Asking on behalf of husband

Bones, joints and muscles
1

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? 

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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

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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.

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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

 

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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. 

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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?

 

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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.,

 

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Eileen- these details and the link are wonderful. I am encouraged by the information about diet and weight. At least there is that much control and having that choice is heartening. 

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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.

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Hello

Although PMR is most prevelant in women over 65 years, men do contract this disease, but I've heard that they do not usually suffer for as long as women do. Providing the steroid is kept at the right dose level to control the pain, you should be able to lead a normal life. I have learnt the hard way, that reducing the dose too rapidly causes the symptoms to return. Everybody is different and there is no right or wrong dose to take. Also, having had this condition for 3 years now, I am presently undergoing a very trying period having overtaxed my muscles in my upper legs (which are weakened  by steroids). and therefore cannot stand or walk for longer than 5 minutes at a time. This has been going on for 6 weeks now. My Doc has put me on 20mg Pred. Very disappointed as I had reduced to 10mg. BEWARE THEREFORE OF OVERDOING IT -  PACE YOURSELF. I did not know aout this beforehand - no one told me. Taking the pred does not help the muscles to repair however - only time.

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Two of us with similar problems found Bowen therapy worked for us. If it will help you will know after 3 sessions - not an open-ended committment. Really worth considering.

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hi jae   i have    been on steroids    4.5  years  never had any of the side effects.

what so ever.   just pace yourself. dont over do stuff. and reduce  steroids  very slowly. there is method   of slow reduction on this site. dont worry  it will be ok in the end.  try not to worry

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for got to add  that  bowen therapy  helps a lot with any pain you  may get.  i just had

my second session   this week and all pain in my back has gone.  previously i had it for knee pain  12 months  ago   the pain went  with in  afew days  and never returned. can not  praise this  treatment  enough

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I think it is important to accept that having PMR is life changing, not necessarily for the bad on the other hand. I gave up gluten and simple carbs when I started the steroids as I heard it stopped the moon face. I mentioned this to my GP recently and she said you do not have a moon face at all, so it worked. Of course the moon face may not have happened anyway. I have become a total nerd about nutrition and have learnt all sorts of things about vitamins, minerals etc etc. I must bore my friends silly. I keep a spread sheet of my steroid dose daily and also use a colour code of how I feel, red, orange, green. As I said I am a total nerd. I accept that going out in the evening makes me tired so try to avoid it. I give myself little treats, massage, pedicures ... I also swim a couple of times a week and when I win the premium bonds have a glass of champagne afterwards with a friend to celebrate. I have carried on working but get others to carry the heavy cases for me.

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Isn't this a great site? I have a few doctors, and listen to them, but get equally good or better info here. I am currently on a gluten-free, sugar-free, vegan diet but can't say it's helped the PMR. It is helping me lose weight very slowly - about 3 lbs/month. I had weight to lose anyway (about 30 lbs), Prednisone interferes with that. According to one doctor, belly fat causes inflammation, and a lot of folks on the site have said they were a bit overweight. But, then, there are others who were in great shape, exercising, etc. I did get the moon face, but never actually gained weight, even before I cleaned up my diet three months ago.

I can respond to how to help, because I have the most wonderful boyfriend in the world. There are many days when all I can do all day is sit in a recliner watching Dr. Phil reruns. He has never once complained that we never do anything, that he's bored. He just says he's so glad I'm resting and we're together. And, I believe him - that's who he is. Also, there are times that I am testy and ill-tempered. When I apologize, he blames the prednisone, remarking that it's so out of character for me! For the most part, it is, and lack of sleep, chronic pain and prednisone don't contribute to anyone's charm! Mostly, he lets me know that he's with me, better or worse, that he's not going anywhere, and that he'll do anything to help me - from the smallest gesture to major sacrifice. He says he wishes he could take the pain for me, and I expect you wish you could do that for your husband. He can't, you can't, but I can tell from your post that you are a caring, proactive partner, and that he is a lucky man, despite the PMR. Best wishes.

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The ladies here have and are doing a wonderful job of giving advice and encourgment.  From my personel male point of view the worst thing was the shock from being a very active 74 year old some 2.5 years ago.  I found myself unable to get out of bed in the mornings and trying to get around was painful.  I was finaly after 3 weeks prescribed 30mg pred and within 4/5 hour was 90% better and moving very much more.  I'm now at 1 mg but can't seem to get any lower or stop without symptoms returning.  I also found I had the reduce my diet to match calories in equalled calories out.  I also do a lot of walking and this has helped greatly as pred will waste muscles so getting them back into shape is an ongoing thing.  I didn't experience any real side effects, no moon face or weight gain.  Depression was not a problem.  I have learnt to not let stress run my life, after being widowed twice with all the stress that entailed I have learnt to accept and cope with what life throws at us.  don't know where you are located but I am presently in Cyprus and find the better/warmer weather helps and doing miles of walking in a cleaner atmosphere has improved my outlook on life and my body

 

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Wow. That's a heap of caring and understanding.

In a lot of respects I think my pmr is harder for my wife, who isn't afflicted, than for me.

I felt the steroid side effects, mostly on mood, had more effect on us than the pain and fatigue. A stable anchor is invaluable. A non-judgemental ear when I simply don't feel like doing anything.

Pacing is important. Which means that things now seem to get done in my time rather than our time. Everything takes longer.

A bit of weight gain from being less active. Eating less is a good start. It disappeared, ever so slowly.

Its now 2 1/2 years on pred. I thought I could see the end but had to increase pred a bit recently and now on 5mg/day. Stable, which is nice.

In the early days lots was new and uncertain and almost constantly changing. New symptoms or side effects to worry about until I got used to them. I recall 4 to 6 months to get used to what was happening to me and to feel stable.

Also in the early stages, where going for a walk was a struggle, having someone with me meant I didn't have to worry so much about how to get home again. Which meant I was more inclined to set out.

Initially it was too easy to imagine the worst. There's a trap in forums and books which can lead to fearing the worst. What in normal times would have been a simple headache suddenly becomes a major event requiring scan - its quite reassuring to know there's nothing. A blue tinge to legs that turns out to be dye from shorts is a major concern. A swollen leg that turns out to be mild shingles felt like a medical emergency. It was hard to remain objective, but over time we (not just I) have got better at knowing when something needs attention or is just a minor hiccough.

But most of all, its all the little things that help manage it.

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Hi jae I was diagnosed with PMR in Jan 2015, I started off pain in neck, flu like symptoms, and then developed thigh pain and was referred to A n E, I met with rheumatologist, I started off on 20mg and after 2 weeks they had me reducing, when I got down to 12.5 mg, I started to get jaw pain and then headache and noticed arteries at side of temples very prominent,

I never heard of this disease before,

So thanks to this forum and all the good people on they told me to get myself to A n E I was admitted for 4 days had a positive biopsy, my dose was increased to 60mg

I left hospital with no pain CRPand ESR had come down a lot ,

But next day bad headaches and sight went in right eye very frightening,but it came back, I had 3 episodes of this, but I was very lucky, my dose was increased to 80mg and I was fine, except all side effects,

But on a positive note I'm down to 5.5mg have some thigh pain but I'm grand I walk I don't really have much fatigue,

I did get moon face but didn't put on weight, I did stay away from carb, sugar not all the time,

I've been taken root ginger 2oz I liquidise it on orange, I take garlic, turmeric, like there anti inflammatory foods, I just feel there making me feel better, but who knows,

I try and eat more fish,

Really don't want to frighten you but just watch the headaches, take care

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1.  I lost weight before diagnosis and have not regained it.

2.Understanding that things he used to do easily may be difficult now, and stay difficult for a while.  He may, perhaps even subconsciously, be grieving for his "lost" life - make allowances.

3.We are all different but 2-3 years is a reasonable thought when starting the journey, after a year it becomes easier to look at the long picture, should that be necessary.  Many men recover more easily and quickly than women for some reason.

4. I had increased ocular pressure and risk of glaucoma, and increased blood sugar and risk of diabetes at the beginning.  I couldn't do anything about the former except have it monitored, but I watched my diet extremely carefully to keep the blood sugar from spiking more.  These and other rather subtle side effects were pretty well all gone by the time my dose was down to 5 mg.

5. My husband is somewhat oblivious but my younger son has spent quality time with me, working hard to create a nice garden, etc.  Just the companionship helps as PMR is unexpectedly isolating.

6.  Watch the diet carefully, expecially avoid refined carbs and sugar.  Every evening I like to have a mug of ginger tea made from a tsp of freshly grated gingerroot steeped in boiling water.  Most of us will have our own little comfort foods.

5. I ordered a PMR recipe book from Amazon early on, probably when I got Kate Gilbert's book on PMR and GCA.  I kept Kate's book, of course, but I returned the book of recipes as I felt most of the ideas weren't even as healthy as what I had already been eating for many years!

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Catch this in the bud and put him on a low carb, low sugar diet with plenty of fruit and veg, fish, chicken and lean meat.  It is not inevitable to put weight on the face and the body. I was very strict with diet as soon as I was diagnosed as I did a lot of research as to how to avoid steroid bloat.  After a year, so far I have been lucky as I dropped 9lbs in the beginning and have kept it off by being careful. And no bloat.   So try this and keep optimistic.  My husband eats the same diet as me and he has lost weight too which has done him good!!