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
walter98524 jae61606
Posted
I HAVE BEEN ON PRED. FOR ALMOST 1 YR. NOW, AND IM DOWN TO 2MG
?AND CANT WAIT TILL IM DOWN TO (0) MG.I ALSO TAKE (ALEVE GEL CAPS
IF I NEED THEM ONLY ONE. AND YES I HAVE GAINED WEIGHT ABOUT 20 LBS.
I KNOW PEOPLE THAT HAVE BEEN ON PRED FOR LONG AS 3YRS, BUT LOW DOSES. IM NOT GOING BACK TO PRED I'LL TAKE ALEVE BEFORE I GO BACK. GOOD LUCK AND HANG I THERE IM 75 AND FEEL FINE NOW
jae61606 walter98524
Posted
Thank you so much, Walter. This gives me much hope.
My husband is 64 and this hit him like a freight train, went from a mild ache to excruciating pain in less than a day. He couldn't even put on his shirt without help.
I forgot got to note that his mother and aunt had scleroderma but we were told there was no connection to Polymyalgia . I am skeptical , however, because they are autoimmune diseases and also because we were once told that it was just " chance" that the sisters both had scleroderma. This was in the days when much less was known about the disease. Now they say there is a genetic connection.
I am am trying to figure out the best diet and the best mix of proteins, vegetables, carbs, etc. I hope we can work in some carbs but I read that they stress the pancreas. This is a steep learning curve but we can do it!
This board is wonderful.
EileenH jae61606
Posted
There is a load of mdooly written in many so-called authoritative diet books. Of course carbs stress the pancreas - that is what it exists to do: produce insulin to metabolise carbohydrates! That's like saying food stresses your gut!
You'll have read my other post and Nefret's post by now: the best diet is a healthy mix with no processed carbs. The less carbs the better probably in terms of weight gain but I don't eat root veg much and almost no fruit - tons of salad veg and above-ground veg. There truly is no point making yourself ill worrying about his diet. Nor him depriving himself for a non-proven theory.
Nefret and I have haunted the forums (all 3 of them in the UK) for over 7 years now. I think I can fairly say we have not yet met anyone who has cured themselves of PMR by diet. We've met some who have made themselves very miserable by trying, others who fought PMR and pred in every way they could think of - and made themselves and others miserable in doing so. If there is one secret to living with PMR it is accepting you have a new normal - instead of mourning the old life and fighting tooth and nail against the new, devote that energy to enjoying doing what you can do. Because you will be surprised at the wonderful things that will happen - I have friends I would never have met had I not developed PMR. It isn't all bad.
As Nefret says - life's too short! And you are a long time dead - don't make life even more miserable than PMR manages anyway! In a year you will look back at this week and see how far you have come. EVeryone does.
jae61606 EileenH
Posted
THank you, Eileen. My husband was nearly in tears today because a pharmacist told him he should resolve himself to battling this for life and then did not add anything comforting or hopeful to counterbalance that. It was just a matter of fact statement. I have since filed a complaint.
i can not imagine why any person would say something in that way,
something that could attack a person's hope.
I am a very positive person and I think that helps ( it certainly helps my spirits and strengthens my resolve) but it made my heart ache to see my husband's face .
I am determined, however to see this as just a bump in the journey, and I am even more grateful to know that this board exists.
Anhaga jae61606
Posted
I can't believe someone could be that unthinking! In fact most people do get better and the battle, if one chooses to call it that, just becomes part of the ordinary fabric of life. Eileen has been dealing with this disease for years and yet she is a model of positiveness and obviously making a tremendous contribution. My journey has so far been shorter, but Eileen is quite right when she says there is a difference between the beginning when you wonder how you can face it, and a year later when you realize how far you have come, that this chronic (but hopefully not permanent) condition has in some strange way enriched one's experience of being alive on this planet.
ptolemy jae61606
Posted
EileenH jae61606
Posted
The actual figures claimed by experts some years ago were that 25% of patients are able to get off pred within 2 years - although they are more likely to have a relapse at some later date. 50% take up to 4 to 6 years to get off pred. The rest of us take longer, may even be on pred for life. As Anhaga says - I have had PMR symptoms for over 12 years, I have been on pred for over 7 years, I have had a couple of interesting flares! But the flares are not usually predominantly PMR syptoms, they are what I call "add-ons": myofascial pain syndrome causes tight/spasmed muscles and attacking them separately ;ets me get back to a lower dose of pred.
However - I do not regard my life with PMR as a fight. It's a pain in the anatomy, it is there and it does stop me doing some things. Not a lot but I have given up skiing - not directly because of the PMR but because now I can't be bothered to get fit again after 2 winters I really WASN'T able to ski for other reasons. I'd have to spend a small fortune on new boots etc and an annual ski ticket just to get back where I was - and there are far too many tourists who are a danger to themselves and others and take the appeal away now. So we drive up into the mountains and walk and sit in the sun instead
But we travel, we enjoy life - it isn't a fight.
If you have to have a chronic autoimmune illness there are far worse to have than PMR. It's a bit uncomfortable yes - but it does no physical damage to joints in the way rheumatoid arthritis or some other forms of inflammatory arthritis do. The autoimmune part CAN cause other damage - mainly if the inflammation isn't well managed with pred. Choosing to not take pred isn't as simple as it might appear but I won't go into that here. But sensibly managed and no heroics in trying to reduce the pred dose too fast or too far and life can be perfectly acceptable.
Accepting pred is a big step - and a lot of us "oldies" don't panic about getting off pred any more. One friend got to zero pred - and within a few months the symptoms crept back. She had struggled a lot a couple of years before - but with hip bursitis rather than the PMR - and they had cancelled their safari holiday. The PMR crept back as they were about to try again! She went back to 10mg, had a wonderful holiday doing all sorts of things (at 69) and since has got back down to 7.5mg. But she says herself - she doesn't care as much now, she realises the difference pred can make and also knows you don't have to crumble. Ignore all the scare stories you hear.
And above all - for some reason men seem to do far better overall than women. Hormones? Bigger muscle mass? No-one knows. But if you look around this forum you will find several men who still cycle, run, go to the gym, play tennis and pickleball - even with PMR and on pred. Life isn't perfect - but there are a lot of people in their mid-60s in far worse shape than with luck and common sense, your husband will be in a few months time!
FlipDover_Aust EileenH
Posted
best. advice. ever.
"We've met some who have made themselves very miserable by trying, others who fought PMR and pred in every way they could think of - and made themselves and others miserable in doing so. If there is one secret to living with PMR it is accepting you have a new normal - instead of mourning the old life and fighting tooth and nail against the new, devote that energy to enjoying doing what you can do."
jae61606 EileenH
Posted
philoso4 jae61606
Posted
My personal answers:
1- I actually experienced weight loss on medrol.
2- I have no suggestion
3- Probably somewhat longer.
4- Neither.
5- Listen and understand that I've changed in some respects.
6- I've always eaten a well-balanced diet with little red meat.
jae61606 philoso4
Posted
philoso4- I appreciate your honesty. I will listen even more closely to my husband as I tend to over plan thingssuch as getting a routine, following a diet, etc. I also tend to be a take charge person, primarily because we have a special needs child who would gave fallen through the cracks without my advocacy.
It it became a habit, learning to advocate. I was actually rather meek before then.
My husband is no child and I would never treat him as one. However, He does tend to simply " go along and get along" and would never have "bothered" the doctors- in spite of horrible and sudden pain that did not go away.
It took a push from me to get him to call.
I am not usually that pushy but I was so alarmed when he could barely stand and needed help to get dressed. Until then he walked regularly and had actually lost some extra pounds that had crept up over the years.,
EileenH jae61606
Posted
1, Quite a few of us have avoided weight gain or have been able to lose weight. Some of us cut carbs drastically and it worked. On a different forum some ladies have done very well losing weight gained while on pred by using the Slimming World plan - one has lost 16lbs in the last 7 weeks. Another has lost even more but obviously over a longer period. I lost 36lbs on low carb.
2. PMR can also cause depressed mood - but if the pred makes it worse, get him to speak to the doctor. Medication can help. if he won't have that - is counselling an possibility? Coming to terms with chronic illness is not easy!
3, No. Is the quick answer! About a quarter of patients are off pred in up to 2 years but they tend to have a higher risk of relapse later. About half take up to 4 to 6 years. The rest of us take longer, some need a low dose of pred for life - though that is probably because of poor adrenal function rather than PMR itself. That said, men seem to experience PMR differently from women and often have an easier journey - no-one knows why, probably something to do with hormones. There are about 2.5 times as many women with PMR as men.
4. No - GCA is a rare disease. I suspect your books over-egged the pudding! About 1 in 6 people who show PMR symptoms go on at some point to develop GCA but that is as much because people can have PMR as the symptoms of their GCA. Most of us never even have raised blood sugars never mind develop diabetes. Some become pre-diabetic but that isn't the same. Pred messes up carbohydrate metabolism but it isn't true diabetes and once you reduce or stop pred it resolves. Keeping carbs to a minimum obviously helps. The GP should be doing an Hba1c test every few months - it monitors the average blood sugar level. You can have raised fasting blood sugar without you average level being raised - both I and my husband who doesn't take pred have that!
5. Not a lot - he's hopeless despite having been a healthcare professional! if i were going to say anything - appreciate that fatigue of autoimmune disorders isn't visible and makes you very bad-tempered! So does pred! And don't say - "oh you can manage a bit extra surely, you can rest tomorrow". It doesn't work like that! Make sure he is kind to himself!
6. There aren't any. Some people eat oily fish and use garlic and turmeric in cooking and say they feel it helps them. I restrict carbs - doesn't make much difference to the PMR, it does help the weight! If I eat carbs I don't lose or even gain weight. Sugar is a very pro-inflammatory substance - I rarely use it, I don't have a sweet tooth. Obviously there is some in certain things I eat or drink but it is minimal - I eat a dessert once every few months and almost never eat cakes and never sweeten drinks. I do eat chocolate but mostly dark, min 70% cocoa solids., mostly higher.
You will come across people who have been told by their doctors not to eat this that or the other - it rarely seems to make any difference, they struggle as much as anyone else - often more because of the restrictions of the diets. I've tried gluten-free (I was gluten-free when it first started as I have a wheat allergy), no alcohol, no nightshade vegetables, almost dairy-free - all any of that did was restrict my diet even further! No difference in the PMR. There is absolutely no evidence that any particular diet can make any difference to PMR - everyone is different though and maybe avoiding some things may help someone feel better, but it may not be the same as helps me.
It has been commented that you feel as if you have lost control - you CAN exert control over your diet as a compensation.
Have you seen the reading list? And the slow reduction approach - because that is as important as anything else. Rushing at a reduction will only lead to tears, either because it induces steroid withdrawal aymptoms which are so like PMR you think it is a flare or you develop a real flare because you reduced too fast or too far. Slowly does it.
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
jae61606 EileenH
Posted
Nefret jae61606
Posted
As far as diet is concerned you seem to be doing all that is necessary, good for you. I didn't get the moon face (it is not inevitable) but I did put on weight, which removed itself during the steroid reduction - all is not gloomy here. I wouldn't completely restrict any kind of food - life is too short and with PMR a little treat from time to time goes a long way.
I was diagnosed with T2 diabetes at the same time as PMR probably because my doctor was doing all the blood tests she could think of and that popped up. Diagnosed with GCA some years later on symptoms alone as I had been on steroids for too long for a biopsy. By that stage I had been diagnosed with other medical conditions so it was just another one to add to the collection. And I am still here.
Look on the bright side - you husband is a man, and men seem to have a much, much easier time than women do. Possibly something to do with hormones, but no one really knows at the moment. He is far more likely to have a smooth ride than I ever was, so 2-3 years is a possible for him
What has my husband done best to support me? He's laughed at me and laughed with me. A gloomy atmosphere isn't allowed here - when I discovered that I didn't want to do the things I loved doing, I did go to my doctor who took one look at me and prescribed anti-depressants. One of the best things I ever did. Even if depression is steroid related, it is still depression. Go with him to the doctor and tell him that you are also depressed!
There are far worse things to be diagnosed with than PMR. Once you are able to take control of the situation it will feel much better. And don't forget that while Pred is, generally speaking, a bad thing, it is the only thing that controls the inflammation we call PMR, therefore it is a good thing. The reduction journey is not - absolutely not - a relentless drive down to zero. There will be glitches and plateau points during the journey and they need to be treated with respect. Any other treatment and they come back to annoy.
Is that all OK?
jae61606 Nefret
Posted