Hi everyone.

Hello fellow PMR sufferers.

My story so far,

I am a 62 year old reasonably fit male. (ex rugby player, skier, squash player and all round active person)

3 weeks ago I was diagnosed with PMR.I have to say at this point that I am still not 100% comfortable with the diagnosis, but maybe I'm just in denial.

Although I am British, I live permanently in Cyprus where there is a serious lack of rheumatologists. I pay for all my medical treatments.

The first symptom I presented with was constant headaches, although I now realise that this disease has probably been creeping up for many years.

I have had severe back aches, shoulder pains and fatigue for probably around 5 years. All this was put down to osteoarthritis, spinal stenosis and degenerative disk disease. even though MRI scans only showed fairly minor abnormalities

In Jan this year I had an ACDF of C4-5 which seemed at first to give some relief from the neck/shoulder pain and sporadic headaches, but was unfortunately short lived.

I started by wasting a lot of time and money going to neurologists, ophthalmologists and several other gists!

I eventually saw what are here called, specialist consultants. ( like a very knowledgeable GP.) He was concerned that the headaches could have been the start of GCA and together we decided on a strategy that, although I was not totally happy with, I did accept. We agreed that he would prescribe prednisalone, but I would not commence treatment unless I had any other symptoms eg. visual disturbances. If this occurred then I would immediately start taking 60mg Prednisalone and contact him immediately.

I was pleased to find that this proved unnecessary.

However 4 weeks later I reached a state where I was experiencing so much joint stiffness first thing that I was virtually unable to dress for the first hour or two.

At this point I decided it was time to contact a rheumatologist.

Unfortunately the best guy on Cyprus was on his way to the UK at the time I contacted him, and was going to remain there for several months!

However he contacted my original doctor and had me send my medical history and some blood test results via email and remotely diagnosed PMR.

He put me on 15mg Prednisalone and my symptoms fully resolved within 24hrs and my elevated CRP and ESR came back to normal levels. From this he confirmed that I had indeed got PMR.

Today, after just 3 weeks, I have reduced to 12.5mg which he wants me to stay on for another 3 weeks.

He has then told me to then reduce by 1mg every 6 weeks and revert to the next higher dose on any relapse.

OK that's me.

Now the questions!

In Cyprus the only Prednisalone available are the 5mg white, cutable tablets and the 2.5mg coated uncutable.

On searching the web I am finding it very difficult to source the 1mg white tablets.

Does anyone have a link please?

I am able to find 1mg Prednisone but not PrednisALone. I assume I cannot substitute one for the other.

Thanks for taking the time to read this.

Brian.

[PMRpro Ambassador]

Prednisone and prednisolone are almost the same in equivalent dose, the difference is that prednisolone is the active form: prednisone is processed by the liver to form prednisolone. So it is better to have all one or all the other but it probably doesn't make much difference. If you can get all prednisone, that's ideal. Beware you don't buy prednisone in the form of Lodotra/Rayos as that is also a coated version which comes in 1, 2 and 5mg tablets - it is very good but costs far more than any other sort because of the coating. You take it at 10pm and it releases at 2am, so avoiding the early morning stiffness without getting up in the middle of the night to take tablets.

Pharmacies should be able to provide you with a pill cutter to cut the cuttable tablets in half - the coated tablets are absorbed differently and while some people manage fine with mixing them it is more usual to have the bulk of the dose in coated and top up with non-coated. You will find 1mg tablets difficult to find - as far as I know the UK is the only place that uses them, Italy doesn't even have pred, just 4mg methyl prednisolone tablets!

However - why does a rheumatologist who works in Cyprus tell patients to reduce 1mg at a time if you can't get 1mg tablets locally?

Some people have used this scheme to reduce the dose in 2.5mg steps:

healthunlocked.com/pmrgcauk...

It is also a good way of identifying what you will be looking for: the lowest dose that manages the symptoms as well as your starting dose. It is worth a try.

I may be wrong but I doubt you'll get a link from any of the 3 forums - all based in the UK and so patients don't have to purchase their pills.

I'm sorry - given your description of symptoms and your response to pred I think you will have to abandon your Egyptian swimming holiday and come out of denial! It sounds very like PMR and the response to pred was absolutely typical. Do continue to watch out for the headaches - 1 in 6 patients diagnosed with PMR go on to develop GCA.

If it is any comfort, men seem to ride the PMR train rather more easily than women. Being fit to start with also seems to allow you to do more - but another warning: do NOT go back to normal activity just like that. Your muscles remain intolerant of acute exercise as the actual cause of the illness is an underlying autoimmune disorder which is barely affected by the pred, it just manages the symptoms. You will be able to do a lot more in time but for the moment you have to build up your training very much more slowly than you are used to. Learn your limits and stick to them and build up in very small steps until you are back to approaching normal.

[Hidden in reply to PMRpro]

Thanks for the reply PMRpro,

I have just found 1mg prednisone from an online pharmacy in the states.

Unfortunately they don't seem to have prednisalone so I guess I'll have to swap.

Strangely I have found 1mg prednisalone as an animal medication from a vetenery supplier, but I'm not sure of the quality control in that situation.

I think the reason the prof of rheumatology has prescribed 1mg in Cyprus where it is not available is simply because he spends very little time here and practices mainly in the UK now, despite the fact that he is actually Cypriot. As I said rheumatologists are very thin on the ground here. They don't have any in the national health system, only in private practice.

I might give that scheme a go. It sounds good to me, and if others have had success with it it's got to be worth a try. It sounds like it needs fairly careful management though. I think a daily/weekly pill box might be in order.

Regarding going back to normal exercise, you are right about that. I tried to jump on the treadmill the other day and I knew about it afterwards. However having said that I actually feel better now than I have for years. With the exception of feeling very bloated all the time. I guess this might not last but it's good while it does.

My Physiotherapist has suggested simple stretching and core strengthening exercises for the time being, no aerobic. Thoughts?

[PMRpro Ambassador in reply to Hidden]

Just write it out on a calendar or in a diary. It is about to be used in a clinical study in the north of England and has been approved by several rheumatologists who have been shown it by patients.

Do anything you can manage - your physio is right enough but you may manage a bit more. Walking is good - strenuous aerobic stuff runs the risk of overtiring your muscles and then they will ache until they recover. I managed PMR for 5 years without pred - I did aqua aerobic classes in a warm pool every morning and having warmed up with that I could manage Pilates and Iyengha yoga that was adapted a bit. If you do Pilates or anything in the gym don't do 10 reps and repeat - do a few with much lighter weights than you would normally, even no weights at first, and don't repeat. Keep it low and short and rest for as much as you work. If you do half an hour like that one day and are OK, then add a bit, just a few mins more.

I always rested a day between to start with - at the beginning of the ski season I did 3 very short runs with rests on the lift in between and always had at least one day rest. That was in December. By mid-Jan I could do maybe 9 or 10 short runs with a break half way. By February I was happily skiing every day and soon after could do the odd longer run. There was no way I could do a long run early in the season - the rests are as important to let your muscles get some oxygen back and clear out some lactate. The whole point is that they aren't recovering the way they do normally - so don't overload them. Learn your limits and stick to them or you will have 2 or 3 days as if you'd gone into a rugby match without any training!

Pred is used a lot in vet medicine - there is a thread somewhere on another forum I think where people have just discovered that. And no - I have no idea about the quality control there! Prednisone is used as fairly standard in the USA, prednisolone in the UK.

Yes - from what you say you have probably had PMR for a few years, as I did. Mine simply wasn't diagnosed but I still remember the miracle of the first dose of pred!

You'll also find a load of info at the end of the links in this post on another forum:

patient.info/forums/discuss...

Unfortunately there isn't this set of links available here - so you'll have to look there!

[HeronNS]

pharmacy2u.co.uk/productdet...

Don't know if that is what you were looking for?

[Hidden in reply to HeronNS]

It is HeronNS but unfortunately they don't seem to ship outside of the UK and they are VERY expensive. at least 4 x the price here in Cyprus. I currently pay 4.60€ for 100 X 5mg and 2.71€ for 100 X 2.5mg.

Thanks for that anyway.

[HeronNS in reply to Hidden]

I've never had to deal with anything like this, but why won't your pharmacy order in a supply for you at a normal price? Especially as your doctor has prescribed them? Or maybe your doctor could bring them to you on his next trip. And maybe I've been on the Internet too long today. Happy, and pain free, New Year!