Asking on behalf of husband

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.

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

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

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.

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.

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

 

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.

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

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!

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!!