New PMR sufferer needing help.. please....

[Heather-gwynne]

Hi there guys,

I am a new member, and happy to say I'm not a fellow sufferer, but the wife of a fellow-sufferer. My hubby, on the advice of our doctor, and after many many different tests, was referred to a French rheumatologist. (My husband is from California, I am Irish, and we live in the south of France!!! -complicated or what?). PMR was not actually mentioned as the cause of his muscle loss, weight loss and increasing pain, but he was put on 40mg of Prednisone immediately which caused so many side effects, the worst probably being several months of not sleeping any more than a few hours each night. He was becoming more like a 'zombie' each day. Life became so miserable for him and without fully realising the seriousness of his condition (as you all explain so well), he decided that Prednisone was not for him, and he would rather cope with the pain as have all these other side effects.

Now we are going back to the rheumatologist and starting from scratch, as it were. We now know what the diagnosis was, compliments of our new GP, and hubby realises he must 'bite the bullet' and take Prednisone, or indeed if there is any alternative steroid which will not have such disastrous side effects. Maybe some of you out there are on a different medication.

How wonderful to have seasoned fellow sufferers who kindly share their personal advice and knowledge with newcomers such as us. I really appreciate the feed back on this site. As you say, the medical profession seem quite reluctant to discuss this condition, certainly here in France.

Any advice will be greatly appreciated.. Thank you, Heather..

[piglette]

I am so sorry for your husband. Did the pred help his pain? I am very surprised he was given 40mg if he has PMR, the normal starting dose is around 15mg - 20mg. This would probably have meant he did not have such bad side effects too. Insomnia is a side effect and I have discovered one needs to just give into it. I listen to the BBC World Service in my waking moments at night.

[Heather-gwynne in reply to piglette]

Thank you piglette for you prompt reply. As we were totally ignorant of the actual diagnosis after our visit to the rheumatologist who prescribed the 40mg, we just thought, as you do, that the doctor knows what he's doing!! This time, when we go back I really want to be much better informed and glean as much knowledge from you wonderful people out there, so that we can ask the proper questions. Hubby complained a lot about blurred vision after a few days on the Pred but his pain miraculously eased considerably. Maybe, as you say, a lower dose would give him pain relief and not have the same awful side effects. Will know better after our meeting with the Rheum. Thanks again, really appreciate your feedback.

Heather..x

[piglette in reply to Heather-gwynne]

Good luck with the rheumie. Pred can cause blurry vision as a side effect, I am so glad it seems to have gone away. Do you know why your hubby had such a high dose?

[DorsetLady PMRGCAuk volunteer]

Hi Heather,

Sorry to hear about your husband. What tests did he have prior to being prescribed steroids? 40mg is quite a high dose if it is PMR, or did the doctor think it might be GCA? Closely aligned to PMR, but with some more serious consequences if not diagnosed/treated early enough.

I can well appreciate he felt rotten on Pred, and well remember the sleepless nights. Unfortunately, Pred is the only drug that will control the inflammation that is caused by the underlying PMR or GCA. One lady who lives in Italy takes a slightly different version, but it still a steroid with the usual side effects I believe. I'm sure she be along with advice very soon.

Hopefully when you see the Rheumy again he will explain exactly what you hubby has -PMR or GCA and get him on the appropriate dose. He obviously doesn't want to be on a higher dose than necessary. But he does need to initially be on a high enough dose to get the inflammation under control, the art then is to try and lower the dose slowly until you reach the optimum dose that keeps that inflammation under control.

Unfortunately PMR and GCA are not like other illnesses - they seem to have a mind of their own, they come without warning, hang around for anything between 2-5yrs (sometimes longer) and then go into remission, if you're lucky. They can't be cured, but they can be controlled - by Pred!

It's true that Pred does have some nasty side effects, but once your body gets accustomed to them, and you find the right dose, then they do give you back your quality of life.

Sure you will get lots more advice.

[Heather-gwynne in reply to DorsetLady]

Thank you so much for this very useful information. Don had so many blood tests and bone scans, inaugurated mainly because of his scary weight loss and loss of muscle. In a short time he lost around 25 lbs weight although he has a great appetite and always hungry. The rheumy who examined him thoroughly and studied all his test results, did not actually tell us what his diagnosis was, but put him on the 40g Predizone immediately. It was later that we discovered that the rheumy's letter to Don's GP stated what his diagnosis was. We did not know the correct questions to ask, but thanks to all you very kind people we are learning fast, and certainly on our next visit, I will be very well informed. You mention GCA - this is something new for me, but I will be checking it out too. Don is lame now and obviously trying to save his legs when he is walking. He has shoulder and back pain and has great difficulty sleeping. His muscle loss is scary - he can hardly lift a small jug of water on the dining table to put water into his glass. This was the man who has spent all his life diving and surfing in California and consequently had a very strong upper body, but sadly no longer. I look forward to him getting the meds under control and as you say, getting back his quality of life.

Thank you again for your input.. the old saying 'ignorance is bliss' is not my motto any longer, but rather 'knowledge is strength'. I am gleaning so much knowledge for people just like yourself.

Heather..x

[tgca]

Hello Heather, I am certainly no expert with steroids but have learnt more about my illness (GCA), doses of steroids, tapering and side effects of meds from the advice on this site than from my GP and rheumatologist. Everyone here is so helpful and their combined knowledge is invaluable. Steroids are not nice (understatement of the year) but the body seems to adjust and hopefully the sleepless nights will subside as your husband begins to reduce the dose. Has he been prescribed any other meds? Good luck with sorting everything out.

[Heather-gwynne in reply to tgca]

Hi there,

I agree totally with you - had it not been for this site, I would still be so ignorant of so many aspects of this disease. Don was prescribed the 40mg Pred from the Rheumy with no further consultation appointment. He was not given any other meds. It was later when the sleeplessness took over that we returned to his GP to get some sleeping tablets. I didn't know anything about reducing the dose - in fact, I didn't know anything about PMR !!! Now I'm learning fast. Thanks again for your encouragement.

Heather.. x

[HeronNS]

I don't know if I read your post right. Was your husband prescribed 40 mg prednisone and not given any plan to taper to a much lower dose over a reasonable period of time? Most PMR patients start at somewhere around 15-20 mg where they stay for a few weeks (a month or thereabouts) to make sure inflammation is properly under control, and then taper very slowly to the lowest dose that continues to effectively control PMR symptoms.

[Heather-gwynne in reply to HeronNS]

Hi , you read it exactly right. As I've just written in the post above, Don was prescribed 40mg Prednizone at his first consultation with the Rheumy, with no follow up appointment being suggested. Now that I read what all you wonderful people say about tapering the meds, I am shocked that this was never mentioned. We have asked for another appointment now, and I will be asking all the right questions this time.... Thank you for your help,

Heather.. x

[PMRpro Ambassador]

This is a link to a post on another PMRGCA forum where we keep a set of links to useful information about the conditions and their management so they are easy to access. Included is one we call the "Bristol paper" which is as easy a description of a sensible approach to managing PMR as you will find! Diagnosis and dosage and reduction scheme...

Does your husband HAVE to see the rheumatologist - I'm assuming it is the same one? Can your GP not provide the prescriptions for pred? I'm just a bit concerned you may go through the same poor level of care he got the first time. I know a couple of people in southern France who are managed by their GPs after an initial rheumatology appointment which is similar to what happens in the UK and here in Italy.

40mg is far too high a dose to start with for PMR - the most recent international recommendations say "the lowest effective dose in the range 12.5-25mg ... never above 30mg" (you will find the link to the 2015 ACR/EULAR Recommendations amongst those I gave you above).

All corticosteroids have potentially the same side effects and everyone is different anyway. i did fine on prednisolone, methyl prednisolone (Medrol) was awful and prednisone in the form of Lodotra has been superb. The major difference is in dose - use the right dose (low to moderate) and taper to the lowest dose that manages the symptoms and the problems will be minimised. Weight gain CAN be managed as a group of ladies on another forum have been proving in the last few weeks: all have lost considerable amounts of weight using Slimming World even though they are still on longterm pred. It can be done. Some of the other side effects can also be managed but there are 82+ listed - he won't develop them all! I have next to none.

I am on Lodotra, a form of modified release prednisone which you take at 10pm and it releases at 2pm - no early morning stiffness at all and it does seem to allow people to manage on a slightly lower dose. It is available here in Italy and in Germany on their healthcare systems. I have no idea what the situation is in France - it costs considerably more than ordinary corticosteroids and that obviously plays a role.

Where on the south of France are you? maybe it is time to get a support group going amongst English speakers there!

[Heather-gwynne in reply to PMRpro]

Hi PMRpro,

Wow!! what a lot of useful information - thank you so much.

My husband's query all the time when he went for blood tests and bone scans etc.. was as to the cause of his muscle loss. No test showed anything untoward, and so Don was almost at the desperation stage as to why his muscles seemed to be wasting away, his body pain was increasing and he was just needing to sleep through various periods during the day.

He was referred to the Rheumatologist by his GP and it was at this appointment that the Prednizone 40g was prescribed. The Rheumy did not tell us what his diagnosis was, and we assumed that what was prescribed was a med to help with the pain and the muscle loss. He did write a letter to the GP saying that his diagnosis was Polymyalgia, but the GP never mentioned this letter to us. He kept this information to himself. It was just recently, by accident, that we discovered this letter existed. Doesn't give you a lot of confidence in the people who are looking after your health!!

We have requested another appointment with the Rheumy - this seems to be how the system works in France, as opposed to the UK which I'm used to. The local GP sends the patient off to all the specialists for their opinion, and then the GP prescribes whatever the specialist has recommended.

Your meds seem to be working well for you and that is wonderful; I have taken a note of the names of the meds which you are using, and will see if such a thing is available here.

We live in a very beautiful old watermill in a little village called Caudebronde which is situated in the Aude department of the Languedoc in the south of France. We would be more than happy to help with any information which would enable a group of sufferers to be able to get together in this area. Just let me know how I should go about it.

Thank you for all your valuable information,

Heather.. x

[PMRpro Ambassador in reply to Heather-gwynne]

You say your husband had muscle wasting BEFORE the diagnosis? Although it does happen it is rare in polymyalgia rheumatica - but it can be typical of polymyositis. Has he had a CPK or CK (creatine phosphokinase) test done? That would be raised in polymyositis, not in PMR.

No - not telling me things is something that would have me voting with my feet I'm afraid! It isn't so different in the UK really - the GP sends you to a specialist who is always in a hospital but the GP more often than not then manages your treatment unless it is complex.

Unfortunately the others are nearer Limoges - long way! Neighbours of ours in the UK moved to near Carcassone some years ago - haven't been there yet though. Sounds lovely! I'm hoping to get OH to take our campervan along the Med coast to southern Spain for the first time in February - have been as far as the border before but never any further. That was in the days of bail bonds!