Hi all. Had my first appointment with rheumatologist yesterday with highly predictable result. He thinks I may not have PMR at all but Fibromyalgia! I explained to him my 'journey' since being diagnosed in January. He said that on 15mgs of Pred, I should not be having any pain at all. He also said that my original response of 50% pain reduction was not dramatic enough to indicate PMR. He has asked me to immediately cut the the Pred to 12.5 per day and then to ten by the end of a month. I told him that I had tried to cut the Pred three times (the last time exceedingly slowly) and had to return to 15mgs every time due to severe pain returning. He told me to ask my doctor for a tablet called Duloxetine to take while I reduce. I have never heard of these. Has anyone been given them and what happened? I will try his suggestion (as, like all of us, I would love to come off of pred) but I am certainly not looking forward to it! At the end of the appointment he asked me what I thought and I told him that I knew what he would say beforehand due to reading lots of accounts on this forum. He looked highly put out and said 'Well at least I,m predictable'!
Also yesterday, I had my appointment with the cardiologist. After another ECG which still shows 'peaked p waves' he told me this is most often caused by lung problems, so another round of tests to go through, starting with a twelve day heart monitor being fitted this Friday, a spirometry test also later this week and then a CT scan over the next couple of weeks. Apparently two possibilities: Pulmonary embolism or COPD. Lovely. What a choice! Anyone else had any of this. Not sure if it is anything to do with the PMR/Pred or if it would have happened anyway. Oh and sorry to harp on but does anyone know if there is a link between eggs and acid reflux? Had the worst attack ever on Sunday morning after eating an egg sandwich, even though i am now on 40mgs of Omeprazole daily. Sorry, a bit long winded but had to get all that off my chest!
This is getting boring - it must be the time of year.
There is a fundamental difference between PMR and fibromyalgia: fibromyalgia pain does not respond to pred. I know no one who has fibro where pred has made the slightest difference but I DO know a few people who have both. Just because you didn't have total pain relief is NOT an indication it is not PMR. I don't know where they get the idea that pred removes all pain - hardly anyone ends up totally pain-freefor some considerable time.
However, in fairness to him, if you can't get below even 15mg without a return of pain even going slowly it does cast a bit of doubt on a purely PMR diagnosis although I don't know that I would have plumped for fibromyalgia - another inflammatory arthritis would be more likely.
There are two forms of Duloxetine - it is an antidepressant used one way and used for neuropathic pain in the other. This is link to an article on this site explaining its use in pain
If you are under a cardiologist are you on anticoagulant therapy (warfarin or the like)? If so check with them or the pharmacist because in one reference it has a warning about care in using duloxetine for patients who bleed easily. If you DO have a pulmonary embolism you WILL end up on something like warfarin.
It explains in the article I've given you the link for that there are a few similar drugs for neuropathic (nerve) pain and gabapentin and pregalbin are often used in fibromyalgia - this is just another.
I suppose it is all worth a try. Where do you live? Which hospital are you under? I won't ask the name of your consultant - that's not ethical!
Hi Eileen. Not on any blood thinners yet as not been diagnosed. Thanks for the link. I'll have a read. As I am already on Tramadol for Neuropathic pain I'm a bit dubious about adding the Duloxetine. I hope he's not asking me to give up the Tramadol. That's what keeps my leg mobile (spinal stenosis). I was already tried on Gabapentin and pregablin and couldn't take them due to side effects. I did explain all this to him but he really was not listening just got cross that I dared to question his judgement! I get a lot more helpful advice from yourself and others on this forum than I ever get from the medical profession. By the way I live in Devon and am under the Royal Devon and Exeter hospital.
Hi Debbie Have seen Eileens reply which as always was very thorough. As to egg sandwich it was prob what the egg was cooked in. I find I have really bad reactions to different fats or oils. Try using a spray to fry it in and now aff to cook one for my lunch cos you have set me off!!! Carol
Not an option unfortunately! Maybe with a windfall. What joy. A private doc or two, a cleaner and a chauffeur driven coach so that I can walk up and down on long journeys to relieve my painful posterior! Sorry, getting a bit carried away but you have to dream don't you?!
How close to Bristol are you? You can ask to be referred somewhere else under the NHS if you can manage to get there for the appointments. It doesn't occur to me to say that 50 or 60 miles is too far for a hospital since I used to live in Scotland and now in Italy some services are only in the central hospital well over 50 miles away.
Hi. Hope you enjoyed your egg! I cooked mine in the same spread that I use on bread so shouldn't have caused a problem. Think I might just have to avoid eggs for a while. If I run out of foods, at least I might lose some of the steroid fat, having had it pointed out by two consultants yesterday that I have put on far to much weight (did they think I didn't know)? I am already on a calorie controlled, low carb diet. One of them told me to take up excercise! So now I'm off for my morning jog lol. Have to keep smiling. Always a silver lining eh?!
Occasionally I wonder where these medics come from! MrsK was at an out patient clinic and mentioned knee pain and the young woman doctor told her if she lost weight she'd have less pain. MrsK was one of the really unlucky patients - she had GCA, needed very high doses of pred and within a few months had put on several stones (a stone is 14 pounds for non-UK viewers). Her rheumatologist knew why - but his minion didn't stop to think. MrsK asked her had she read the notes? Yes. Did she know what medication she was on? Yes. Did she not know the side effects of pred? Get out! And then the rheumy was told. He was most apologetic - and a chastened young medic was read the riot act.
When you can barely get down the stairs or from one room to another how on earth do they think exercise is an option? Since none of them will offer physio or hydrotherapy for "just" PMR. Grrrrrr!
Bristol is about 90 miles away. From what you have said about them, I would dearly love to be under their expert care but I can just picture my other half's face if I told him I had to have the car all day every time I had an appointment! We only have the one car these days and he is a self employed energy surveyor so needs the car to travel about. Exeter is only 15mls so we can generally work around his and my appointments. Poor Mrs k. Honestly, I would really like to give some of these so called professionals a piece of my mind (or perhaps foot)! My cardiologist was most taken aback when I used the term 'p waves'. Asked me 'was I in the medical profession'?
That sounds all too familiar to me - I am at the same hospital though in process of transferring my care to London.
You say it was your first appointment? Perhaps you saw a registrar rather than the consultant. In my case I saw the same registrar for my first four appointments - in most hospitals new patients are seen by a consultant on the second appointment at the latest.
If I were you I would make sure you are on the consultant's clinic list next time - ring to check when your appointment is sent through as it's too late to change it on the day.
Having said that, the registrars clearly learn their bedside manner from the consultants!
I'm sure Exeter rheumatology is very good when it's a clear cut case - but I must say that my consultation at Guys, though they could offer no definitive diagnosis either, was a much more pleasant experience.
And if you continue to be unhappy with their care do think about transferring to Bristol as Eileen suggested. After all we only get appointments once every four months. You could maybe hire a car or take the train?
Quick update. Just come back from docs. She has given me a prescription for Duloxetin (40mgs daily to be increased in two weeks). Apparently they do not start to take effect for at least a fortnight so I will wait two weeks before reducing the pred. (Rheumy 'forgot' to mention this)! Apparently they also work as an anti-depressant so maybe I will stop crying every two hours as well. That would be a bonus. Can still take the Tramadol which is a relief. She has recommended that I have a flu jab as I now have steroid induced type 2 diabetes as well. She said so far I have been lucky (?!) not to get any infections since being on the pred, as it is a lot more serious than usual. Has anyone had their's recently? I know some people are wary.
Most people I know have their flu jab every year and most of us don't get flu or any problems other than maybe a sore arm. Strangely, since being on pred, I've had FEWER infections and I know a few others who have found the same.
Good luck with the Duloxetine! Your mention there of your need for tramadol does add to my suspicion that the rheumy could be right - pred should control PMR pain pretty well and for most of us other painkillers did nothing for PMR pain. Still - he could have been nicer about it.
Hi Eileen. The Tramadol does not have any effect on the pmr pain at all. I take it for pain caused by congenital spinal stenosis which it does help. Sorry for the confusion. Sometimes forget that everyone does not know my medical details. Have trouble keeping up with them myself at times!