diagnosed in March2017

Hi, thanks for your response.  My GP did the same to me, like a yoyo.  That was because he really did not know what my problem was only that when I was on prednisone I felt so much better.   At that time my bloodwork was okay.   He did say that you can get a kind of feeling very well experience when on prednisone.   I am going to increase my prednisone starting tomorrow as I am having a lot of pain at the moment.   We like to get away in the summer we have a trailer in a campsite we go to, but honestly it is just to much work and difficulty at the this time.    

"He did say that you can get a kind of feeling very well experience when on prednisone."

You know - I'm beginning to wonder if the reason so many doctors believe this is because they have used it in a lot of patients who actually had some form of pred-responsive autoimmune disorder. Pred really doesn't make you feel fantastic - except that it has relieved a load of symptoms that making you feel unwell and you are more back to normalish (more and -ish becauseno, contrary to their beliefs we are NOT back to normal).

I actually find I like going away with our campervan - I feel less guilty at not doing housework 

I am beginning g to realise this. I have yet to have a pain free  day after being on 50mg for 10 weeks, and 37.5mg for 2 weeks. The day I started pred it reduced the pain to a tolerable level and has been tolerable ever since.  I've handled this first dosage reduction...just....but ....I REALLY REALLY struggle with the "take it easy and rest" part when I am only just losing the energiser bunny pred response. Just starting to sleep at night as well. Pred helps the symptoms, but obviously for me the inflammation is still  there and causing issues. I wish there was a magic pill to get rid of it because I don't seem to be doing a very good job of it on my own. And I've tried rubbing  magnesium oil, Frankincense oil, taking homeopath special mixed remedies just for me, all sorts of supplements as advised by the rheumatologist e.g calcium, zinc, fish oil. Have been told I'm doing everything right....but I know I'm not resting as much as I should because I can tolerate the pain and only occasionally at this stage get the exhaustion. Even though I have trouble walking I still do things when I'm at home. Will have  to train my mind to make my body physically stop, say, at lunchtime....I need to get this inflammation OUT. Next week will be  easier, we are are taking our RV to the beach for a week. Wine, sun, surf, sand, no cookng (hubby can do BBQ's or we'll eat out). Not a 

lot  for me to do except relax and enjoy. Bring it on 🥂🍾??🚍

My point exactly! We're taking our camper down to near the town where OH will be having radiotherapy - no beach (not a beach person) nor Lake Garda where we would normally go but there will be vines just feet from our pitch and loads of things to do and see!! Our regional wine is wonderful  and the choice there will be far above what we get up here in the mountains. What's not to like!

Reeceregan, I am also taking Turmeric for the inflammation, I really do not know if it helps, but I am at 17.5 tapering down from 30 mg, PMR pain free. This on this journey with a smile. 🙂

I knew I'd forgotten something. Yes, I'm taking Tumeric as well. And that's the thing, I have no idea if any of it actually helps, but not game NOT  to take them in case it does. I am never pain free, even when on 50mg, it's only the level of pain that changes, depending on the day I'm having. Looking forward to getting the dosage right and taking it from there ...also with that permanent smile. Just like you. 💪😁

Reecerigan, I ran out of ginger a while ago and didn't have my evening cup of ginger tea for about two weeks, and I swear it was during that time I started to feel worse.  Really, the only change, as I'd tried a tiny taper, but cancelled it pretty quickly.  So I agree with you.  If something seems to be helping and is doing no harm, might as well keep with it!

Thanks Celia, I think I was reducing the 20 mg far too soon but that's what the dr recommended.  Have gone back onto 20 mg and will see how I go.  Can't believe that just 3 weeks ago I was happily climbing a mountain, start d callenetics and generally in excellent  Health.  Amazing how ones life can change overnight.  But life goes on and I wouldn't let this take over mine.  You ladies so helpful as this is such a learning curve for me.  Thank you

Hi Sandy,  I like yoour comment "once I was told what was happening to my immune system it made sense."  I am in canada and I have a medical background.   However I find that very few of the Drs. take the time to explain the disease process,  what you can expect etc.  to you.   That is what I llike so much about this forum.   My rehumatologist has told me anywhere from 1 to 5 years to be on the prednisone.   At this stae I am certainly not hopeful for 1 year only.  Glad to hear that you are recovering and have gotton off the prednisone.

 

Hi Carol - keep up the hope. I changed doctors because one treated me like a patient to sit quietly and do as I was told. Ha ha. That was never me!! I said to my new doctor that I wanted to know all so I won't obsess at the merest twitch; to know whether the crap I was going through was caused by the disorder or side-effects of the drugs - they were all the latter! (Come off the drugs, eventually, and back to normal again, they said.) She obliged. 

Even though I don't have a medical background, could keep up and what was said made sense. During all the consultations, tests that I had, I found the hospital doctors were eager to explain in detail. I insisted - and they agreed - to keep me in touch and they share their case notes with me and my GP. I have been told as CGA was detected early and started prednisone immediately, progress has been swift. They don't see any spread to other parts of the body and are confident there will not be any reoccurrence of CGA. Their encouragement makes a great difference to recovery. And for once in my life - I do as I am told! 

Biggest bonus is living in a country with a good (free) world-class national health service!

Have more good days than bad. Cheers - from Auckland (NZ)

 

Remember that pred only MANAGES the symptoms - it does NOTHING about the actual disease process. They may be confident - but they don't and can't know how your personal autoimmune problem that underlies the development of the inflammation will progress. It may recur as you reduce the pred dose - and there is nothing you or they can do to change that. 

They'll be monitoring it every two months. 

Thanks sandy

We are fortunate to have a wonderful universal health care system as well. the main concern with it at the moment is the increased number of baby boomers who of course are experiencing medical problems related to age.  So the costs are increasing and everyone is getting excited about how will we manage.  Of course they have known this was going to happen and been talking about it for the pasty 15 years at least but have done very little to address the concern.   The main problem lately is the terrible wait time to get in to see any specialist.   If you are critically ill and end up in hospital or ER you do not wait,  but if you are at home you can wait months to get an appointment.

Would love to get to NZ someday,  I have a wonderful girlfriend Erin who is original from there.  Married a Canadian and they have a sheep farm here in Ontario.

 

Too true, carol ann.  A number of years ago the powers that be decided there were too many medical students at the Dal medical school, so they cut back the numbers.  Just in time to create a critical shortage of home grown gps at the moment that not only would we boomers be aging into decrepitude, but the doctors who are also boomers would be retiring in droves.  

Had a week in NZ, scary to think it was nearly 20 years ago.  Absolutely loved it and planned to go back for a longer stay, but the gods conspired against us and now I suppose it won't happen.

Then there is the UK government who have just claimed they are going to train 1500 extra doctors - who will be on-stream by 2020. Since there aren't currently enough places at medical school for that and it takes time to set up courses, not to mention it takes more than 3 years to get a MBChB degree - I'm not quite clear how they think they can do it! Unless they are going to offer conversion courses for existing healthcare staff - nurses, paramedics and so on. But they are short of nurses and paramedics too. And had the brilliant idea of charging nurses £9,000 per year to train. For a career where the vast majority will never earn over £30K...

never say it wont happen Anhaga.   We never know.

All of our nurses train in universities or community collages now.  I trained in a hospital, three year program.   We received room and board for 2 years.   Our third year we lived out and were paid 100 dollars a month.  On graduation we had no debt, and usually a job right away.    5 years later there were no more hospitals training nurses.   University costs are phenomenal, they all come out with hugh debts and often cannot find full time work.    Progress is great.

 

I know - the UK government seems to think following in the USA's footsteps is guaranteed to bring them success!!!! It was the same - nurses worked and trained for 3 years to get State Registration in the same way as you did. Then it was decided they needed a degree - but now they have all chiefs and no injuns because the State Enrolled qualification was done away with. They have Healthcare Assistants but it doesn't seem to work the same. My older daughter is a nurse - just got in and finished before it would have cost her - but she will do bedbaths and bedpans because she knows it will shed light on her patients' condition, many of her colleagues won't though. One grandson (not hers) wants to be a nurse - although I doubt he will get in - but I wouldn't encourage him or anyone else these days. The debt they develop is absolutely not worth it. I'd rather he went to be a plumber! And this isn't coming from someone who doesn't approve of a uni education - but it isn't worth that sort of debt at the end.

Back in the 1970, most state universities were inexpensive or free. That ended and now: (According to the Federal Reserve Bank of New York, outstanding student loan debt in the United States lies between $902 Billion and $1 Trillion with around $864 Billion in Federal student loan debt.) It a terrible draw on the economy. The high cost of education is starting young people off behind the 8 ball, sad!