Predisolone

Hi John, at least you have an understanding doctor which is a real plus. I find my energy levels are much lower than before PMR when I was always rushing around doing things. People cannot understand when I now say I can't do things as I did. Also carrying on working is hard. I was able to work from home which helped. I have now given in to the symptoms and have accepted that my life has changed.

Working is tough.  I had a small printing business for many years and when the economy went down we scaled back.  I took a job and kept my business on the side.  Last year I went to work in the homeless mission field and that's when the PMR hit.   I've cut most of my side jobs and the ones that i do have stretch me out pretty good.  I've always been active at home, business and church but seems like now i just collapse when i sit down and struggle for energy just to go to bed.  I've always been prideful about not being lazy that's the thing 'bout this that bothers me most.  Folks don't see a physical illness although when it (PMR) first hit I could not hardly walk and my wife was having to help me get dressed.  It's amazing how fast  Pred. works but it is also amazing how much it will beat one down when trying to taper off of it.

God Bless

John I so agree about pred! My rheumy thought you just took pred and everything would be back to normal, if he only knew.

The pred is only to manage the inflammation that is caused by your immune system having gone haywire and attacking your body by mistake - damaging tissues, inflaming them and causing pain and stiffness. Autoimmune disorders also cause fatigue - fatigue way beyond tiredness because you can't go to bed and sleep and it is gone, it is there all the time. The pred doesn't touch the real disease - it just manages symptoms.

The real illness is still active in the background despite the improvement in the pain and stiffness and the only way to manage the fatigue is pacing and resting appropriately. It isn't laziness. PMR is in many respects similar to rheumatoid arthritis except there isn't the joint damage associated with that when it isn't treated. And RA has a far wider choice of medications to manage it, some of them with fewer side effects long term than are the risk with pred. However, they don't usually work in PMR.

You are lucky - you have a sensible doctor. That is a start.

Try to not be too hard on yourself. One of the most difficult and frustrating parts of PMR is not being able to do so much but I have also learnt that not everything has to be completed in one go and it became less frustrating when I learnt that lesson. I have only had one flare which was near the beginning and it was because I had been given too fast a reduction. I started steroids towards the end of May and I am doing the slow taper towards 9.5... nearly there. I am retired which makes a big difference to how much control I have over my day. I think if someone is working they probably need a higher dose and will likely be exhausted. I find prioritising and pacing is the answer. Little bites will eventually eat the whole apple! I realise it will be more difficult with a work situation. I hope you are successful with your taper but don't be in too much of a rush.

John, What you have written here describes me exactly. I'll be 62 in a couple of months & also prided myself on my high energy, high, hard work ethics. I have mornings that I'm so weak you could tell me the house was burning down & I wouldn't get out of bed to get out. So, so hard to accept those zero energy, high fatigue days. I'm on 20mg. prednisone but many PMR symptoms are back. Six-months ago when I was diagnosed the initial 15mg was like a miracle cure within days of of starting. That lasted a couple months then I was reduced & I guess too quickly for me & it's been up & down (more downs), ever since. As you said so hard because many people in our lives don't have a clue of the physical & emotional battles we face daily with PMR & for many of us, other co-existing diseases. This PMR line is a fantastic thing & I'm so glad I found it, thanks to all that share on it.

Thanks Eileen, You explained our situation trying to deal with PMR so well here.

Hi Reggie, did your blood tests show high inflammation when you were first diagnosed?  My doctor won't let me reduce until he has carried out another blood test to make sure the inflammation is being controlled.  As Eileen has said, the build up can be like a slow drip and you hit a down when a blood test might have showed it was too soon to reduce.

Sounds like we have been going through the same thing.  I just upped the Pred. 1mg to 11mg.  10 was not cutting it.  Pains started returning, hips and hotspots in my arms.  The energy thing really has me down, I get home and just sit on couch and some nights dont even make it to the bed.  Like you the initial dose of Pred. was like a miracle, was able to do a lot around the house and do a few jobs on the side but that didnt last long.  I've had to tell a few of the long standing customers that i had that I couldn't do their work.  I started our at the chiropractor thinking i had a back ache, then ended up in the emergencey room and the Dr. told me it was neuropathy from diabetes and gave me Gabapiton and something else.  Neither of them did anything and I went to my primary Dr. and was sent for xrays, but she gave me 40mg of Pred. for a week...it was like Cinderella, when the Pred was gone a few days later i had to go to the emergency room, couldn't use my arms and could hardly walk.  My wife and I begged the attending for Pred,...I cried real tears for it.  At the ER i got a cortisone shot and was given another script. for 20mg for 2 weeks.

They also refered me to a Rhemetologist which my primary Dr. did not do but scheduled me for injections for artheritis in my back and neck and when she found out i was going to a Rheme. she cancelled them.  My biggest issue it Preds. and diabetes, they have played havoc with my blood sugar. but at this point it is the lesser of 2 evils.  I think the main thing is being patient and taking small steps.  I too am glad to have come across this forum.  God Bless.  

The hardest thing now that my PMR is under control is making sure I don't overdo things.  Some friends wanted me to go to an event some evening, and I said I couldn't, that I had my art class that day, and they couldn't understand that I really would not be able to do anything else that day!  That is hard because I've felt so isolated it is lovely when people want me to do things with them.  

I understand what you mean. I was looking at my diary for next week and it's looking a bit daunting. I try to pace myself but am also supporting friends who are going through difficult times. This week is quite manageable but next week just filled up by itself. I may have to rearrange some days! I sometimes tell friends that it is not one of my better days and request a change of plan. My friends understand, thankfully.

I have become a total nerd nowadays on planning my days. If I do one major thing each day that is it. I don't think my friends really understand, but they are very supportive. They keep bringing me soup and flowers!

My husband actually did some vacuuming one day in recent memory, totally voluntarily.  

My husband doesn't know how to put ours together! But if we are having family visitors (who have to put up with a bit of dust, I get a cleaner in for others) he does clean his bathroom (we have two as our 3-room flat was designed to be usable as a holiday home so he uses the "family" one - luxury    ).