help please - newly diagnosed
Posted , 7 users are following.
i have only just been diagnosed and have luckily found this very useful forum. I have lots of questions and hopefully some of you can help me. after months of excruciating pain - which I thought was my arthritis flare up - I finally found I have polymyalgia rheumatic. I have been so bad I have been crying with the pain.. shoulders, neck and hip mainly..worse in the mornings.. my Gp told me to go do some research and let him know if I want the pred. I'm still debating that... it is scary when I look at the side effects and the amount of people trying to get off it etc. I have uncontrolled diabetes and am insulin resistant, the nurses have tried everything and are now out of options. I also have diverticular disease and high blood pressure. my first instinct is to ask for the steroids as I cant live like this any more with this pain, but will I get worse in other departments... diabetes or diverticular problems etc
I know I may not even get any side effects but I usually do from most things and there are a lot of medicines I'm allergic to. my gp has given me an anti inflam drug for now but I just don't know what to do about the steroids... I'm going to a weight loss clinic right now with a view to gastric band to help my other problems... I'm guessing it will be a waste of time on steroids as I will probably gain weight.. I'm confused.. depressed and don't know where to go from here... I just want the pain gone.. please can anyone advise me? thanks for any input
0 likes, 9 replies
EileenH leigh77
Posted
When you look at "patients trying to get off it" in the context of PMR it is because you start at a higher dose than you will need long term and then you reduce the dose slowly and carefully to find that dose, the lowest dose that gives the same result as the starting dose did. . Many doctors don't explain that side of things, patients think they are reducing to zero and of course can't always do so - and that is when they complain about trying to "get off pred".
If you want reliable and unbiased info go to this post
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
which gives links to all sorts of useful sites.
If you cut carbs drastically you may not gain weight - I lost 35lbs by doing that. Weight gain is not inevitable with pred. That should also help your diabetes - a very low carb diet is now recommended by the American Diabetes Association as a way to manage diabetes. But I gained weight with PMR because of being unable to exercise, I simply couldn't move enough and I had PMR for 5 years before I was diagnosed. I have no side effects - and I have been on pred for 8 years as I am one of the 5% who have PMR long term. 75% of patients are able to get off pred in 2 to 6 years - some take longer. Maybe if your PMR only lasts 2 years then you could put up with it but when it goes on and on it really is no fun at all.
The side effects of antiinflammatory drugs are actually probably as bad as pred when used longterm, a recent study has shown apart from cataracts other side effects ar eno worse in patients on a PMR-level dose of steroids than the status of people of the same age not taking pred. If you look through the resources post you will find a link to this study on a site called practicalpainmanagement and called Polymyalgia Rheumatica and Steroid Side Effects: New Findings.
As far as I know, your diverticular disease should improve with pred but I am not a doctor.
If you want the pain gone, then pred is the only answer in PMR. Unless you are in the USA where some doctors are offering the RA biologic Actemra/tocilizumab which has recently been approved for GCA to PMR patients. If you are in the UK it is not as easy as it hasn't been approved for PMR and is only available for GCA on a case by case basis I think.
I assume you are already under a consultant for the gastric band surgery. Maybe you need to discuss it with them too.
TheRaven leigh77
Posted
In a nutshell, if you have PMR and want the pain gone, you need to go on Prednisone. Most people are started out at 15 or 20 mg and then very, very slowly reduce over time. Prednisone controls the pain - doesn't cure the PMR. You will have side effects from Prednisone but it varies with each person as you'll read about on this forum. Mine are relatively minor - difficulty sleeping, thin skin, bruise/bleed easily and my A1C numbers elevated up to the pre-diabetic level. As I've reduced on Prednisone, so have the A1C readings and I'm hoping to get closer to normal over time. You have a lot of issues and I wish you luck.
I think it comes down to quality of life. Until you get rid of the pain it sounds like the quality of life sucks pretty badly. On this forum people alternately cuss Prednisone for the side effects they have to live with and praise it as a wonder drug for how quickly it eliminates the pain. If you have PMR you should have a dramatic reduction in pain within 3 days. For me it took 12 hours after I started on Prednisone before I had a 75% reduction in pain.
leigh77
Posted
thank you both for your advice.. I will be contacting the doctors Monday morning and asking for the pred..when it comes down to it its the pain that needs to be managed first.. other things can come later.. what an awful condition this is and id never heard of it before the diagnosis, that's bad in itself as there must be little awareness in general... unless I live in a bubble lol...thank you again
Anhaga leigh77
Posted
You're right, there is little awareness. And I've learned, whenever I happen to mention to someone that I've got PMR, to hastily add that it's completely different from fibromyalgia, which people have heard of. In a way it's the same (pain) but management of the disease (pred) is different and comes with another set of issues. (No, I don't go into all those boring details with the hapless person I'm conversing with
) Family, friends and co-workers have trouble understanding that just because you're on medication to control symptoms doesn't mean you're back to your normal energetic self. I think we have trouble grasping that ourselves!
linda17563 Anhaga
Posted
Glad I`m not the only one that has a family that doesn't understand PMR .....I have lowered to 9.5, from 10, VERY slowly and I`m flooded with pain....yesterday after pain steadily increasing over the last 3 weeks and realising it wouldn`t settle I said to my husband I can`t take this pain anymore, to which he replied.....the hospital aren`t sure what`s wrong with you (after 6 years!) so why don`t you ride it out, till you are off pred, and then go on pain killers!.....he`s lucky I`m low on energy!
....
?I understand it`s difficult to explain how you feel and my husband worries about the long term damage of pred......but so is inflammation if not controlled......and most people think we look ok......
?My sister understands because she has RA.......and like you, I don`t grasp it myself......
Anhaga linda17563
Posted
My hubby is kind, but he really doesn't get it. I observed recently when I started doing exercises for a rotator cuff injury that he started to do the vaccuuming, nearly my least favourite chore. He didn't help much when I was untreated with undiagnosed PMR. He didn't pay attention when for several months I complained of a sore shoulder. But when I was overtly doing something to help myself get better suddenly he noticed. It's like learning a language. It goes both ways. I'm sure I've missed signs of need or sickness in some close to me.
mark9992 leigh77
Posted
You've had good replies on the issue of using pred, so I'll leave that alone. However, as someone that was pre-diabetic before PMR I can tell you that the worst (not the only) side effect I've had from pred is the giant leap my blood sugar has taken. I started taking pred in the AM and found that it completely eliminated my ability to process sugar. I could exercise as much as I wanted, but my muscles could take in no significant amount of the sugar. My numbers skyrocketed.
Ultimately I started taking pred at 8 in the evening. My pred levels go up considerably at night, but in the daytime I'm able to control it with diet and exercise.
I also refer you to my new discussion on diet as an adjunct to PMR. its early days, but seems to be helping me greatly.
Mark
leigh77
Posted
thanks to everyone... every little bit of info and personal experiences of this horrible condition is helpful and I know it will be going forward too...I have started pred today and hope to be pain free soon... the only problem is that I stopped the anti inflammatory drugs I was using before I got the pred and am in a lot of pain again... I wasn't sure if I could continue with the anti inflamatories as the doctor didn't say anything about them. I just hope the pred kicks in soon ... does anyone have any idea on taking something for the pain until the pred starts to work?
Anhaga leigh77
Posted
Just making my way back through old posts, which have been piling up for weeks. How are you now? I reckon when you made that last post you had been on pred for a few days? It also sounds like the other painkillers had been helping you. As you know, this may indicate you haven't got PMR, or at least not just PMR. PMR should respond within a very few days to pred, and it would only have been slightly relieved, or not at all, by any other anti inflammatories. Depending on the other drug there is a problem with gastric effects, which can be quite severe, if you take it with pred but your doctor should have given you some guidance.