Thank you Mrs.O for all your helpful advice in dealing with PMR. I have found out so much more since finding this group. I was diagnosed with PMR about June this year and still wonder if the change in my BP medication a few months earlier might have triggered PMR. However, I am thankful that the crippling pain and swelling cleared after the first few days on 15mg Pred. The sudden ability to do tasks I had been struggling with was an enormous boost tho I now see perhaps I should have taken things slowly. I had even given up driving as the pain in my hands made it almost impossible to open the car door or turn the ignition key.
I am now on 10mg. A blood test a few weeks ago did show a small increase in inflammation but as I had a cold at the time and no flare up of the pain I stuck to the 10mg. I would like to try reducing again and the idea of alternating say 10mg with 9mg sounds a good start. I will see what my doctor says when I see him on 22nd.
Hi Diana - I have been on Amlodipine for 10 years for Hypertension, and when I started Preds and the other meds around it, I had concerns about 'mixing' drugs. I have had no problems since starting steriods which was also in June, I'm down to 10 mg but I'm staying there for a couple of months due to some recent stress. I also did a slow reduction from 12 to 11 (over two weeks) and 11 to 10 (over three weeks) both 28 days at the full dose between. Stick to the slow method it works and don't be to keen to reduced too fast - it's not worth it!
Welcome here, Diana, where you will get loads of helpful advice from the 'old timers'!
Oregonjohn's advice to take things slowly is among the most important lessons to learn when reducing Pred. Reducing too far and too soon is the most common reason for flares.
It might be wise to not even consider any further reduction in your dose until after the busy Christmas period - stress can also be a common factor behind flares.
Diana,
Very interesting to hear your comment re Amlopodine. I went to the doc for a routine check and he recommended I go on a blood pressure med..Amlopodine. Within a week I began my battle with PMR which I have mentioned here a few times.I too immediately connected the blood preesure med with PMR onset.It was rejected out of hand by the surgery but my doubts persisted.Your post has rekindled my interest in possible connections.
I would be interested in hearing from any other patient with similar experience.Does Eileen have theory??
Subsequently I had a Pacemaker fitted and am now back on Amlopodine and Indapamide in combination.Recently deveoped a hernia in left groin.No takers on that I suppose LOL
I'm sure you WOULD like to try reducing again - but beware. It really often is a case of more haste, less speed.
Follow this link and you will get a post with more links in it. The first is to the NE support group site which will provide lots of info if you haven't already seen it. In that first post the final link is to a paper about management of PMR - they keep patients at 10mg for a year before reducing further. By doing so the achieve a flare rate of 1 in 5 instead of 3 in 5 using faster reductions.
In posts 4 and 5 of that thread is my very slow reduction scheme which a lot of people have used successfully - consider using that if you decide to reduce immediately - but do wait until after Christmas!
Panamabob
I succumbed to GCA within a week or two of starting the Ace Inhibitor, Ramipril, for high BP. However I had just recovered from almost a year of undiagnosed, therefore, untreated PMR. The GP stopped the Ramipril believing I might be having an allergic reaction. When later at a rheumy appointment I queried the possibility of Ramipril stirring up GCA, my rheumy commented that we'd never know but he certainly thought I shouldn't take Ramipril again. That was some 7/8 years ago, and just recently a renal consultant pleaded with me to give Ramipril one more try. I did, and within days started experiencing fleeting odd feelings around my temple area, plus nausea - both among the symptoms I experienced on Ramipril the first time around. I stopped them immediately!
One other thing in your post that has really got me interested is the fact that you have been taking Amlodipine and have subsequently had a pacemaker fitted. My hubby collapsed in the early hours about a year ago, and was rushed to hospital with total heart block, necessitating the insertion of a pacemaker. He has never had heart problems in the past. I researched his BP meds (Amlodipine and Ramipril) and found a possible side effect of Amlodipine could be heart block! He, too, has a hernia! Food for thought.
According to the West Midlands Centre for Adverse Drug Reactions calcium channel blockers can cause joint pain, they mention muscle pain separately. Amlodipine is a calcium channel blocker but the data sheets don't include that as a side effect - but I gather there are plenty of other unpleasant side effects!
I don't know - I have to say I am very sceptical about drugs that cause muscle and joint pain being used in patients who already have PMR but it is a very common side effect so probably quite difficult to avoid. There are a lot of possible triggers for PMR, almost certainly more than one is required so a particular drug may well be the final straw.
I am also very much of the opinion that if something starts within a short time of starting a new drug then until there is evidence it ISN'T that you should not discount the possibility. It doesn't matter if it isn't listed - the listed side effects are normally the ones that came up during clinical trials, if a majority of practices take the attitude yours did when patients complain about it then it will never be added to the list. It is after a drug is being used for the general population that it shows its true colours.
Hi Bob - I come from the other end - having been on Amlodipine 5 mg for over 10 years without any problems, I have recently been diagnosed with PMR which required long term Steroids to 'control' it not 'cure' it. I had concerns about mixing drugs but over the past 6 months I have experienced non of the side effects mentioned in this thread https://patient.info/forums/discuss/severe-side-affects-from-amlodipine-besylate-33457 or during the previous 10 years. It's back to - we are all different and have different reactions to different drugs.
MrsO,
Thanks for that.All I can say is that I am convinves Amlopodine and maybe Ramipril in combination contributed to my Sisk Sinus Syndrome and PMR.Of course I can't prove it,but when people post on here with their similar experiences,then maybe some researcher may take it up.
Hernia? Well,who is to say but all these seemingly unrelated issues are indeed presenting this forum,at least with multiple thiungs to debate and consider,
My SSS is almost certainly due to the autoimmune component of PMR - it certainly isn't due to any prescription medication for BP or anything else. PMR can have been hovering in the background for a very long time before it manifests itself at a level that drives us to the doctor and the autoimmune bit may have been there far longer than that.
Thank you Eileen. I will try and be patient though not something I am good at but I guess I am likely to pay the price if I don't take things slowly. My experience has made me very wary of any drugs because of the side effects they bring with them. I will definitely wait until after Christmas anyway before looking at a reduction.
Thank you for your advice John. I will keep you company and stick at 10mg for a bit longer. Good luck with the reduction.
I'm glad I am not the only one to be linking amlopodine with the onset of PMR symptons. Maybe one day someone will find out why a small percentage of people react to the drug in this way.
I'm no different, believe me. But without the medication I am on I would probably be very ill and possibly dead!
However, the pred bit is a balance. With the first type of pred I was on l had few side-effects other than the weight I had already gained with untreated PMR making me far less mobile decided to redistribute itself to around my middle. The pred I was switched to when I moved here to Italy, Medrol, was truly awful in terms of side-effects and didn't even have the consolation of making me pain-free. I was switched again and all those side-effects have disappeared: beard gone, skin and hair back to normal and 17kg of weight gone - some of that was the pre-pred weight gain.
PMR itself has side-effects: immobility can lead to weight gain and osteoporosis, the pain and immobility stop normal life and make you a possible victim of depression, your "friends" often get bored and evaporate and the long term inflammation puts you at increased risk of cardiovascular disease and some cancers.
Pred will allow a reasonable QOL and reduce some of those risks. Being a bit cuddly is far preferable to day after day of unremitting pain - truly, I have been there for 5 years pre-pred. I don't deny there are downsides - but noone gets all the 82 listed side effects of pred, some get almost none, or none that are much different to the PMR side-effects.
What a gem you are Eileen. There is so much truth in what you say. It is good you found a really well tolerated pred. I think my weight gain is partly down to comfort eating - feeling unwell has made me just a little depressed and as you say the immobility caused both by pain and tiredness all add up. No chocolates this Christmas ! All the best
As someone said recently: it isn't what you eat from Christmas to New Year that makes you fat - it is what you eat from New Year to Christmas"!
I found cutting carbs has made a massive difference to my appetite, have lost 17kg and still drink wine and eat small amounts of really high quality chocolate, nothing less than Lindt, preferably over 70% (and Milka, but a square at a time!). No processed carbs about 97% of the time, I do occasionally eat bread (rye, spelt and kamut but never wheat as i have an allergy) and polenta. If I want a dessert when we go out for a meal I have one - but it has to be worth it. Pred changes the way your body processes carbohydrate, remove it as far as possible and it should help the appetite problem, reduce your weight and help avoid both diabetes and high cholesterol, both also pred side effects.