I need encouragement...

Read all the posts on this topic (above).  Take particular notice of EileenH's posts.  Eileen has explained it all here.

(Terri is a newcomer herself so probably can't reply.

The reason you are on prednisolone is to manage the symptoms. PMR is not the disease, it is the name given to the symptoms of an underlying autoimmune disorder. An autoimmune disorder is caused by something making your immune system not work properly so it doesn't recognise your body as "self". As a result it starts to attacks various tissues in the body which causes inflammation and damge - it thinks they are "foreign", like viruses and bacteria. Taking prednisolone relieves the inflammation and so the pain and stiffness should be better. 

You will need prednisolone for quite a long time - some doctors will tell you a couple of years but often it is much longer. The pred isn't making any difference to the real illness, there is nothing that can or does, all you can do is manage the symptoms. As long as the autoimmune disorder is active, you will need prednisolone. It isn't a case of taking a course of pred, stopping and you are cured. Sometimes the PMR goes into remission - that means the autoimmune bit goes to sleep and doesn't attack the body - and what you are really doing at the moment by reducing is looking for the lowest dose of pred that manages your symptoms so you can take that until the autoimmune bit burns out.

Even when you are taking the pred your muscles are still unable to tolerate exercise - and that includes being used - like they normally do. You have to learn to pace what you do and rest inbetween - which obviously isn't going to fit well with having to work. What you are probably doing is that on a good day you do too much and then the next day you are very sore because you overdid it. 

GCA (giant cell arteritis), which is related to PMR and can affect arteries in your head and put your sight at risk so you need a much higher dose of pred, is covered by disability legislation. That means your employer would provide some help adjusting your work but I don't know whether PMR is the same. Your best bet is to go to your union rep and Occupational Health and discuss it with them. In the early stages it is certainly helpful to be able to not work or work less - is sick leave or part-time possible?

Most of us on the forums are now in our late 50s and 60/70s and many of us are already retired so working wasn't/isn't a problem. I worked for a long time after mine started but all I had to do was get out of bed and as far as my desk to sit at a computer - I was a freelance translator working from home. It was still pretty painful sometimes but for 5 years I didn't even have pred, the pred did help a lot. We often say we admire anyone who manages to carry on working with either PMR or GCA and taking pred. You will probably need a bit higher dose to manage to work - and at a guess the rheumy has no idea at all what working a 8 hour day doing a physical job involves. What do you do for a living? I know people with GCA who have heavy jobs who did continue working - but although it is a serious illness and you need more pred, it doesn't always cause the physical disability that PMR can. 

I hope this helps you get your head around this - and do ask any specific questions you may have. If you follow this link:

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

you will find links to lots of things that help explain PMR. The first link to the PMR-GCA NE site has lots of stuff including articles by patients. I don't know where you live - but maybe there is a support group within reach. There are helplines too.

PS - I should also have mentioned - one of the symptoms of PMR is what is called "depressive mood" so it may be a combination of that as well as the [ain and stress you are feeling. Do discuss it with your GP.

Eileen thank you I do work in retail as a stocker I am a 59-year-old female and I have worked since I was 16 so it's kind of hard for me to just sit and not being able to do the things that I did it's even hard to get out of bed some days but it just makes me feel useless and worthless I guess I just don't understand everything that my body is going through right now so I'm really trying to wrap my head around things I will talk to the RA again on Wednesday the 15th god I just don't understand but I am going to read up on this and see what all is to be expected thank you for your quick response

Karen

We have all had to get used to not being able to do what we used to do - and I know it is hard. You WILL be able to do more once you get the pain and stiffness under control - and you will eventually manage to do far more. But building up your strength and endurance will take time and you will only be able to do it slowly - and if there is one thing that doesn't work in PMR it is rushing things! If you have been working for 43 years - it's time for a bit of a rest and there is no call to feel worthless at all. 

The government and their ideas that everyone should work to 70 will have a few shocks at some point - there are illnesses that can't be got round! There is nothing you could have done to avoid this - but stress certainly doesn't help, before or after getting it.

Eileen, I am again, so grateful for the information you supply here.  The response to Karen fits me to a T.  And Karen, your feelings/depression/ worthlessness is the way I felt, too.  My active life of my 73 yrs suddenly came to a screeching halt!  I keep trying to get back to walking for exercise, and pay for 2 days after, so now, I am going to try 10 minutes on treadmill a few times a day. Again Eileen, thank you for the explanation above. I am going to save/print it. From USA, Where our winter is just beginning!

Doing things in little bites does help - but be careful with the treadmill. You will be walking at a contant speed unlike when you are out walking. Is there any way to vary the speed a bit? I don't know, I detest treadmills! I feel so unsafe on them. Can you not walk for 5 mins out of the house a few times a day - 2 or 3 minutes out and then back? Where in the USA are you? Proper winter is it?

I had to buy a treadmill last winter because the weather was abnormally atrocious, even for here.  It was back-ordered and not due to be delivered until March 19th.  I laughed and said I wouldn't need it by then.  Ha!  Turned out I got a good month out of it before it was safe to walk at speed for any distance in my neighbourhood because of lingering ice.  We were all traumatized by last winter and we are hoping it was a one off and not the new normal.  I've only used the "dreadmill" once since the sidewalks were safe again, but it is there as insurance for days that are too cold, wet or icy to be outside for long.  Eileen is right, though.  If you can get outdoors for even ten minutes that alone is beneficial, never mind the walk itself.  

I don't know if this may help but I was diagnosed late May although realise I have had PMR for quite a while prior to this. I have been feeling so good recently on 10mgs, getting out more etc. and thought I should be lowering to 9.5. I did quite a lot on Sunday(I know, I know!) and was out at choir last night.....really enjoyed it. I had decided to test myself by standing the whole night.....oops. I also did all the warm up physical as well as vocal exercises. I could hardly get in to bed for the pain down one leg and turning over was extremely painful. When I got up this morning I had pain in both legs. Concentration was almost nonexistent and I felt wabbit. When the steroids kicked in the pain lifted but the brain fog remained. I have been out most of the day and now feel more normal again but realise I have had a little 'bite'. A wee reminder not to mess about with PMR. It has been worth it for the pleasure and feeling of satisfaction but a lesson learnt until the next time! 

Yes, I can vary speed on treadmill. I really like this one. I can and do walk outside over 5 minutes, as our mailbox is a hike from the house. I am in Michigan, and so far it has been really mild, one snow!  I also walk out in yard, as I have 2 fur babies, so I go out with them. My "happy place" aka as my sewing area, is in basement, so I also get a lot of stairs. We have 2 story home, so bedrooms upstairs!  Woooo, when I couldn't walk all summer, them stairs were done on my butt, and hands and knees going up. I am thankful now I can WALK RIGHT!  Amen for smal steps. 

Judy, did you find any online groups in the USA? I live in Florida - moved down from upstate NY three years ago. The shorter winter days combined with the cold up north just made my depression with my GCA much worse. I'm still depressed but being able to get outside helps especially if I can garden. Right now I can hardly walk due to my scoliosis and other spine issues. I've dealt with the back pain since I was 12 yrs. old so I think it will get better if I carefully exercise. I only joined this group a couple of days ago and they are very kind, supportive and helpful. I will stay with this forum but a group from the US would have Medicare, trials and other gov info. I don't know if you caught my posts the last two days but the medication I'm being put on to bring my pred down so I'm not damaging my bones so much (I do take calcium, D3 and Fosamx) with an already lousy spine is approx. $17,000. per year out of pocket - no Medicare coverage. Hoping to find a foundation to help.

Hi Jan, yes, there is a group in USA, I will find the address. They don't post often. I did join it though. There is also a Facebook page, but I was NOT aim pressed, and resigned from it. I really like this forum, but as you say, regarding $$$ and meds, it don't apply to us. If you contact me via email, maybe we can share some info easier. I have Medicare, but scripts thru my hubby. I will try to send you a private message here, ok?

There is a brand-new online group forum in the USA and one in Canada - but don't imagine a group in the USA would necessarily have the information you mention! You can find some of that yourself using your search engine with a bit of practice. The big trials are international - they won't be that different. But for a group to provide it in an organised way for their members means a lot of contact between the patients and the medics - and it is a lot of work..

To have a group with the sort of info you are thinking of is a major enterprise. Ten years ago in the UK there was this forum - and nothing else! There was a support forum in Canada and a small one based in the US - but they were message boards, nothing more. They disappeared over time, the US one got hacked and was too risky, the Canadian one just faded away. Several people from there joined the UK groups, this one and the northeast of England forum, at the time. 

Hi Jan, I see that you are in Florida and came from upstate New York.  I am in Florida also, and originally came from northern Westcheter Co. in NY.  I was wondering where in Florida you are;;;;;; I'm on the Gulf Coast in Sarasota/Bradenton area.  I was dx about 6 wks ago, started on 40mg, down to 30mg. in 1 month, and doing well.  I see my MD today and will see what he has in store for me, but I've learned so much through this wonderful site that I will be armed with info when I go and definitely give my input.  The 10% rule peaks my interest, I do not want to go back to the pain, stiffness and immobility. I do hope you feel better.  Elinor,Florida

,

I live in Edgewater, Florida just south of New Smyrna Beach on the Atlantic Coast. Now we have a house with no stairs making getting around easier. When I had PMR (living in Troy, NY) I couldn't get to my bedroom and had to stay on the sofa in the family room. Fortunately the PMR was helped by 40 mg. of pred very quickly and I only had one flare unlike my GCA which keeps returning and required 80 mg pred (usually 60 mg.) this last time.

I contacted my Rheumy and she suggested hydroxychloroquine. What are your thoughts on that. I realize there is nothing like Pred. I read about it and it doesn't seem like there are as many bad side effects. 

Like any of the DMARDs (disease modifying antirheumatic drug) which are used in arthritis it won't REPLACE pred. It is possible - but not guaranteed - that it will change the way your body processes the pred so that it enhances the effect and you get a better result for a lower dose. But it - and all the others - have their own side effects and how much they will affect you cannot be forecast. You will still need some pred - how much of its side effects will remain can also not be forecast so you could end up with a double whammy. And the side effect listed for either are for that drug on its own - in combination it may be different. If the DMARD enhances the effect of the pred against the inflammation it may also enhance the side effects - you can't tell in advance.

You have GCA - and the pred or any other drug will have no effect on the underlying autoimmune disorder that is causing the symptoms, it is just reducing the inflammation. I had PMR for 5 years before I ever took pred - and I can assure you that for me the sweats were as bad if not worse then as with taking pred later. The underlying disease causes all sorts of things - including sweats, the fatigue and feeling ill - so you can't say all those things are entirely down to pred.

All you can do is try it, no-one, and that includes the rheumy, can tell you how it will affect you. What you DO need to do is make sure you don't encourage flares in the GCA by trying to reduce the pred dose that is managing the inflammation too soon or in too large steps - top USA experts said some year ago that the most common cause of flares is doing that: if you reduce in steps that are never more than 10% of your current dose it seems to help. And at lower doses or if it is obvious you are very sensitive to dose changes then the reduction should be even more cautious. That was the basis of the "Dead slow and nearly stop" appproach that we advocate on this forum. It has worked for others who struggled to reduce.

What are your GCA symptoms?  I do get little 'twinges" in my head and wonder what that is?  I'm on 30mg. for 3 months, when the MD will start tapering more, but slowly  Glad you have a one story house, it's so much easier.

GCA symptoms include headache, jaw pain when chewing that goes away, scalp pain, blurred or double vision, feeling as if you have flu, fatigue and the PMR symptoms too. Unfortunately(or maybe fortunately)  you don't get all of them and you may get very few of them - it all depends which arteries are affected - so many doctors are sceptical when patients don't present with the symptoms they think you should. But if you already have been diagnosed with PMR and start to get any of those symptoms on top then you need to see your doctor about it. If you have any loss of vision - even fleetingly or partial - then you need treatment urgently. If you can't see your usual doctor straight away then you would need to go to the ER. 

However - don't panic about it, only about 1 in 6 patients with PMR do go on to develop GCA and really you are at an advantage since you know it is a possibility. In some people only the GCA symptoms appear and they have no idea of the significance of them. The important thing is not to delay seeking medical help if visual symptoms in particular occur.