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Hello to all our new folk, sadly with PMR.
This is a great place to discuss, ask questions and vent ( get mad) with people who will understand the frustration of this 'disease.'

I will quote MrsUk who gives us very good advice:

    "PRED IS NOT OUR ENEMY.... PMR IS !!"

I know we all talk about getting off Pred and its side effects,
BUT, I have just been reminded of what PMR feels like without Pred and now that I'm back on at 5mg I am feeling so alive, its Good!

Gentle Hugs to all, Lyn
Hi Lyn, thank you for your welcome to us newbies. It helps to read and discuss with others this awful problem. I hope by increasing my dose of Prednisolone I will start to feel better, kind regards, aussieg. I did wonder about your name, another Aussie on here too! I live in Horsham, Victoria.
I hope you are more comfortable with the Pred increase.
Hugs LynHi Lyn, I am also from Victoria, I come from Moe. I don't know anyone from my area with this problem, so it is nice to talk online to others who understand. My Dr also finds me a challenge!!I go back to see him on Friday. I am suffering badly with pain, so need to sort things out with him. I still keep dancing though!! takes my mind of the pain. Looks like it is not always a short term disease, damn!!Hope you are having a good day today. Lots of kind regards and positive thoughts, aussieg. Hi Lyn,

your words are so true, and we need to really hear them often, as thinking we have to lower the prednisone becomes such a huge issue, that we sacrifice our well-being and life style to be on a lower dose.

As soon as the word hibernating , comes into my vocabulary, I realise that i am avoiding living and just staying at home, to cope.....haha....all to lower the pred, but with such life-limiting consequences.

PMR runs its course, we have to push the limits, test ourselves, check the dose, lower ever so slowly, and raise if we are hibernating!!!

Good luck all, and wish me luck today ,would love to cease meth, but did that 2 years ago and I really went downhill.  Fingers crossed

Hi Jen, how did the Rheumy Visit go? I had been thinking about how you were and lo and behold you pop in here!!
 
 I was going to ask you if you noticed the MTX helping? From your post I would say you did 2 years ago. I am asking as I cannot seem to be able to go below 5mg or maybe 4mg Pred and I am also on 200mg Plaquenil and 15mg MTX. I have been asked if MTX made a difference and I honestly don't know! When I stopped Pred in January I had been miserable since dropping from 4mg slowly in 4 months. I was hoping that the MTX and Plaquenil and Tramadol and Endep that I am still on would have made reducing Pred a breeze... but it did not seem to make any difference.
 
I am now back on 5mg Pred and PMR is pretty good. Still nauseated from MTX and having reflux issues that have just started this last couple of weeks. I take 40mg Nexium and have had to take another tablet on quite a few occasions.
We had a lovely roast dinner tonight at our daughters and I had taken my Nexium before we went. Meal nearly finished and bang chest pain through to back and burning all the way up into my throat. Husband went home to get me more Nexium. It is still just, under control now. I have an appointment with my Dr next week and I guess I will need another Esophageal  investigation.
Didn't mean to post all this but as I have hope you can understand it??
Hugs to all, Lyn
PS is anyone else having trouble posting.. I have changed computers.. so here goes again!
I have been off Pred for 1 ½ years, but it took me 3 ½ years. I agree that pmr is the enemy and not the Pred. It is better to go on a low dose of Pred and feel well than get off and feel pain.
 
It took me one year to get below 5 mg. I tried and tried. Then I tried a new regime. N = new dose, O = low dose. I took doses each day like this
 
N  O  O  N  O  O N  N  N  Therefore, it toook me about a week to get over to the new dose. From 5 mg I reduced by 0.5 mg a day and stayed on the lower dose for about a month before trying to go further. If you don´t succeed, try
 
N  O  O  N  O  O N N O N O N N or continue even longer alternating N and O
 
I understand that many sufferers have followed my advice and found it better than they had tried before.
 
Good luck!
 
Ragnar (from Sweden, which has been cut off from all air traffic for more than one day - just heard that they opened some nothern airports again after the ashes cloud has passed southeast - you cannot imagine air traffic being closed in over 12 countries in Europe at the moment) 
Kind regards, aussieg. aussieg, sorry you have been in so much pain. I am pleased you have a good Dr who understands PMR. I used to feel like "Super Woman" on the higher doses and it feels so good to get rid of that Pain! Think how much improved your line dancing will be and you may have to take care not to overdo...
Hope it will all go away for you soon, in the meantime, just be kind to You!
Gentle hugs, LynHi Luckycauk, the Pred does come with a very long list of side effects but as there is no other drug that gives pain relief as good, we must try and minimize what we can. Regular Dr visits and blood tests etc, in other words be proactive in taking care of "ME".

The weight gain, jelly belly, round face ( no wrinkles x,)buffalo hump, easy bruising especially on my right hand, the Fatigue and memory, Gone Yep my vanity has taken aaaaa divvvve !

PMR.. no one has ever heard of it,... but you look so good ( yes fat!!)

and then there are the added medical conditions: osteoporosis, fractures, blood pressure, cataracts, Type 2 Diabetes and of course no alcohol if you are on MTX.... apparently there are about 80 different side effects I read somewhere that I have now forgotten ... Pred's fault xxx

The link you asked about "pred withdrawal and re-occurrence of PMR"
I feel the Pred at certain levels 'works' and if we go lower and its not working as well, its not re-occurance because it has never gone away, only the pain and stiffness have been under control. And Yes this can and does go on for Years. I have met a 92 year old Lady who has had PMR 3 times with a break of a few years in between. This is re-occurrence to me. Her 2 daughter have PMR as well.
gentle hugs, Lyn
Hi Lynn,

 Yay I am off the methotrexate.  BUT I had to promise rheumy to let him know immediately if I went downhill. I am not to touch the pred dose for 3 months, i.e. 2 1/2mgm.

I am feeling confident as the mercury in my system has finally gone also.I do think that as the pred has been lowered lately, i am getting the old chronic back problems, but it is different to PMR and I am dealing with that  with chiro/osteo, panadol and yoga.

I am sure that the meth helped me lower the pred, but it is such a bore not being able to have a beer or red wine, or if you do, wonder what you are doing to your liver.

I had IMI meth, and I did it myself weekly, as I was an RN.  I got to the stage that the smell of the alcohol swab made me nauseated. It was only when I found that having the meth, interrupted a perfectly good week  when I did not know that I had PMR.... that i felt it was time for a trial off it. 

I have great faith in my rheumy, although at times I have been a trial.

I found that some days the meth affected me more and others it was a non-event.!!!

I do keep naked uncrystallised ginger on hand. Also have taken to drinking boiling water poured over fresh slim slices of ginger root(about 1 1/2cms all up) witha tiny splash of pure maple syrup added.All to cope with nausea, but meth also fatigued me.

Am so sorry to hear about pain from reflux also...

I have no answers for this PMR, thought I could beat it quick , it has now been 4 years, seems it is just a matter of getting up each day and dealing with how you feel, and managing meds , so that you have are participating in life, and not just focused on reducing pred.

hugs to all Zali  (jen)
 





Thank you Lyn, the pain has already eased off so much. I absolutely agree with you about overdoing it.  This is where I am sure I have got myself into trouble before. Like you say you feel so good you do try and do too much.I have been out line dancing this morning, so that is it now. Are your other health problems connected to P.M.R. Is this where it all started with you? I hope you don't mind the questions, but I do wonder whether  there is a connection or not. Hope you are having a good day. Kind regards, aussieg. Hi Zali and aussieg and all fellow Pred Heads!!!
Jen so pleased you are well enough to get off MTX.. I'm keeping everything crossed for you! I will also try your ginger mix..

aussieg, afraid the only side effect that I do not have is Type 2 Diabetes. I have had back problems for years and osteoarthritis ( the meds for the osteo gave me the esophageal ulcer). Some of the others were inevitable with a strong family history of all arthritis's. My Mum 87 is in a nursing home, 11 years now, and has Glaucoma, colostomy bag, both shoulders replaced, both knees replaced, osteoarthritis and osteoporosis fractures all down her spine. She is now totally bed ridden.
I won't add my other relations in here.. not enough room.. xx

Mum has a wonderful memory and enjoys a laugh, not all gloom and doom!

Went to my Dr today and ESR up to 39 ( was 10 last month) and CRP up as well.. He suggested I have
my MTX with a late evening meal. Check bloods again in 4 weeks and go from there again! Maybe up the Pred or MTX. Bugger! But I am feeling okay. I guess with Tramadol, Pred, MTX, Endep, Mogadon and Plaquenil and others... I should be..!!!
Hugs to all, Lyn

I have also pulled my shoulder ( did not tell DR) I am hoping it will go away and not be a frozen shoulder, I had this in this shoulder about 16 years ago and it took ages to get better!! There is always something!!



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