I've had PMR for about two years. All symptoms vanished completely as soon as I was put on Prednisolone (15mg per day), but I had a bad experience with trying to reduce, as advised by both GPs and my rheumatologist, by large cliff-edge steps--from 15mg to 12.5mg, then 10mg, all in a very few weeks. All symptoms came back with a vengeance, they put me back on 15mg and offered no further suggestions, except to try the same process again and hope for better results. Isn't doing the same thing over and over again and expecting different results one of the definitions of insanity?
Then, by chance, I met the person who runs my local PMR support group, who told me about very slow tapering, so for the last 18 months or so I've been reducing glacially slowly from 15mg, and am now almost down to 4mg per day, without a return of symptoms. So far, so good. But I know from reading posts on this site that this sort of thing can easily get derailed, so I'm not getting too carried away.
Two questions:
1) I've been obediently taking Alendronic Acid, as prescribed by said GP and rheumatologist, all this time, but I keep seeing references on this site to people deciding not to take it, and I wonder why. What harm does it do? I'm also taking Omeprazole and Accrete-D--all of these to counteract possible side-effects of the steroids--and so far I haven't noticed any side-effects of any kind from any of them, or from the steroids.
2) The rheumatologist suggests--apparently it's my decision--that I go over to Methotrexate and stop the steroids, simply because I've been on steroids for nearly two years. But apparently Methotrexate suppresses the immune system, which seems rather scary with all this Covid around. Also I have a 17-month-old grandson who catches everything under the sun and passes it on--another reason for needing a bit of an immune system to defend me. The idea is to go on with the steroids for two months while taking Methotrexate, and then stop them. But in another couple of months, if all goes well, I'll be well on my way to taking only 3.5mg of steroids per day, and still reducing. If it all works that well, would it really be sensible to go over onto something different, whose effects on me personally can't be predicted? Instinct says no, but I'd be interested to hear what others have to say about that idea.
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Have you had a Dexascan to prove you have osteoporosis? Personally I would not touch AA without that sort of proof. Sadly the vast majority of drugs should not be taken unless you need them in my opinion.
I did have a Dexascan--no thanks to GP or rheumatologist; I asked for it myself, on the advice of my PMR support group--and was told my bone density was normal. Hadn't been taking pred long then, though. Perhaps I should have another now; that was more of a baseline thing. All the extra meds(apart from pred) I take are supposed to ward off side-effects that I've never actually had. But some might say that proves they are doing their job! What harm does Alendronic Acid (or Omeprazole, or Accrete-D) do if I don't actually need them?
Alendronic is not the sort of drug you want to take if you don’t need to. Even if you do need it, it is recommended that it should be taken for 3-5 years and it has been suggested that when the drug company Merck first produced the drug they did not realise some of its effects. The thing that would worry me most is that Alendronic acid has a risk of damaging your jaw bone. You should ensure you practice good oral hygiene while taking this medication to prevent your jaw bone from deteriorating. Have a dental check-up with your dentist at least every 6 months so they can address any potential issues.
As DorsetLady says if you need it take it, if you don’t need it, don’t take it.
AA is intended to prevent osteoporosis. Anyone who is on steroids or has had a bone break or fracture is at risk of developing this extremely painful and dangerous condition in older age. It is something I wouldn’t wish anyone to experience.
That said after 6 yrs taking it I was told to have a 2 yr break before having another DS to see if anything had changed. My scores show some osteopenic changes. My dentist has said once taken and stopped the extremely low risk of jaw necrosis persists.
Just to add to Heron82’s comment, that I have had 7 infections in a large back tooth, over 6 years & a lot of dentists refusing to extract the tooth because I was taking AA for 2 years. I have been off AA for two years, & after another 2 dentists said they wouldn’t remove it, I found a dental surgeon who agreed to do it. But she spent ten minutes talking to me about the risk of necrosis of the jaw, & I had to sign to say I know the risks. One of the dentists who wouldn’t do it was a dental surgeon at the hospital. It stays in your system for many years after you stop taking it…one dentist said 5 years to me, another said up to 15 years. Ihave never had a dexascan & took it at the beginning as it sounded like the right thing to do to help your bones.
The dentist I visit is cautious and did a thorough examination and X-ray before and then 2 and 6 weeks after a tooth extraction to sort out an abscess. He knew what the risks where, explained what oral hygiene regimen to follow and I have had no issues throughout. The key is to find a dentist one can trust and who knows what they need to do. Perhaps it was fear in the case of some of the practitioners that you visited?
Absolutely agree there, I checked with my dentist here before having the infusion. He was totally unfazed. panoramic x-ray, insistence on a hygienist appointment immediately and 6 monthly thereafter to reduce the risk of gum disease which is the main cause of tooth loosening/loss. I get the impression UK dentists have become very risk averse.
Who knows? They’d been treating me for years, in 2 cases, & I thought the hospital surgeon would go ahead, but no! I hadn’t met the dental surgeon before, but she spent 20 minutes talking to me before proceeding. I do have 11 other diseases, though, & a dislocating jaw which dentists don’t like too much, naturally!! S x
I’ve just finished antibiotics & bad oral thrush has re-started, despite lots of live yoghurt & Actimel. Also reddening tonsils area, & very nasty taste in mouth. But no pain in extraction area, jaw still swollen & bruised (but I don’t mind!!) Cautiously optimistic! Thanks for asking, S xx
Fingers crossed. Need a bit more than yogs and Actimel for thrush when abx are involved. A really good probiotic - #VSL3 would be my choice. And slosh it around your mouth too.
I forgot that bit, Sorry. I have acidophilus Extra, 10 billion live….maybe I should have paid extra for 25 billion….! Sloshing salt water round 6 times a day atm, as per dental instructions! Worst bit…the probiotics are in the cupboard I forgot I had them, whoooops! S xx
I took AA for 4 years with no issues (deemed necessary-family history and early hysterectomy aged 37) - but my question is do you need it? If not, then don’t take it.. do you know the state of your bone health? If not then request a DEXA Scan.
Ahh yes -the old “PMRonly lasts 2 years” chestnut.. It doesn’t -and as you are down to 3.5mg with no issues -then why on earth add in another drug with its own set of side effects..
Just smile and say no thank you - but I’ll keep it in mind!
I demanded a DEXA scan first and even with some osteopaenia the FRAX score (a risk tool) still said vitamin D and calcium only as sufficient. I said no to AA because of the risk with dental issues I have coming down the track. The oesophageal cancer risk for me was also a concern as I have a cancer gene and a relative with the same gene had ca oesophagus. I also had a history of gastric irritation and the docs weren’t happy to give me the injectable options without trying AA first. So it was a no from me. AA isn’t a benign drug but can be really useful for some.
I had GCA and was on Pred for 3.5 years starting at 60mg. I lost 3-3.5% bone mass. It isn’t a given that your bones will end up in a bad state with Pred, but you don’t know and that’s the problem. You are already down to 4mg, not exactly a big dose. My docs only repeat DEXA scans at 3 years, though some will do 2 because the change isn’t that rapid.
At only 4mg with stable PMR I would want an extremely good reason for starting an immunosuppressant that also is not benign, hence the monitoring blood tests. My Rheumy’s stopped worrying under 5mg.
If it were me I'd be seeking a rheumy who knows rather more about the use of methotrexate (MTX) in PMR!!
If you are down to 4mg despite the poor start you got thanks to your doctors it is ridiculous to add in MTX - because you don't use it INSTEAD of pred, You take it alongside the pred and it may, or may not, allow you to get away with a lower dose of pred. But you are already at a very low dose of pred and ahead of the curve on getting to it: the median time to get from 15 to 5mg pred is about 18 months. You are doing fine. MTX does work brilliantly for a very small number of PMR patients but they are exceptions rather than the rule. It has its own adverse effects which can be quite unpleasant. If you were stuck at 14mg/day then there might be a justifiable reason for adding MTX - you aren't and even if you were to get stuck at 4mg, that is not the end of the world. Adding in MTX doesn't guarantee getting off the pred so you could be on both and have even more side effects for no benefit.
Plus, at this stage you need to taper the steroids slowly because your own adrenal function must take over again as the pred dose approaches zero - it is downright dangerous to just stop pred even at what is apparently a low dose and I am absolutely appalled that a doctor is suggesting it.
As for the AA - it appears to be pretty much standard procedure to hand it out together with pred. I took 4 tablets and then agreed with a different GP to wait for my dexascan results to see if I needed it. It was decided I didn't, my t-scores were really good, the hip score was normal. I have just had another dexascan (have had 4 or 5 since that first one) and the hip score is still almost normal. That is after over 15 years on pred, most of it at above 10mg, sometimes well above 10mg.
My spinal score is a bit less good. Originally it was -1.3, no need for anything more than calcium and vit D. At the last dexascan 3 and a half years ago it was -1.6 and I expected to be told to take something but the osteoporosis guru here was happy. This last one was -2.2, still not osteoporosis but at the same time I had a spinal x-ray and they saw some compression of a vertebra which may be a fracture. My rheumy wanted me to start zolendronic acid infusions to stablise the bone which I have done.
My view is that if they want you to take AA, then it should be on the basis of evidence you need it which means a dexascan. They aren't 100% perfect but are the best we have. Calcium and vit D may be enough, if you take AA you will need those as well. What harm does it do? In the short term it is OK but the longer you take it, the more potential problems are associated with it. It is recommended you take a drug holiday after about 2 to 3 years maximum to reduce the risk of porous bone forming which paradoxically is weaker than normal and can lead to a particular form of femoral fracture. It causes some people gastric problems and is a bit of a pain to take - even if it is only one day a week. And the more medications you are taking - the more potential problems there may be. Drugs are tested on their own for adverse effects but some problems only appear when you are taking 2 or 3 drugs together - the more you take, the greater the risk. So only taking what you NEED makes sense. Had I continued with the AA, I might have been on it for all that time without needing it.
It does seem to be a bit of a "let's jump on to the band wagon" in prescribing MTx as a steroid sparing agent recently. What data is out there to support this? I was on it for over a year, saw no improvement and stopped taking it 4 months ago. I feel so much better without it, and am slowly reducing my pred. That said, it may well work for others so keep an open mind. However, why try it at 4 mg of pred? One wishes they would provide the rationale for their decision making to aid patients understanding. This is not to question their expertise, but to inform the patient.
Prof Mackie is starting a study but it is going to be years before we get any meaningful results, There was also one started in the Netherlands using leflunomide but it was just before Covid struck and of course everything stopped then. What infuriates me is that every country does its own thing and despite OMERACT's best efforts, there are, as yet, no standardised criteria so you could pool all the results to get far better powered study conclusions. So everything done and written up in a different country is ignored and the English-speaking nations in particular are almost racist about things done elsewhere even though they are published in English.
There is no rationale for introducing MTX at 4mg pred - it is crazy. But there seems to be a trend to combine 2 or even 3 immunosuppressants - with little or no idea about what that may be doing to the patient's immune system for the long term. I know immunologists have been concerned it is increasing the risk of cancers in the longer term. The other bit that gets me is the insistence on the part of many doctors that MTX has no adverse effects and is a far better drug. Never sure what they mean by that!
I have no objection to them trying it for patients struggling to reduce the dose of pred because for a small cohort it DOES work very well. But they must also be willing to allow the patient to stop, without penalty, when it doesn't work in a reasonable time or if the adverse effects are unacceptable to the patient. It is bad enough having PMR - then expecting a woman to accept loss of their hair and the resulting mental health effects for a drug that is not guaranteed to get the patient off steroids.
I had same success as you with prednisolone, on same dose. My dr has weaned off every month. Down to 9mg I had a cold & symptoms returned though not as bad. Kept me on 9mg for longer. Normal again although I fear that the PMR is always lurking in the background just waiting its chance if I feel unwell from something else.
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