I’m now on my third week of 25mg Pred as a recently diagnosed PMR sufferer, and likely to be on it for some time, so Consultant has also prescribed me omeprazole 20mg daily, evacal D3 1500 mg twice a day and alendronic acid 70mg once a week, all to help with the side effects of Pred! Does everyone else take these? I’m also on Leflunomide 20mg per day and Amitriptyline 20mg in the evening. Apart from the Amitriptyline, I take everything else first thing in the morning at breakfast, it seems an awful lot of pills to take in one go! Am I right in doing that? And also, pls can you advise on the Alendronic Acid.. consultant said it’s important as helps the absorption of the evacal D3 into the bones, but I think I’ve seen inference on here that there might be an issue with it?? Do people take it? If not, why not if it’s been prescribed by the consultant?? Grateful for any advice! Thanks
Advice on meds that are prescribed with Pred - PMRGCAuk
Advice on meds that are prescribed with Pred
Hi -
The guidelines do say AA - but we recommend you request a DEXA scan to see if it’s actually necessary - do you have osteoporosis or bordering on it. Most find the VitD/calcium (ADCAL) enough to help bones. Plus bone strengthening exercises - walking as good as anything, but HeronNS is our resident expert on she’ll be along later.
Don’t take ADCAL same time as Pred - leave at least 2 hours, most take at lunchtime if they’ve taken Pred at breakfast. It is useful to take VitK2 as that helps the absorption of the Calcium.
Many are prescribed Omeprazole or similar - that should be taken about half an hour before food. Not every finds it necessary- if you take Pred with a good quality yogurt you may not need it, unless you have digestive/stomach problems.
Never took Amitriptyline nor Leflunomide so can’t help on that - but someone will.
Thank you so much for your reply and very helpful info.. I’ve replied to HeronNS which covers most of this (for some reason her reply showed up first, so I’m working my way up the replies!). I’ve never had digestive probs so agree not sure I need to omeprazole... I’ve asked below advice on coated Pred as never heard of that?! Thank you again for taking the time to reply. Much appreciated.
Hi,
Not sure if you’re in UK - helps if you put that on your profile please - but if you are first choice of GP is to prescribe uncoated Pred as it's the cheapest option.
But then they have to add in a PPI - like Omeprazole - which they don’t need to do if they prescribe a coated variety. So really there is very little difference whichever way they go - but it’s difficult to get them to understand that sometimes!
I'm just wondering where to start! Firstly, 25 kgs is quite a high dose- it's usually 15-20mgs. but if you feel Ok on it , let's not dwell on that. Next, just do some homework on the Omeprazole- if you are on gastro-resistant Pred. you may not need the PIP which does have a number of side-effects. you are right that there is a lot of controversy about AA. The advice here, and to doctors, is to get a DEXA scan so that you have a baseline on your bone density at the beginning of this journey to see what effect the Pred. is having on you. If you bones are OK and you don't have any other risk factors, you may not need the AA. Again, do your own research into this very powerful drug- many nasty side-effects.
I'm wondering why you have been put on Leflunamide? It is usually prescribed if someone is having difficulty reducing the Pred. and, even then, does not have a massively good track record in being a steroid-sparer for us. I have been on Leflunamide and it made my BP shoot up so I had to come off it. In your case, you have not even tried to reduce yet, so it seems to me it is not necessary at this stage.
I take Amitriptyline myself as I had 2 years of horrible insomnia from the Pred. If you get the insomnia then it should help you, but if it doesn't, may not be worth taking. I've never heard of it helping the absorption of Evacal. Vitamin K2 does that!
Do you think your consultant understands this illness? They don't always and my advice to you is to read all the posts here and inform yourself as we are our own experts- we have to be- as there is a lot of ignorance out there, even amongst the so-called specialists!
Wow, this is a whole new ball game, never have I come across someone just 3 weeks into being diagnosed with PMR. That seems to me, who is not a medic, a whole heap of meds to ask your body to cope with all at one time.
I will try to answer, but some others will be along and help out also.
1) Leflunomide a steroid sparing agent. Normally a suggestion of an SSA only is made if you run into some sort of problem. In 12 years I have not come across anyone who has been given pred and a SSA to start with. It is not recommended in the BSR Guidelines on the Diagnosis and Treatment of PMR, available on this site, the BSR website and the NHS website. You can read and download. Knowledge is power.
2) You need a Dexa Scan before you take any Bio- phosphonates. You need to see if your bones need anything at all.
If they do, then there are alternatives to AA. They are all on the Royal National Osteoporosis website which is worth reading now as it also tells you to help you to keep your bones strong.
Talk to your Dentist before you take it and get any work done, some dentists will not do any work on your teeth if you are taking AA.
3) I know nothing about evacl D3. Most people are given a PPI (which you may not need) especially with enteric coated tablets (the coat is to protect the stomach) and if you do get acid reflux, there is a way to help you avoid it by eating a yoghurt with or without honey in the morning. And another way (not medical) if you need to know it.............send me a PM.
4) Do not take your calcium at the same time as your Pred.
The rule is Pred for breakfast and calcium for lunch. One contradicts the other.
Make a friend with your Chemist, this is important............they will steer you the right time and also look for contraindications in your meds.
5) Amitriptyline - do or did you have a problem sleeping?
6) Which hospital are you at................just curious.
I know someone will be along soon, who will know much more than me.
Andypan was diagnosed in May the profile says so sounds like having problems on pred
Thanks so much for taking the time to send such a detailed reply. I’ve relied to Heron NS below which covers some of your queries. My rhrumy has put me on Leflunomide at same time as Pred as he says it helps lower your immune system and so should help my body stop attacking itself which is what is causing the PMR... I’ve no idea if that is right! I will def ask for the dexa scan before starting AA... I asked below about what coated Pred was and if there were any disadvantages over normal Pred, should I ask for that instead? Why don’t GPS just prescribe it routinely?? Will take the calcium at lunch, thanks for that tip. My pharmacist just told me to take the lot at breakfast! And yes been prescribed the Amitriptyline to help with insomnia... I feel I must rattle when I walk with all this lot inside me. I’ve never taken anything stronger than ibuprofen in my life before all this came along and knocked me sideways!
The calcium needs to be taken as 2x daily - the body doesn't happily absorb more than about 500mg at a time.
Leflunomide MAY help reduce the pred dose - but not for everyone. The original study that suggested it might be useful achieved remission for 22 out of 23 patients who took it. But I don't know how those patients were selected - since then the results with leflunomide have been rather more mixed. And it does have some nasty adverse effects.
I just take pred and vitamin D with calcium.
Did you have a Dexascan to see if you need Alendronic Acid? It confirmed I have good bone density luckily, so no AA needed!
I have coated pred so I do not need the omeprazole.
I also refused a DMARD like Leflunomide as I was not sure it really worked. It is supposed to help you reduce the pred.
I am not sure why you were prescribed Amatryptyline, but a lot of people do say it helps insomnia.
As the others say you are starting on quite a high dose, but your doctor does seem to be a bit belt and braces with the medications.
Thanks so much for your help and advice.. I’ve just relied to HeronNS below so it covers some of your queries too. I was prescribed the Amitriptyline for insomnia which is really bad at the moment. GP says it takes 4 weeks to work, so am hoping I will be lucky !
The enteric coated pred only seems to be available in UK. I think some doctors think it is much more expensive but it seems that is not true any more. On the other hand you save by not taking omeprazole any more. Basically the tablet is coated so it does not dissolve in your stomach and cause problems, it carries on down and is absorbed in your gut. I have not heard of any bad effects. I suppose if you are allergic to the coating you may have a problem. The only real problem is it is not possible to cut them in half. They do 1mg, 2.5mg and 5mg sizes.
Push for the Dexascan, there may be a wait for them depending where you live.
In the big picture, Omeprazole is probably worse for the bones than pred. Do not take any bone medications until you have had a DXA scan, and perhaps not even then - get back to us with your results before deciding. There is getting to be quite a lot of collective experience on the bone health sites regarding natural ways of maintaining and improving bone density.
Andypan, I've just looked back very quickly at your first post. Is your doctor absolutely certain you have PMR? One of the diagnostic tools is a reasonably rapid response to low dose pred. You do not appear to have experienced this, and your dose quite early on was increased to 30 mg. Have all the tests been run for differential diagnosis? If it is something else you would likely respond better to a different medication.
uptodate.com/contents/clini...
Thanks so much for all your very helpful advice. Consultant is as sure as he can be that it’s PMR, but says I’m atypical.. am only 51 so young etc, but he has done every other test imaginable and everything else ruled out. I was initially started on 20mg Pred by GP end of May which had no effect on pain or stiffness etc and gave me v bad side effects so he took me off that and I was referred to Rhuemy. Rheumy has now restarted me on 30mg Pred and I’m def getting some pain relief (from mid morning until late evening; but nights and mornings v bad). So it does appear to be working somewhat and reinforce the PMR diagnosis. He says some people are atypical and only get relief at a higher dose. Others are ‘luckier’ and it works lower dose etc. I was worried all the other pills were bit over kill so am going to see GP next week to ask for dexa scan before taking the others. Good advice. What is the coated Pred and should I ask for that? Why don’t they just prescribe that for everyone, so avoid having to take the omeprazole? Does coated Pred have any side effects that are worse than normal Pred?? Thank you!
Well as PMR is a diagnosis of exclusion they seem to have done due diligence. Are you in the UK because coated pred is only available in UK. I have heard that it used to be more expensive than plain, but after price of plain was increased difference not so much, and with addition of a PPI to the pred the cost difference vanishes. Someone in UK will have the accurate information.
I would have suggested you try ranitidine instead but with the worldwide recall of that drug because of contamination one can't really do that just now.
As it appears the PMR diagnosis is the most likely please don't let anyone rush you when you start to taper. Remember the wise words which I believe originated with PMRpro: "It isn't slow if it works". You've already been up and down a bit so it would be good if you get to the place where you feel as well as you are going to (at least 70% improvement) before starting a careful taper. Never any more than 10% at a time and long enough at each level to be sure it's still doing its job.
Good luck!
An odd question, did you at anytime experience trouble hearing?
If you get acid reflux............one lemon, preferably unwaxed, microwave for one minute (more juice.........divide into three and talk with water before your meal.
Ref: the Alendronic Acid. I took it faithfully for 5 plus years, together with ADCAL, as I was assured it would protect my bone density. At the start of this year I had a second bone scan, and it revealed 10% loss in my spine and 25% loss in my left hip. My Rheumatologist said he did not rate this drug and arranged for me to have a yearly infusion at the hospital, which will hopefully restore the density over time. Whether I have been unlucky I do not know. The only way you can tell if the tablet works is to have a bone scan sometime.
The Omezaprole is to stop the steroids causing stomach ulcers.
Have you had a dexascan to see your baseline bone density? No dexascan, no AA in my book. If the dexascan shows osteoporosis - fair enough.
At my last dexascan I had been on pred, at or about 10mg/day, for the nest part of 7 years. There was very little change in my bone density from baseline, 2 months after starting pred, and still very formily in a normal moderate osteopenic range. I took 4 doses of AA before discussing it with a different doctor. I have never needed omeprazole - luckily, as that is just as likely to lead to reduced bone density as pred!
As a PMR diagnostee, what sort of response have you had to 25mg pred and leflunomide right from the start?
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