Well I thought I asked this days ago. Either I got interrupted or decided sleep was first. Lol
So here goes. Has anyone successfully treated PMR with anything besides prednisone?? It messes up my blood sugar which prevents me from doing my job.
I tried methotrexate which was pointless. So I’m searching for solutions.
Thanks for you Help
Hello, oh for a penny/dime every time someone asks that question here. It appears that there isn’t really. Sugars wise, the Pred causes spikes in blood sugar and can lead to insulin resistance. Diabetic or not, carbs have to be severely curbed. I don’t have diabetes but my sugar levels have always been very reactive and there is type 2 diabetes in my family. So, like many here I cut out pasta, bread, rice, corn and just ate veg, moderate fruit (but plenty of berries) and protein. Wine twice a week and dark choc are my treats. I don’t worry about fats. My HbA1c has been great and I’ve not had mad sugar swings, plus no weight gain. Now in 5.5mg I eat a bit more, but still put on weight very easily. So after a check with your doc, I think you’d be doing yourself a lot of favours by doing this and you’ll keep on the road for longer.
I have been struggling with my diet more at lower Pred too. I’m at 5.5 mgs at this point. I can’t tell if my cortisol levels being lower than they were when I was at higher levels of Pred is causing some craving that I didn’t have before. I lost 25 pounds over 5 months after starting Pred in Dec 2016. I was pretty strict on carbs and sugars, but had no cravings.
Maybe I’m just losing will power after a year and a half. But it is curious.
I have been experiencing something similar, and wondering whether it’s physiological or psychological.
A bit of both I think. From about 15 to 7 my appetite was better controlled, but from 7 it’s come back with a liking for salt. Nothing extreme but I’ve found myself needing (?) a bit more carb, but I’m still off potato, pasta and rice etc. However, my exercise level is up since my muscles have gone from gum to something more useful. Even so, ive put on a couple of pounds and salt goes to my face in no time at all, same as before. I’ve also noticed my gut not as happy with my high veg,fruit and protein diet any more. So, not sure quite what it needs. It’s all changing sands this game.
Snazzy - i putt putt along low carb wise but am not hypervigilabt as I know I would plateau with it and burn out if I was too strict. I had a week off and was glad to return to it a bit. I am not always good if i feel I am suffering deprivation 😂
Cravings for salt are a sign of poor adrenal function.
Bit of both I think Jane..
Me too Hindags, was on 3mg for 17 months and had to increase to 5 at Easter and the hunger went out of control. In 10% terms it was too much of an increase and I'm putting it down to that, I can't reduce back even by 1mg per week so second effort at .5 and is more manageable in terms of withdrawals and hunger pangs are settling down. Just putting it down to the change, nobody accepts change easily and that's what my body is shouting at me for - but determined not let it beat me. So I don't know think for one minute you're losing will power it just keeps asking for more and it's hard - don't let it grind you down, it will pass...
If you find the "silver bullet," please share.... I also am sick of side effects and withdrawal symptoms of Prednisolone!
Right now I’m using essential oils. Which help. But they’re not as affective. But I’ve stopped using them and definitely notice a difference.
Hmmmmmm.
Actemra has been used in addition to Pred to treat the disease. Pred just treats the inflammation. I’m wondering if the addition of Actemra would allow lower Pred, so fewer blood sugar problems. It seems to help people taper a lot faster.
Actemra has been approved for use with GCA, not PMR yet, but some physicians have been using it in complicated cases to treat PMR. Some members of this forum from the US have been treated with Actemra. Search for Actemra. It has been discussed here from time to time.
Also, have you tried cutting carbs and sugars out of your diet?. Pred really screws up carb metabolism. That may be why it messes with our blood sugar.
Just a few thoughts. Experts will no doubt be coming along in a while.
Oh carbs don’t help that’s for sure. I’m already diabetic. So prednisone doesn’t help that. I see the rheumatologist next month to try to deal with this.
Was reading about that. I’ll ask the Dr. Not sure how I can make that work when I’m never in one place any predictable time that often. But if he thinks it’s worth a try I’ll figure something out. Not cheap either.
Sorry CrazyTrucker, there really is nothing apart from Pred. In your job, the resting, the pacing and the low carb, low sugar diet must be almost impossible and yet that is how the really disciplined on here are managing the sugar spikes and other rotten symptoms. Is there anything you can change with your job that will support you right now? Sort of bringing the mountain to Mohammed?
We go through periods of hating Pred. Then have a flare and remember what it is actually doing for us.
pmr-gca-northeast.org.uk/as... then go to Page 4.
Hi CrazyTrucker it is really pred or pred! DMARDs such as Methotrexate have helped some people reduce faster but not all also there are new drugs around such as Actemra, but at the end of the day pred is actually our friend. Diet is important with PMR and that is true for non diabetics as well as with people with diabetes.
Has anyone tried CBD ( Hemp ) Oil?
It’s says it good for pain, anxiety, inflammation. I might be reaching too far but curious🤔
Some people have tried CBD and some say it helps. The CBD we can get in UK does not contain Tetrahydrocannabinol (THC) which is illegal in UK. Although can be obtained medically in the States and parts of Europe I believe.
Right, I know it’s legal in some states here in US but the CBD is legal in all 50 states. I’ll have to investigate into it more. I nice drink in the evening helps a lot😊 but I’m concerned with taking too many pills. ( prednisone, Advil, vitamins) and enjoying a drink will be effecting my liver. Too much.....my brain gets tired
I must admit I try to keep off supplements and include items in my diet apart from vit D and calcium which I take. Perhaps I should start taking cannabis resin illegally! I have blood tests every so often and if my liver test is OK I go home and celebrate with a drink, that seems to work really well, nearly as good as pred!
One of the things I don't understand is anyone taking lots of supplements that are supposed to help the immune system. If it's overactive to start with why would it help to try and make it stronger?? I can understand diets that are supposed to be anti inflammatory (even if I am suspicious of them when it costs a fortune in books and dieticians) but paying to take things that may make your illness worse, by making immune system even more powerful seems pointless. Hey ho. Maybe my pred brain won't let me see the rationale.
Your pred brain IS seeing the rationale - you are quite correct IMHO.
vitamin D and calcium is what I take plus a multi vitamin. Like I said, I worry about Advil or having a drink. I try to eat a balanced diet. I need to work on carbs though 😬
Watch the Advil and pred...won't help your stomach taking both unless you are on ppi. Even then I wouldn't take daily.
That’s why I asked about hemp oil CBD oil, thought that might help. Maybe not have to take Advil or sometimes something to help me sleep.
I think some people have found it helps sleep. Several members have been prescribed amitryptiline to aid sleep. If you do a search on CBD you will find those discussions you might find them useful.
The only drug that reliably reduces the dose of pred required is Actemra - but whether it works on its own is another matter. Other than that - corticosteroids are the mainstay of management of PMR and GCA. Not managing PMR properly DOES increase the risk of you progressing to GCA - and then you will have no choice, steroids are the only 100% reliable way of preventing loss of vision. Actemra is then used alongside it to reduce the pred dose more quickly but even it may not get you off pred altogether.
As has already been said - cutting carbs drastically does help manage blood sugar levels. It was the only way of managing diabetes before insulin was made and is now recognised as a methods of managing diabetes by the American Diabetes Association.
In what way did methotrexate not work for you?
I just started it 2 weeks ago with no side effects as of yet.
Afraid not CrazyTrucker - you've seen all the replies, can't add to those except to say acceptance plays a big part - it's too big a monster to fight and is so hard when you're working - perhaps you should change your name to EasyTrucker instead, mind over matter and all that - just leaves to say good luck!
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