is that the symptoms of your lupus are masked. Long term use is bad for the bones (danger of osteoporosis), for the figure (they make you fat), for the emotions (depression and tearfulness), for thinking capacity (dulled), for the kidneys (they raise blood pressure) .... and maybe some other things I don't know about...
My GP says 6 co-codamol daily is OK (the rheumatologist will have me take ANYTHING except NSAIDs) but I need senna too.
Sound as though your life is quite hard. MTX can make you quite tired for 24hours or more after taking it.... can you adapt to this, do you think?
Good luck - and let us know what you decide to do.
thank you for the reply, its quite exciting to have people to talk to!
I can't take NSAID's due to gastro inflammation. I can't drink at all it gives me migraines which are horrendous. Glad the codeine is ok The calm that descends as it starts to work is lovely!
I don't know about senna? will look into that.
More steroids would work I know but the side effects are bad and this dose is not eneogh now.
Do people take MTX every day? It would not be good to be even more tired all the time!
I have to decide in next couple of weeks if I want to work less days from September
(in a school). I can't help being angry at the financial implications of this illness, But if I keep pushing myself and taking all the drugs I can, will I make it worse in the long run, who knows!! Very shocked to see how hard it is to get disability payments for people who are clearly unable to work.
My partner prefers to hide from problems, so financial worries are all mine.
Do let me know how you get on with it, did you have to give up on steroids? good luck, its not just in our heads!
MTX - once a week, with folic acid before or after.
Senna - for the constipation caused by co-codmaol
Look at Disabled tax credits. You need to be earning 20% less than before you got ill and there are some other conditions too, but you need only work 16hours to be eligible. Also apply for DLA/PIP - and council tax benefit if your income is low.
So I could take the MTX the day before a day off. Senna not needed for me, I take ascol for the colitis which works but still have more problems with the opposite of constipation!!
I did not know about disabled tax credits. I am looking at taking some of my occupational pension to help with the reduced income and will have to reduce hours by 25% to qualify for it. So if I get GP to say I need to work less (which he has been telling me for years anyway) I could qualify for the tax credit. I would get some reduction in council tax. Entitled to.com is a useful site.
I am probably not visibly 'bad' eneogh for DLA as once the drugs kick in each day I can walk, drive, etc for 4 days, the fact that I then spend 3 days doing nothing to get ready for the next week and how bad I feel, prob won't matter to them! I could try though! Only realised on this site that you can claim and work.
I suppose I am really looking at ways to be able to 'carry on' I would go mad stuck in the house.
Definitely apply for DLA. But also definitely get help filling out the forms. It's important to 'tell them what they want to hear' - not lying, just understanding how symptoms have to be described in terms that will be recognised and accepted. Also, we all tend to underplay how the illness affects us and also forget some (many?) details.
I receive both WTC (working tax credits) and DLA and look the picture of health!
Thanks for the advice, the question I have is - if I took a higher dose of steroids the symptoms would subside, well they did in the past. But the side effects will not be good in the long term, so are people who are ill enough for DLA etc at the end of all the available drug treatments? or can you apply while still trying to find the right and 'safe' level of drug treatments?
What I think is that - if I take just 1mg less of prednislone I cannot walk far on the swollen feet or use the painful hands to for example safely pour from a kettle. So do I keep taking more drugs, against GP's advice, or say this is what I am prepared to take and these are the physical limitations I have and qualify for help? I do need a car as could not walk to work, I used to up the steroid dose if I wanted to be more active for up to 5 days at a time, not on medical advice but just because I wanted to be 'active' again, but I do accept that this is not a good route to go down as it is harder now to reduce the dose each time. I will get some blood test results on friday which may explain more about the 'bad' last 6 months.
Saranne - when I was taking MTX, I eventually realised that it was good to take it in the morning of the last work day before a day off, because the side effects kicked in (for me) about 12 hours after I took it, and lasted through at least the next 24.
i take mtx to without any probs 7 units of alco it is 4 units best advice take none ive not had a drink for 10 years+apart from something at special occations its up to you to control the lupus try not let the lupus control you having issues myself ot the moment but determand to get them sorted
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