Asking on behalf of husband
Posted , 17 users are following.
My husband has been newly diagnosed and I feel very anxious about what we may face. I would appreciate any feedback on my questions below. I do my best to remain supportive, calm, and positive with him. But I need support from people in the know.
I purchased 3 books focused on Polymyalgia Rheumatica, 2 of
which focus on diet.. They were helpful but the info about the risk of GCA and diabetes alarmed me.
This is is his brief story : after diagnosis he was put on prednisone and experienced some intense side effects so he is now on a different steroid, the steroids brought immediate relief but also some depression and sleeplessness.
So now he has a sleeping med, a beta blocker ( for heart related side effects, pounding heart, etc) and the new steroid. No anti-depressant yet.
Jere are my questions as we would,greatly appreciate any input and personal experiences:
1. Has anyone here avoided weight gain? We have been told that moon face is inevitable. We were also,told that weight gain is not inevitable if a strict diet is followed. So far, no weight gain, Adoet is being followed-low,carbohydrate, added calcium, etc
2. I am wondering how to help support him?. I confess the almost constant negativity and depression has made me feel gloomier too and I feel,guilty about thst because he is going through much worse. I would not cope nearly as well as he has. He is not self pitying, I believe the depression is steroid related.
3. Is 2-3 years typical for steroid use?
4. Have most here experienced GCA or diabetes - or both
5. What has your spouse some thst has been mosf helpful and supportive? spouse
5. Which specific diet and food restrictions are best?
0 likes, 74 replies
dea13 jae61606
Posted
Hi Jae, Sorry to hear about your husband, PMR is a whole new life changing experience; I am glad you are here and found this site, you have wonderful information here from people who know, like EileenH ....
I have had it since April this year, and I have learnt that education on PMR and GCA is the only way to go. Everyone reacts different to meds of course, but so many other things we have the same.
I myself have put on a lot of weight since April and Preds, they do increase your appitite, more so when on a higher dose I think, I was on 40mg ... I'm tapering now down the Preds, and have lost 3kgs in 3 weeks, so there is some proof for me. As I said we are all different.
Wish you well :
cindy828 jae61606
Posted
I've only had PMR for a few months and I'm currently on 20 mg of prednisone. I'm very careful about what I eat. No sweets, no bread, no alcohol. I really try to stick to soups, salads, eggs, yougurt, fruit, vegetables, fish, chicken - and a little meat once in awhile. I also try to walk 3 miles every day, which really helps my energy level and my mood. I've gained 2 pounds and I'm working hard to lose it. When I was on 15 mg of prednisone, I had no energy and pain, but at 20 mg I fly around the house and never sit still. It could be that your husband temporarily needs more predinsone. When I told my doctor that I still had pain on 15 mg, she did a CRP and Ced Rate and my levels were still high. My rheumy hasn't discussed when I'll start reducing and I'm ok with that during the holidays I need all the energy I can get. The drawback is that now it's hard to sleep at night, so I've started taking medication to sleep, and it seems to be working all right. I'm 68 and have always been healthy, and I'm willing to work hard to be well again.... but that may be the 20 mg of prednisone talking. Best of luck on your PMR journey.
jae61606 cindy828
Posted
I am trying to adjust our diet while also meeting the dietary requirements of our son ( special needs) who tends to be thin and needs a fair amount of healthy carbs ( not junk food). He likes chili, spaghetti, lots of potatoes, beef stew, some fish, etc. .
Then I will need to meet my husbands dietary needs.
It it was difficult going grocery shopping the other day but I am sure I can get the hang of this. It is just a sharp learning curve. His doctor said to restrict carbs but he insists on eating some bread and the occasional potato and I have no choice about that.
We did stock up on fish, some chicken, eggs, yogurt, lower carb fruits, vegetables, etc. The carbs in hummus seem to be reasonable if only a small bit is used as a vegetable dip.
I make soups frequently and always tended to throw in kidney beans. I wonder if the carbs in them would matter much if the majority of the soup is full of low carb veggies?
ptolemy jae61606
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EileenH jae61606
Posted
Don't panic about diet - it is the processed carbs that are most important to avoid and it is also a weight-gain thing. If the weight goes on on the lowered level of carbs he does accept - time for a rethink. But low carb isn't essential - although it does help the weight problems and the blood sugar problem to some extent. But everyone is different.
You can't live in France (or Italy) without some bread! I have the problem of pizza and pasta too...
ptolemy EileenH
Posted
EileenH ptolemy
Posted
ptolemy EileenH
Posted
EileenH ptolemy
Posted
ptolemy EileenH
Posted
pam1793 jae61606
Posted
Hello. I'm sorry you had to join our site, but never the less, for those of us who are here I think will agree that it is a wealth of information.
I was was diagnosed with pmr in 2013, but after being on Prednisone for four months, I was considered "cured." I never thought about it returning.
in March of this year, unfortunately I was then diagnosed with GCA, a whole different animal as far as I'm concerned. While I know both can be active at the same time. The GCA has brought me much greater pain in my head.
Ive taken as high a dose as 60 mg of Prednisone several times after trying to taper. I'm currently at 18 mg. That's because the doctor jumped me from 60 to 40 before begining the slower taper, so it went a bit quicker.
I've gained 10-15 pounds and have a horrible moon face (in my eyes). I barely recognize myself in pictures. I try to eat healthy, have gone virtually gluten-green, no bread, don't eat cakes, pies, cookies, etc., but exercising is out of the question because it triggers ravaging migraines. I used to be very active before my pmr diagnoses.
My best advice is to just have your husband take it a day at a time and NOT over do, even on good days. I try and forget about it, but the GCA, along with my migraines and fibromyalgia just part of life now. Depression and anxiety are managed with add'l. meds, all part of living with chronic pain.
There re is no goal for me as to when I'll be off the Prednisone; I just want to make it down to 10 mg or below by mid-summer, if possible.
These are supposed to be the retired golden years. I'm still waiting.
Best of luck to you and your husband.
jae61606
Posted
But 6 - 7 hours of sleep is more than 3 so it is a trade- off.
On on weekends he is to avoid sleep aids and simply sleep as
needed. He does take his steroids as early as possible and that helps.,
cindy828 jae61606
Posted
My husband is a doctor and bought Diphenhydramine over the counter for me. It works pretty well and it's not addictive. Benadryl is another name for it.
susan29426 cindy828
Posted
Diphenhydramine works for some. For me, I wake up after 2-3 hours absolutely wired. I've heard of others having that reaction, too. Also, with regular use, it was recently linked to Alzheimers. Don't mean to keep you awake, but please check into that if you find yourself using it regularly.
EileenH jae61606
Posted
In the UK it is very unusual to be given anything to help with sleep problems - the longer term risks are mostly not worth it.
The secret seems to be to run with it and rest as much as you can and not get uptight about it.
To everyone though - just because you feel like the Duracell bunny on 20mg pred DOES NOT MEAN YOU ARE NOW HEALTHY!! If you rush around and do too much you will find the pain returning - just as you will at many stages ahead of you.
The pred is ONLY managing the symptoms and the actual disease process is still going on in the background, probably unabated at first, attacking your muscles and causing damage and making your muscles intolerant of acute exercise. Don't be misled. If you want to be able to manage on less pred then you have also to do your part and make some lifestyle changes and learn to pace and rest appropriately. There is a link to pacing information at the bottom of the links post
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
EileenH cindy828
Posted
If you become dependent on using it to be able to sleep and many people do - that is also addiction.
cindy828 susan29426
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Thanks Susan, I'll check on that. Hopefully, this will be short term use, until I start tapering.
Anhaga jae61606
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If he is taking calcium, and probably he should be, it's possible that taking a dose with a small snack near bedtime will help with sleep. As a lifelong intermittent insomniac I can tell you I can't stay awake now even when I want to!
jae61606 Anhaga
Posted
jae61606 EileenH
Posted
Sheilamac_Fife jae61606
Posted
Hello Jae
Most people get better and come off the steroids. We are taking them to deal with the inflammation, so removing most if not all of the pain, enabling us to have a decent quality of life whilst waiting for the PMR to burn itself out. It is not a cure, we taper to try to find the lowest dose possible that keeps the pain at bay. Lots of people have flare ups as they try to taper but they are frequently because they have tried to reduce too quickly often in steps of more than 10%.
it is a condition which can resolve and appear cured but can come back again months or years later. However, I just take it a day at a time and do my best to enjoy my life. It's a different life than I had and different to what I expected but there are many worse things that could have afflicted me. Yes, it was very scary at first and it took time to adjust and accept but I kept telling myself, 'this is annoying and disruptive but it is not fatal!' It will go one day. Good luck to you and your husband. Keep asking the questions on this site, it is a wonderful support.
EileenH jae61606
Posted
Because for at least 75% of patients with PMR the autoimmune cause of the symptoms eventually burns out and goes into remission - and then there are no symptoms to need the pred to manage. Most of them then remain free of problems although a small percentage do have a relapse at some point. I know a few people who have had it twice - and most of them are free of it again and back to normal life. One lady in her 80s is back to using a strimmer in her garden.
Does it make it less scary if I tell you that if you think back to your parents and grandparents generations you will almost certainly have known someone with PMR? My grandfather almost certainly had it as did a great aunt. But they - and their doctors and friends and families - all referred to it as their rheumatics and it was accepted as an almost inevitable part of aging. Some people were lucky and never developed it. But even when you did, there was no option: you put up with the pain and did a bit less. Pred hadn't been invented very long in the 1950s - and there were probably patients with PMR who were amongst the patients in wheelchairs who were given massive doses of the new drug - and got up and walked. It wasn't until some time later that they realised how risky it was using such large doses for long periods and doctors developed their fear of steroids. But for PMR a low to moderate dose, used sensibly and reduced carefully will manage PMR without any more lasting damage than would probably happen with age and increasing infirmity anyway.