I was recently diagnosis owed with polymyalgia rheumatic and have been prescribed prednizone. I am interested in knowing how others with this disease are doing.
I got into this chat room several weeks ago and have found a wealth of information. Firstly there are a lot of side effects. Mine include lack of taste, smell, very low energy and stamina and occasionally blurred and double vision.
I have found that unless your doctor has a specific test do not reduce the dosage dramatically. Whereever you are on the dosage, gradually reduce the dosage by 1/2 to 1mg over weeks. I was at 20 and my doctor reduced me to 5 over a one month period. The pains came back to an intollerable level and, from what I have found, this negates any progress in healing. I am going back to 20 and gradually going to reduce it on the Bristol PMR Plan.
Most important is you are not alone out there and don't hesitate to ask new questions as symptoms or conditions change.
Good Luck,
Tony
Hello janice.I have just returned from a few days in York & just loged on,Welcom aboard. I would try to put a bit more info on your post ie your dose of pred, what effect it has had,I have been been on this journey for just over12months just getting over a Verry bad COLD [flue] Dont be afraid to post for any info that you need.they are a super bunch of folk.Stay Positive & all the best for your journey.Dave.
welcome to the forum. the PMR and GCA folks have wealth of knowledge and experience on this forum. I'm a GCA newbie myself, diagnosed just this december, so I can say they've been quite nice. hope you find the community and the information you need here.
How are you feeling now? At first I still didn't feel that great, though my doctors thought I should. I kept having to go back to bed, thoug at night I couldn't sleep because of the pain and stiffness. However, gradually I started to feel better, and have been able to reduce my dosage gradually, from 15 at one time (last winter) to 2mg now. Each time I lower the dosage by 1mg, I have about a week of increased pain, but once I get through it, I feel better from the decreased dosage. Now I feel pretty normal, though, sometimes I have some shoulder pain, and if I really push it, I become fatigued.
I managed to reduce down to 1 last August but after a week the symptoms returned I was really shocked at the reaction of people when I went shopping.. Using the trolly to get around I could hardly stand up. People kept asking if I were OK. I was determined to stay off the Pred because the side effects were so bad. By November I could not move. Spent all day in bed or in a chair. Doctor did not want to give me Prednisolone again but in the end I had to threaten action. After starting again ( doc said I could have 6 a day which were nowhere near enough) I needed to travel to Ireland. I took 40 Pred. Then next day 30. Reducing daily by ten. After that went down by one a day. I managed to fly to Ireland as a normal upright walking person. I worked for two days and flew back. Then reduced the Pred right down and stopped. I had run out and they refused any more. Back to staying in bed again. Another trip to Sweden this time I was in a wheelchair but visiting relatives. By Christmas I had a supply of my six a day once more. Tried ten a day to start but did not work. Took 30 and reduced daily by five until I got to 15 then dropped weekly by one. I am now on 12 and half and reasonably comfortable but was better on 15. I am going back to Docs to try and sort this. They should not withhold vital medication..... I know I freelance a bit and that annoys them but hey my method works. Not only that the side effects have subsided. The buffalo hump has gone and the sweating is only now when I vacuume the house or make the beds. The awful palpitations and heart anything was not from Prednisolone but was a side effect of Omneprazole. I do have excruciating headaches and tinnitus though but doc takes no notice of that.
Hello Janice, sorry to hear of your recent diagnosis but welcome to the site.
i was diagnosed with PMR December 2013 although I had experienced symptoms since the September of that year. It began with a pain in my neck and then over three months spread to my shoulders, tops of my arms, hips, groin, behind my knees, thumbs, left wrist, and finally across mychest and sternum.The pain was so bad that I couldn't sleep and my husband had to help me do everything. So in 3 months I'd gone from a jogging, tennis playing, Zumba exerciser 2 mike a day walker , dancer to an invalid and I really thought I was dying.
then I visited my rheumatologist and after an in depth examination he told me he thought I had PMR and to take these tablets and if after 3 days I felt there was no improvement to stop taking them and book another appointment.
The following morning at 7.30 I stood in the kitchen with these tablets and thought to myself well, here goes! Within 4 hours I was almost back to my normal self. I remember sitting in a chair watching tv and my husband was in the kitchen to my left. He said something and I turned my head round to the left to answer him. That was the first time in nearly 3 months that I had turned my head. A little while later my husband asked me if I'd seen something or other and I said yes it's upstairs, I'll get it. I skipped up stairs and returned downstairs again with the item. My husband said, do you know what you have just done, and i said no. He said you've just skipped up stairs!! I stood for a second then just cried and Ii was at that point that I knew all was going to be well.
I then looked up this condition and prednisolone online and cried again. I did not want to have a chronic condition and I most certainly did not want to take this horrid drug so I looked up all natural remedies but they all came back negative and so I still take the prednisolone.
i personally count myself as very very lucky. I am only 53 and up till now had always been very healthy. Infact I hadn't been to the dr in over 5 years. I have no real side effects from the prednisolone or the omeprazole but saying that I dread to think what damage it's doing to me internally. But I live for now and so I don't really think of what damage it could do, all I think of is how it's given me back my life.
my rheumatologist and gp are fantastic and I have pretty much been kept to the Bristol PMR plan and no matter how brilliant my blood results my GP always says, yes the bloods are fine but how do you feel. And if I have a cold sore, of which I always have many, or a cold or anything she always tells me to hang on abit before reducing. I have had 2 flare ups which looking back could have actually been steriod withdrawal so that put my dosage back ip to 10mgs but I am now down to 9 mgs and intend to reduce by 1/2 mgs and stay on each dose for a good 6 weeks.
no matter what your Drs says it's very important yo reduce little and stay on that dose for a good 4-6 weeks do that the dose of preds can really do its work. Look up the Bristol PMR plan and stick to tea as much as you can then when you get down to 19 mgs follow Eileen's very, very slow reduction plan. I do not suffer from fatigue but I do sometimes suffer from depression but it only lasts a day or so and I'm then back to my normal self. When I say normal, I'm not quite back to hoIwas. I do plenty of walking and light dance exercise but jogging and playing tennis how I used to are still a long way off. It is important to remember that this condition is not terminal but it is very frustrating and no matter what all the websites say will take on average 3-4 years before we even see the finishing line so it's important that we pace ourselves.
i hope you have experienced an improvement since taking the preds. All the best, christina
Sorry I meant to say when you get down to 10mgs follow Eileen's very, very slow reduction plan, not 19mgs, sorry!
I think you need a new doctor Christine - with PMR symptoms and headaches and tinnitus GCA must be ruled out since they are both possible symptoms.
The yoyoing your dose has probably contributed to your problems as well. If the GP won't do things properly tell him you want a referral to a rheumy. If he won't refer - find another GP asap.
My story is very similar to Christina's except I had had PMR for over 5 years before I got any pred - and still didn't have a diagnosis. It took 6 hours for me to be able to walk down and then up stairs. I've been on pred since and after a rather hairy time 3 years ago when I had a major flare due to the sort of steroid I had been switched to not working for me except to give me side effects I am now down to 4mg and really well.
As you see, everyone is different.
Cant change doctors here... they are the nearest and other docs will not take new patients out of their area. I was diagnosed with GCA which is why I was put on a high dose originally. I have had short term high dose steroid treatment in the past for pneumonia type problems and had no problems, I have to be able to work from time to time so have no choice but to up the doses in order to deal with the stress. Like people do if they have an illness or opperation. I am 71 and the treatment given out by the doctors in this area is appaling for older people... they really treat you like imbeciles who should go away and die. If I make too much fuss they may well remove me from the list and then I will not be able to find another doctor.
Hmmm - if you had GCA originally and have been forced to reduce too quickly then the GCA remains an unsolved problem. And you should be under a rheumy, not a GP who seems to have forgotten his oath. Where are you?
I amin a very rural part of Oxfordshire and yes I think you are right...when I did some research on this I know that the reduction originally was way too quick and too much at once. They would not listen to me and the doc said my blood did not show the 'correct' inflamation info to see any specialist. I had a reumatologist examination at the Nuffield a year or so before and they could not find a specific cause... again bloods were not postive. It was obvious I had sever inflamation but as I had also had Graves Disease thre years prior which did not show at allin the blood...I had a thyroid storm and was diagnosed by radio therapy. Thyrotoxicosis... I try to explain this to the docs but they think autoimmune conditions are 'fake' It is really frustrating and scary. Last October I had pain in one of my toes. Doc said it was my heart and gave me some medication... It was so WRONG for me and I ended up with terribly swollen legs, She admitted giving me the wrong stuff and thought it funny. Although the swelling subsided when I stopped this I still had 2 months in agony because of this. I hate GP's ! Since stopping Omneprazol I have had no 'heart' symptoms whatsoever and my blood pressure has gone from high to normal all the time! I am sure if I told them that they would not give me an appointment... they should never have left me on Omneprazol for ten years without any tests or checks....or any suppliment advice.
I have come to the conclusion, that reading some of these dreadful stories of us patients with PMR...there are very few doctors/rheumys that know how to treat us, with correct lowering of dosage of pred...Do what this forum recommends, VERY slow lowering, and you won`t relapse, like many of us have, because of not knowing, and relying on ignorant doctors......(not my doctor, but rhemy was!) If only I`d found this forum sooner. We are all different, but the very same in lowering correctly! Many people on here, Mrs O, and especially Irene are very Knowledgeable.....good luck...Linda
They can't just chuck you out, though I admit they can make life unpleasant and a doctor did once tell ME to get out of his practice. I went with the greatest of pleasure and it was a "Good move".
I would report any GP I met finding adverse reactions to a drug funny - amlodipine was it? Pain in a toe = Heart???? And no, omeprazole is recommended for use for a few weeks at a time, not long term. The FDA is quite clear about that. Gastroenterologists are less keen on it but GPs dish PPIs out like sweeties.
Your GP (or whoever went on about "correct"
needs some education: approximately 1 in 5 patients with both PMR and GCA never mount an acute phase reactant and the biopsy is clear in about half of patients.
You are a typical autoimmune patient - get one, get more. Bit unfair but there it is. Is a private rheumy consultation an option?
Hi everyone, I was watching doc Martin on tv on Saturday and one of the smaller story lines was about a waiter showing symptoms of PMR. Doc Martin suggested the waiter go immediately to see his own gp. I laughed and laughed. Here is a fictional character who knew all about PMR yet many of us have real drs who know sod all about it!! Regards, christina
Ilove Doc Martin... wish we had one like him... however that storyline was a bit misleading... I know I can spot a PMR victim a mile off by the stance etc... but no way would one be able to be a waiter with it... I am a chef and found it very difficult to hide symptoms in the beginning and impossible now... employers just get rid of you within the first few hours of work... even supermarkets encourage me to go home and see a doc because I look as if I may be an insurance risk if I carry on shopping. There are a lot of people diagnosed with this and it should be more exposed so people can understand... It is a true disabilaty... if temporary, hopefully and people need help!
What we really need is House to have it as a topic. And, even more, find a cure!!
It used to be in Scotland that all GPs took the People's Friend and the Sunday Post so they could read what complaint was in the doctor's page - because on Monday their surgery would be full of people with it. They don't even read their medical journals these days.
no private consultation possible now. Ten years back my husband and I were still woring and had private medical insurance so original AutoImmune diags were with them. These NHS docs resent that.... We lost our jobs because my husband was diagnosed with PP Multiple Sclerosis and has been progressing downhill ever since. I amhis primary carer and he is very poorly now, mostly wheelchair bound. We get no help at all apart from his attendance allowance which only stretches to some physio for him and a private consutant twice a year who liases with our NHS docs for his medications. It can be very hard sometimes...if I cannot get out of bed my husband has to really struggle. He tries to help but really makes more work than anything else. If he falls it sometimes takes me 3 hours to get him up on a chair again... mainly because he gets the giggles and then so do I... we both cant breath for laughing sometimes but I think that is really underlying fear and frustration. It's our system's way of dealing with this horror.
Thank you for the information above... I will go armed with it because I get this nonsense every time I ask for referal or help. I amwondering if after stopping the Omniprazol the blood test may now revealmore ? I have been on them for 10 years and I have had such a positive recovery in some areas I just wondered?
"These NHS docs" should not be resenting anything - because a lot of them are earning from doing private work.
And I know a few paramedics who would happily come to help you get your husband back up. They feel that is more their raison d'etre than drunks throwing up having spent their pay on a Friday night.
I don't know the omeprazole will make much difference to the bloods. But if you do NEED any "stomach protection" a packet of Zantac has far fewer side effects and does pretty much the same job for this scenario.
I've had some news this evening which relates to the NHS which makes me very sad - and even more despairing for the people who depend on it.