Trying to deal with mood swings with pmr

Marilyn I just typed a whole message and it flew off the page.  I can identify with you on all levels.  I was diagnosed with ME 14 years ago.  I was diagnosed with PMR November there.  I have two grown up sons, one still lives at home.

I have been a very strong independent person most of my life.  I managed ME the best I could and most times I forgot I had it but not in the early days.  Having to ask for help from my sons is killing me.  I cannot carry a bag of groceries from the shop to the car without my arm muscles pulling and aching.  There are days when I don't feel too good.  Your family are probably used to seeing a totally different person now.  I am the same.  I could walk 4 miles in just over 1 hour not all the time but I could have and now a year later I cannot walk the length of the street that my calf muscles hurt.  I am not used with this.  Stick around this website and you will get through it.  You cannot make your family understand and there is light at the end of the tunnel, I have to believe it.  Acceptance is half the battle.  Good luck      Pat

I think four is a bit low after 1 year....I have had it for 18 months and have not been able to get below five and even then have to up it after a week or can't get out of bed. I give myself a boost about every two months....40, 30, 20, 15, then down to ten. any lower and symptoms return. I did stopthe Preds about 6 months ago thinking it was them that caused all my problems but it was actually the Omneprazol. I have no problems with the preds now and I think one has to have patience and a bit of imagination with PMR. No need to suffer when Preds work so well... wait until two years are up before you worry too much about the meds that help. My doc goes crazy when I manage my own medication and tried to punish me by withholding the Preds.. I phoned a solicitor.... no more problems!

It's my life , whats left of it, and my body which I have looked after well despite chronic Auto Immune stuff that started as soon as I first took Omneprazol... I never made the connection because the heartburn relief was so good. I had no idea that it stopped absorbsion of essential vitamins and minerals... especially Vit B12...no wondermy energy levels went down to nil.

I know this bloody nightmare of PMR will go...I am determined to get through it. Dont be afraid of the Preds...one day you will not need them. I already had developing cataracts but noone told me of the possibilty of acceleration on preds...only the osteoporosis... but hey the Omneprazol is far worse for that so hopefully now I have stopped I wont get it... Having fallen badly so many times in the past five years I have not had any evidence of weak skeletal system! I am 71 by the way and still working and travelling all over for that. The worst time was last November when  travelled to Sweden and had to use a wheelchairwith assistance from the car park to the plane and back... It can be done !

On Saturday I am off to Ireland for work and will be parking in the long stay and getting the bus....I could not have done that in the past 6 months so please don't give up hope...Also there are some great corsets you can get to give your midrift some support when the pain gets you there. I also use those gellice packs that go in picnic sets for any pain areas...much betterthan heat. Wrap them up in a soft cloth or you will freeze your skin.

Believe me it's not in your  head.  Sometimes the fatigue is so great i feel as if I can't move from room to room. I am trying so hard to lower my dose of Pred but boy when you feel so crappy you just want to increase. but then tomorrow comes and you feel better. and the beat goes on. I have had PMR for 51/2 years and keep waiting for it to disappear as quickly as it came.Wish they had a patron Saint for PMR i would be on my knees 24/7. the only thing we do is keep the faith and carry on. Good luck 

Teri

HI Marilyn,

Sorry to hear you are having such a tough go of it.  I have been on pred for over 2 years and after trying a decrease from 4 to 3.5 have suffered a flare that has be back at 10mg.  Like everyone else that is in this position I hate taking prednisone.  I was borderline for meds for glaucoma and have had to go on them but other than the wonderful weight gain I haven't had any real problems.  The only time I do is when my dose is too low.  I agree that maybe you should increase your dose a little to see if you get better.  I think at our age (I'm 65) quality of life is the most important thing and a little more pred isn't going to be the end of us.

I will say that I need my rest in the afternoon then I am pretty good to go till bed.  Some days, especially when the weather is a constant drizzle and grey, I get a little down but I find a good book that will make me laugh and I'm OK. 

Hope you are feeling better soon and don't forget you are not alone.  This is a very big club

Hugs,  Diana

I have read all the posts here - and I would say that what you describe in your first post and your responses to the others says very clearly that you are at far too low a dose of pred for the state of your illness. The fatigue isn't greatly changed by the pred - but the pain should be. The fatigue is then up to you to manage. Your body is intolerant of exercise and you MUST rest in order to husband what resources you have. 

Reducing the pred is aiming to find the lowest dose that manages your symptoms acceptably - it is not an aim to get as low as possible whatever. I have had PMR for 10 years - for 5 years it was not diagnosed and i managed better with no pred than you sound to be doing on pred. There is no point at all taking pred unless you take enough to feel reasonably well. It won't make you the person you were pre-PMR but it should make you feel failry well. If you can't do the cleaning - then so be it. I can't clean - I can do a bit but not very much. I live with some dust - it is very patient, it will always wait! If it is unacceptable then my husband has to pay a cleaner or help. You shop at a supermarket where you can take a trolley to the car - you don't carry anything more than a cup of tea. 

There are people who were off pred in less than two years - it is estimated about a quarter of people get off pred in that time but they are at a much higher risk of a relapse. About half take up to 4 to 6 years to get off pred and the other quarter are, like me, on pred for along time, sometimes for life. I'm finally down to 4mg but it has been a rosky road.

However - I feel well, my memory is back to normal, I can walk for a couple of hours at my pace - short distances I can walk faster, longer distances I have to pace myself. But that is the key: PACING. You cannot carry on as you did before. You don't expect to do that if you have flu or if you have had an operation. You have to recover. And you have to be patient. It's tough, I won't deny that. But you will have a far happier life if you learn to accept that, for the moment at least, you are subject to limitations and learn to adapt instead of fighting it tooth and nail. Fighting just wastes energy that can be far better used elsewhere.

It is difficult for everyone, you are not alone in that. Follow this link and you will find sites with a lot of info and a lot of others in the same boat as you:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

The northeast support site has a DVD for members called "You are not alone" which explains PMR and how it affects us for patients and families alike. 

But above all - you need to find a dose that gives you more relief. Methotrexate may work - but the majority of people find it doesn't make much difference in the end. They get to a lower dose of pred yes - but then they have a flare or the side effects make them feel poorly. The original evidence was failry equivocal: one study said it helped, one said it didn't, one didn't know. The most recent opinions are it doesn't make a lot of difference. 

It WILL get better - but at a year it is a bit soon to be honest. I'm sorry to sound so hard - but doctors are all too keen on telling patients "you'll be over this in a year or two". The reality is that the patient who is off pred in a year or so is the exception, not the rule.

I don't have PMR but i have GCA and frankly this is depressing. I'm 53 and I have a 10 year old and it's extremely hard because I'm exhausted. Plus I have developed a neuropathy from this which requires I take gabapentin, which makes me really sleepy. thank god she goes to school which allows me to space my drugs out and nap. It's hard because the person I was just disappeared one day and was replaced by another person i hardly know. Thank goodness for low doses of Fluoxetine (Prozac). I definitely recommend that people suffering from mood issues from Prednisone and other steroids check out low doses of SSRIs. hope you feel better soon.