PMRGCAuk
7,065 members11,231 posts

First visit to doctor since starting with PMR

Hi everyone, I had my first visit with doctor after 4 weeks on 15mg, he wants me to take 15mg for 4 more weeks, then blood test. If he feels it’s ok, wants me to drop to 2 tabs a day, i.e 10mgs and then slow decrease after that, havnt seen anyone on here take that high a drop so early on! Also he has given me calcium vit D tablets BUT also a prescription for AA. Havnt taken them, should I go back and challenge him for a Dexa scan,? There isn’t any history of osteoporosis in my family and he didn’t even ask that!

Help and advice please by the way feeling great, no pain, wrinkles on face shooting out,

Thanks

22 Replies
oldestnewest

Hi Jo,

No way, much too big a reduction. 15mg to 12.5mg is a recognised reduction, but many find that too difficult. Don’t know where he’s getting his advice from, but it’s a recipe for disaster.

Yes you do need VitD& Calcium, but unless you have family history of osteoporosis and a DEXA scan confirms necessary then you don’t need AA.

Request a DEXA scan, and push for smaller reduction.

Good luck,

This may help you and him

pmrgca.co.uk/assets/files/z...

3 likes
Reply

Thank you so much Dorsetlady

Reply

I don't recognise your doctor's protocol. What is your condition? How long have you had it?

Glad you feel great for now though.

Reply

Take your calcium and vit D, ask for a blood test to check both and a dexascan. Don't take the AA until you have a dexascan result. Then discuss it.

It MIGHT work - the first time I was on pred I took 15mg for 2 weeks, 10mg for 2 week and 5mg for 2 weeks. I was still fine on 5mg - I certainly wasn't on zero so had to start again! And I never got below 10mg again for over 4 years.

I would say I wished to go via 12.5mg at the very least. If that works all well and good. If it doesn't - ask to go 1mg at a time. In tapering no reduction should be more than 10% of the current dose - 1.5mg at 15, down to 1mg at 10. That was established by top experts in pred use and tapering in the USA some years ago.

The blood test is meaningless except to see if you have got the markers down to normal levels if they were raised at diagnosis. It doesn't mean the PMR has gone away - it just means that you are taking enough pred to manage the inflammation at present. That might be the case at 15mg, not at 10mg. Some people don't develop the raised markers as long as they are on pred - but the PMR is still there. Why risk a flare?

2 likes
Reply

Thank you so much, am trying to speak to him today.

Reply

Hi - think you're coming down too quickly. I started on 20mg 18 months ago and now down to 5 going to reduce to 4 next month. Needs lots of sun. I take vit d drops as more powerful - been seeing a holistic lady. Hope this helps.

Reply

Thanks Brandon

Reply

The same happened to me put me on vit d also aa refused to take aa insisted on Dexa scan results ok on borderline

Reply

Hi Rosebud, have kept off the AA?

Reply

Hi Jo, I thought I would respond though as I had similar plan with my Rheumy initially.

Pleased you are feeling great at present and that the wonder drug pred is doing its job. I agree another month at 15mgs will give pred more of a chance of getting the inflammation under control. Only when this is achieved can you begin to consider tapering.

The initial drop to 10mgs from 15mgs (on alternate days) did not work for me, but for others it does, so you won't know until you try it. Four months on I am still trying to go from 15mgs to 12.5mgs despite good blood results. As PMR will tell you the pred does not treat the underlying cause of the inflammation but merely manages the level of inflammation and all cases are definitely individual. I wouldn't try second guessing it at the moment but just go with the flow.

I would however absolutely and certainly insist on DX scan BEFORE taking AA. I have had the scan and do have Osteoporosis, but have refused AA at present and am looking at alternatives. This is because of how AA affected my mum and sister and also what I have read on this site. Also AA can only be taken for five years max, so to take it so soon may stock up problems for later. In your case why take medication if there is no need?????? My DX scan came through quite quickly so you shouldn't have to wait long.

All the best on your PMR journey.

Reply

Hello. Just a point about osteoporosis medications. I'm a bit concerned you say they can only be taken for a maximum of 5 years. I have been taking a weekly dose of alendronate since April 1997 - nearly 20 years! So far I have had no bad effect. Started with Didronel, then Fosamax, now just called Alendronate. Still taking it.

Reply

That is the FDA recommendation - and in fact it has been reduced to less more recently. After that time there is a risk of other side effects, including spontaneous femoral fractures due to the formation of cracks in the bone which weaken rather than strengthen.

1 like
Reply

Thanks for the quick reply - and all your other extremely valuable help - PMRpro. I am certainly concerned about this Alendronate question. The doctor(s - I seem to have a new one every few weeks on the NHS) - have continued to prescribe my weeky dose all this time without question. I started out in the 1990s having yearly osteoporosis scans, but St George's Hospital stopped this as they said it was too expensive. I will ask my current doctor if I can have any sort of test now, especially as Prednisolone may influence osteoporosis. (I started on 15mg pred 6 weeks ago and am reducing by 1mg a week to 10mg when I see the doc again. Do still have a bit of an ache from time to time in the shoulders and hip, but hoping this is ok.)

Reply

My biggest concern after all that time would be that your bone density is very high - and that isn't good either.

At a guess you were put on bisphosphonates when Fosamax first was being trialled and the scans were paid for - until the study stopped. I'd definitely broach this with a GP - and don't take no for an answer.

1 like
Reply

Can't thank you enough for your advice. I had no idea there was a problem with this until yesterday! I will raise it with my doctor and get a bone density scan as soon as I can. I will let you and everyone here know the results.

Reply

I suspect there are a lot of doctors who don't know - the company that developed it sold Fosamax to them as the miracle cure which would prevent all #NOFs (broken hips) in the future. That was 20 years ago.

A similar substance was used previously for patients with Paget's disease but in relatively small numbers. It is only after several years of millions of people taking it that the truth is emerging. You would think that people (especially doctors) would have started to be a bit more sceptical when companies claim "this drug has no side effects"

1 like
Reply

PS What is a dexascan? My scans in the 1990s were on a big scanning machine - the one they said was too expensive. Is that a dexascanner?

Reply

nhs.uk/conditions/DEXA-scan...

I'm sure that will have been what they used then - they have been around since the 1960s. They weren't that common in the NHS at first - the machine is expensive and then the running costs are not low as you need a skilled technician. However, they aren't half as expensive as doctors seem to think and far cheaper than a patient with a broken hip! But when a doctor claims a difference in cost of 50p/month makes one version of pred too expensive you realise where they try to save money.

1 like
Reply

Hi Valeriebeeby, I only know docs stopped AA ( about two years ago?) for my Mum stating it shouldn't be taken for more than five years. At the time we didn't question why, but it looks like PMRpro knows abit more.

1 like
Reply

Thanks Marilyn1959. Glad you mentioned this as otherwise i wouldn't have known I had a problem - well, let's hope a possibleproblem.

1 like
Reply

Hi Jo

Great that you've got rid of pain and wrinkles - same here!

As others have said, we're all individuals, so we don't know how we'll respond to the pred, but better safe than sorry. Better slow but sure and maybe not have to go back to square one. (see below!)

I was on 15mg for 2 months, then 13mg for a month, then 12mg for a month, 11mg for 2 weeks and then had to stay at 10mg for 2 months because of symptoms.... just to give you an idea of how much slower that was, than your doctor is asking.

Foolishly (in hindsight) I reduced at 1mg a month when I get down to 10mg and had a flare of my PMR at 4mg, so had to go back to 10mg this summer. I'm now tapering at 0.5mg a month and am approaching 7.5mg now.

If you are on plain white, uncoated pred you can get a pill-cutter from the pharmacy and cut the 5s in half to get 2.5mg! Pred also comes in 1mg tablets and the gastro-coated comes in 5, 2.5 and 1mg, as you can't cut them.

I had a DEXA scan 8 months after starting pred and was found to have osteoporosis, so I take Risedronate, which is a bisphosphonate, like AA. I didn't want to, but my GP said my bones would be even worse after taking pred for x months or years more, so I felt I had no choice. I also had my low vitamin D corrected and take calcium and vitamin D daily.

Have a look at this link to see my doses and blood results which clearly show how I flared as the pred was reduced too quickly for the inflammation. We live and learn!

healthunlocked.com/pmrgcauk...

Take care Jo.

2 likes
Reply

Rugger thanks a lot for details of your journey. I shall look into the charts as a way to keep up to date with my progress. Thank you, Jo

Reply

You may also like...