I have been taking prednisolone for a long time for polymyalgia and GCA. The rheumatologist has decided to take me off prednisolone ( slowly reducing) and putting me on to methotrexate, as she said that prednisolone can affect my bones.Since I stopped taking prednisolone I have been getting all the symptoms of polymyalgia and GCA., ie muscles aching all over and headache. They are adamant that I should come off prednisolone due to it's affect on bones, but quite frankly I would rather risk that than suffer all this pain which stops from doing so many things.
What do you advise?
Christine Sidey
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Chrismag
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As you’ve been on Pred for 8 years - and with GCA in high doses at the beginning- then I imagine the most damage [if any] to your bones will already have been done. What dose are you actually on now?
..and do you know the state of your bone health? Had a DEXA scan? Are you on VitD/Calcium supplement and/or a bisphosphonate like Alendronic Acid?
If you are having PMR/GCA pains then reducing the Pred is not sensible…. And MTX alone is unlikely to do the job your Rheumy seems to think it does.
I'd ask the same questions as DorsetLady. And there is a wonderful word in the English language that sometimes needs to be used with doctors. Just say NO! Have you actually stopped the pred or are you just reducing? And how long have you been on MTX?
If methotrexate REPLACED pred in PMR, they would use it from the outset. It doesn't and they don't. You have to ask why they think they can introduce it and stop the one drug available to PMR patients that is guaranteed to control the inflammation and symptoms. For a small cohort of patients MTX does a brilliant job. For some more it allows them to reduce the pred dose a bit, for others it enables them to continue their slow taper with fewer flares. For some it makes them ill, for others it does nothing, Zilch. But for no-one does it get them off pred in a few weeks - or even months.
The way to use MTX is to start the patient on it and then, AFTER A FEW MONTHS start to taper the pred dose slowly - as slowly as you would do without it. You don't stop the pred until you find out if the MTX is actually doing something.
And if you have been on pred for 8 years - you can only taper the dose of pred as adrenal function returning will allow. ANd that is very often a LOT slower than most doctors think.
Hi, please listen to your dr and try to come off it if you can. I wish my rheumatologist had’ve tried me on something else back in the day.
I am now 68 and my bones in my spine are crumbling to pieces after 40 yrs on prednisolone. No one told me this was a possibility and in the last 18mths I’ve had 2 spinal fractures. I see people everywhere older than me walking, running, planning holidays and living their lives and I’m virtually housebound and in constant pain. I’m living on painkillers or I should say existing on them.
The alternative to pred is severe diability for us. If you have been on pred since you were 18 it wasn't for PMR and 40 years ago there probably wasn't an alternative - even methotrexate for inflammatory arthritis wasn't available then. For us there is nothing else besides pred - pred or nothing, and most people get off pred in well under 10 years. There are aksi medications to help prevent the problem you have. My husband had a spinal fracture and osteoporosis was found - he had never taken steroids in his life except while he had chemotherapy for a few months.
Methotrexate probably wasn’t available then but over the years since then many other drugs may have helped, but I was never offered them. My point is I wasn’t forewarned of the dangers of long term use of prednisolone.
Obviously if you aren’t aware of something happening you can’t take medications to prevent it, but am now on bone strengthening drugs but have been told it is probably too late to repair the damage.
I agree osteoporosis can affect anyone but I have been advised by numerous specialists that the odds are it was my long term prednisolone use.
How do most people get “off pred” in under 10 yrs if there is nothing else?
Because unlike most autoimmune disorders, the underlying cause of PMR burns out for the vast majority of patients in anything from 1 to 10 years or so, about half within 6 years and the rest need only a low dose of pred to remain reasonably symptom-free. Even if my maths was a bit careless. 28 year olds pretty much never get PMR, it is mostly in over 50s, so we are unlikely to be on pred as long as you even if it doesn't burn out.
I have been on pred for 15 years, I haven't taken bone protection tablets before and my bone density is still good. I recently developed some compression in a vertebra and since it COULD be a fracture (no pain due to it at all) I have had my first infusion just in case as I have other spinal problems.
Here we warn members of the risks of long term steroids - and advocate all patients get a dexascan at the start so they know where they are. Quite a few discover they have low bone density even before pred - and many of us never lose bone density while on pred. Yes, it increases the risks, but it isn't inevitable.
so sorry..i'm trying to get off Prednisone after 12 yrs.. doctors don't tell us about the pit falls of this drug...now they are telling me I should not take any over the counter drugs like naproxin ...with Prednisone... its hard to get off .
If you have PMR or GCA, Naproxen and other NSAIDs don't work anyway. No-one here turns a hair about my PRED dose - it is the PAINKILLERS for a different problem that upsets them. One pain problem that no painkillers really helped with anyway, they just took the edge off, was solved with a steroid injection.
But your greater problem now will be getting adrenal function to return.
so sorry..the people who praise prednisone haven't lived on it as long as you and I..12 yrs on it has been awful ..at the beginning it was great but 12 yrs is not right...my life is a mess..living in bed with awful pain
I beg your pardon - but I have been on pred longer than you, 15 years and counting. It gave me my life back, And there are plenty for whom it saved their sight. If you are in pain at present it is because you still have PMR and are forcing a reduction to zero.
it is wonderful that it has worked so well for you..I have had bone problems since taking Prednisone..and mood swings. I know this med is a wonder drug for PMR..but it has side effects also..not trying to be a pain but there are always some side effects..I'm in pain also from fibermylia and arthritis
In the 5 years I had untreated PMR I suffered from mood swings that are worse than any that I've had while on pred. Yes, there are side effects, there are with any drug, even paracetamol. But most of them can be avoided or at least mitigated.
I had already lost the sight in one eye before I was diagnosed with GCA… and Pred saved my other eye. I shall always be grateful to Pred for that, without it I would be totally blind.
It never caused me any issues - no pain, no noticeable effects apart for weight gain early days [now back to virtually what I weighed before I was married 55 years ago]. All a matter of perspective and being on the right dose at the right time.
i agree ..almost 13 yrs on Prednisone and its great for a short time but yrs on it is a bone killer..I know its a miracle drug for short time but the side effect are awful .. I hope you can have relief from all this
Nothing "gets rid of it" - all that can be done is manage the symptoms until the underlying disorder burns out - as it does for probably 95% of patients. In the meantime - pred is the only affordable option. There are a couple of drugs, monoclonal antibodies, that work but cost more than £12,000/$15,000 per year for the medication alone besides administration. Not all insurances will cover them and if everyone were given them, more healthcare systems would collapse.
Bit having had PMR for nearly 20 years and been on pred for 15 of them - pred gave me my life back and I don't regret taking it.
I have been on pred for 12 yrs..I have poly and fibermylia.. my Dr. treat me at UofM Michigan. I have been on high levels and med levels for yrs. 2 yrs ago I started tapering down with blood tests every month..I'm on 2 and a half mg now. my blood levels are high but they are still letting me get off... my doctors tell me not to take pain meds. It's very hard .. I sleep a lot ..thank God I'm retired.. the reasons I have to stop predisone is bone and high blood pressure and high sugar problems if I stay on it..I have mood swings on it also...thank God i'm finally getting off it.. there must be something else I can take to make my blood levels come down...
Possibly in the USA - Actemra or Kevzara. I'm surprised your doctors haven't suggested it to help get you off pred. But I think that after 12 years, they are being a bit cavalier with getting you off with respect to adrenal function. And THAT may well be why you are sleeping a lot.
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