Hi, hope everyone is well enough to look forward to Christmas, always a, stressful time of year when one is ill or dealing with pain etc. I have PSA, Fibromyalgia and Renal Cancer, cancer is on remission.
I was wondering if anyone else sees such a dramatic change in one's symptoms and other effects even on a low dose. I've found even on 2mg per day, I've seen my constipation better, pain and stiffness much less, sleeping better (obstructive sleep apnoea) seems to lessen due to less inflammation of my sinuses and, airways (I assume)
I ma always amazed that a small dose help with my chronic constipation, I never go very very regularly but even with 2mg I don't get the symptoms associated with chronic constipation.
Does anyone else take a regular and long term 2mg per day?
Thanks and merry Christmas
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Slightly_ginger
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I'm on 5mg now as a regular maintenance dose. The consultant keeps telling me this is safe long term and won't be enough to affect my blood pressure, bones, skin, etc, but the GPs keep wanting me to tail it off again (which I have done three times now and have had flares and problems with blood count again). But I can't say it makes any difference to my bowel! Higher doses definitely have an effect on my bladder and make it very difficult to hold it in, but not at this dose. And this dose makes a difference to the allergic rhinitis I get. But everyone's different.
Yup have got down to 5mg and doc says I might have to stay on. Will def. try to get down lower though. Even though on a biologic...Without it I flare...
Lovely rheumy and lovely rheumy nurse seem unwilling to prescribe the stuff so I've only had short courses, and those rarely, in the year since diagnosis. When taking pred I can't sleep and am so over-emotional it's embarrassing. It helps but it's not 100% effective for pain relief. I've not noticed a beneficial effect on the bowels.
Yes, me! I'd been on anther corticosteroid, deflazacort, 3mg for around 5 years. I was prescribed this particular one in Spain but only ever a short course usually 6mg for a month or however long it took to bring me under control again. It so happened when I left Spain I was on a course, 3mg, so when I signed up with my new Rheumy she represcribed it. Trouble is she decided I needed to be left on it because I was having good results from that & my MTX.
I'd questioned a few years ago if it was a good idea to rely on them to control me rather than amend or add to my DMARD, she thought so for the time being & I continued on them. She then went on extended leave so I asked the Registrar of a Rheumy who took on her patients (never did see the Rheumy) if I could taper off them but the answer was not without my Rheumy's ok, he decided I needed another DMARD though as I can't go above 17.5mg MTX & my feet were showing signs of disease activity. When she returned I asked again & having tried one DMARD which I had to come off she again thought it best to remain on them. I pushed & said I really didn't want to remain on them so a different DMARD was added & I changed from deflazacort to prednisilone to start a safe taper (the lowest dose deflazacort is 6mg & I halved those for my regular dose so it wasn't possible to do an accurate taper on them). I started on 4mg pred with the intention of a long taper. I got down to 2mg over about 4 months but I had to stop the replacement DMARD she'd prescribed & consequently have had to stop tapering the Pred so I remain on 2mg until next May when I see her next. I'm really wanting to stop it entirely, by tapering of course, as I'm really interested to know how I'll respond.
It is a good med for all the things you mention but I'd prefer not to rely on them as my regular med regime not least because I'm concerned that being on steroids for so long without a bisphosphonate that my bone density will be compromised. That said I do still take daily AdCal-D3 & biennial DEXA scans show I remain osteopenic borderline osteoporotic. Fracture risk is low so I've been fortunate, still everything tells me it's not good for my bone health.
Thanks, I'm just wondering if I can stay on even 2mg per day, it might just get my body on an even keel. I would continue with Humira injections fortnightly. Thanks again
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