A message of hope

Bones, joints and muscles
1

I got this as a pm this morning. It speaks for itself:

Dear Eileen, I hope you are well.

You have not heard from me for a year but as you used to be a very frequent contributor I hope you will still get my message.

I can not remember how to write a message to all, that's why I am sending it to you and hope you will make it accessible to all.

This message is important because it is a message of hope for all who are suffering as I have suffered.

Yes I am using past tense. 

You might remember that, after having had breast cancer twice, I woke up one morning unable to move because of excruciating pein in my whole body.

I was diagnosed with polymyalgia rheumatica and treated with prednesolone (25mg) which made me very very sick. Beside putting on 20 KG fluid, I became half blind, my hair fell out and every organ of my body played up. I also needed additional Morphine patches for the pain.

After a year I refused to stay on this dreadful drug and got slowly down and took only morphine patches instead.

My body recovered, I lost the weight and my hair regrew.

After using morphine for a year I woke up one morning and felt no pain. I went cold turkey from 35mg down to 10mg morphine and was fine. After 2 years the

polymyalgia has disappeared as suddenly as it appeared.

So, to all of you, don't lose hope! I have been through hell and backwards and came out like the phoenix from the ashes. Praise God!

My very best to you Eileen and to all who are suffering.

Elisa

i would like to emphasise that Elisa used morphine patches only because pred caused her very severe side effects - it really isn't a real alternative for most of us and I do know some people found even morphine didn't cut the pain of PMR. It also does nothing to reduce the inflammation which is also causing damage.

I've posted it to show that PMR can and does go into remission. Elisa was lucky in that it only lasted a year - I had PMR for 5 years pre-pred and it never burnt out! It's always difficult to tell while you are on pred - but last time I tried to reduce to 5mg something was still there!

2

Wow!  Well done Elisa and may she now have a long and healthy future in front of her.  Many thanks for posting this Eileen - a big morale boost and message of hope to everyone here.

3

Hello Eileen H, I have literally only just got up, come downstairs, let the dog out and swallowed back my preds. I'm now looking at all of last nights postings while the coffee machine makes me my coffee.

i always think I'm so hard done by because before PMR I would have been up by 6.30am and I would have been doing this or that by about 8am. 

Your posting from dear Elsia is a real leveller. What she has gone through with not just the PMR but the breast cancer too and she's come out the other end with a big smile is truly remarkable and wonderful.

all my best wishes for Elisa, and thank you Eileen for forwarding on her amazing story. Christina

4

What a wonderful message of hope for us all! I wish we could hear from more people who have waived goodbye to their PMR. Good luck to Elisa and thanks for printing her message. Angela.

5

A message of hope indeed. Thanks Eileen for passing such a joyous message on and my very best wishes for the future to Elisa and all others in our club. Dave.

6

There are several members of Club Zero over on the northeast of England support site's forum. I tell you to come on over - but at the moment it is playing silly what'sits and it is next to impossible to use for some reason!

Two ladies who have had it twice are there, a couple of ladies for whom it took just a couple of years (one with PMR and one with GCA) and a few with sort of 3, 4 or 5 year histories. And of course, the founder member Ragnar, our Swedish gentleman who worked out the first slow reduction for lower doses!

7

Wow, how wonderful, hope for us all....I hope this lady`s good health continues, what a battler!  Just goes to show how different we all react to drugs, and some times we have to work it out for ourselves....and with the help of this wonderful supporting forum!!

8

What a wonderful New Year story.  Thank you Elisa.

Constance

9

Elisa's story makes me ashamed to think I often felt sorry for myself just having PMR! Things just need putting into perspective, don't they?

10

I often say, if you have to have a chronic disease then PMR isn't too bad. It may be a pain in the butt but it doesn't kill and can be managed reasonably well most of the time. There's far worse to be found.

11

I too thank Eileen for sharing this wonderful story and thank Elisa for letting us know she has made it through.  We all need this encouragement and I do especially at this time of new onset of PMR - so much to learn and the doctors do not have all of this information to give me...

I do have one question about this subject if I may?  It seems like a person with PMR should find total pain relief with the proper dose of prednisone and not need any other pain killer?  Do I have that right?  It also seems that NSAIDS do not really help with the pain of PMR (not to mention that combined with prednisone they are dangerous to your stomach).  So, am I to look for 100 per cent relief of pain from the prednisone or can the relief be less than 100 per cent and the treatment still working?  Thank you.

12

Great news to start the New Year - thanks Eileen for posting Elisa's letter.  I'm starting a reduction to 9 mg next week after my disaster with day surgery and a urgent visit to A&E the same evening.  Just hope the stress level is now back to 'normal'

13

What have you been up to!!!! No reduction unless you are fully recovered now!!!

14

Hello Padada and welcome!  It is generally expected that we should feel around a 70% reduction in our pain levels within up to a week or so of commencing steroids, sometimes within hours.  Some lucky people then go on to have a pain-free journey as they reduce their dose but that is by no means the norm - in fact, very few people achieve complete resolution of their pain.  I was never completely pain and stiffness-free throughout my years on steroids but they did allow me a reasonably good quality of life.  Whilst on steroids, I never took additional painkillers, having tried both Paracetamol and Ibuprofen in my pre-diagnosis months without much success - they still left me bed-bound.   Once on steroids, if I suffered what was an obvious flare with raised blood test markers, I would increase the dose back up.  However, if a worsening of pain occurred immediately following a reduction then I would 'hold fire' on increasing the dose for up to a week or so to see if my body adapted to the reduced dose.  When newly diagnosed it is difficult to tell the difference between what is a true flare and what is steroid-withdrawal pain but it does become easier for us to recognise the difference as we become experienced in dealing with PMR, and listening to our bodies.

So to answer your last question, only the very lucky few have 100% relief from Pred - to experience a certain amount of pain and stiffness, especially in the earlier part of the day doesn't mean the treatment isn't working.

15

Me - nothing the hospital doctors were the problem - nothing connected with PMR.  At the pre assessment the very efficient Sister took all the notes about being on Steroids, in fact underlined them, BUT the dear F1 who should have read the notes on the day took no notice of them.  On discharge I was prescribed NSAIDS and what should have been Antibiotics (confirmed they were not by the A&E Doctor later that evening), tried to inform the Staff nurse who gave me them it was a no no - but she insisted the doctor knew best and anyway they were all too busy for her to check!!  

I had delayed starting any reduction until after the hospital visit and have extended it until next week to make sure I'm able to cope with it without any undue stress (last reduction was back in November with a reduction over 3 weeks from 11 to 10 mg).

16

Where have heard such stories before!!! You know, we shouldn't be allowed to get PMR and stuff before we have completed either a medical degree or a pharmacology degree! I had a similar run in at discharge with the equivalent of an F1 (I think, she was totally junior anyway) - and I took great pleasure in reporting her to a senior when I had a check the following week and she identified all the things that hadn't been done. The little s%6& told me I was disturbing her coffee break when I went to the effort the day after (and I could barely walk at the time) to try to sort out the mess. I felt too ill to dispute any more, I just stood in the ward with tears running down my cheeks. Hope for her sake she never meets me now I'm healthy... ;-)

17

What courage and how amazing is the human body and spirit.

I wish you much happiness and joy in the future.

18

Hello padada, it seems odd welcoming others to this site, but welcome anyway and good luck with your PMR recovery.

i was diagnosed with PMR dec 2013 although I had the symtoms since the September. Like most PMR sufferers I was so stiff and in so much pain pre diagnosis but within 4 hours of taking my first dose of 15 mgs of prednisone nearly all stiffness and pain had disappeared. Then within the week I was almost back to my normal self. Having said that I still occasionally get the odd twinge in the hips, shoulders and neck but normally that goes within a few days. The pain resurfaces normally when I have a gold, or cold sore coming and I guess my body is saying that it has rather too much to cope with at the moment! 

I have suffered 2 flares although I count it as one, because I had a flare up, in response upped my dose, the pain went away and so stupidly I reduced my preds again within 2 weeks of the 1st flare up. I then had to up my preds back up to 10mgs and I'm still on them and have no intention of reducing them for a total of 6 weeks or longer if I feel i need to. 

The secret is to not reduce too quickly, no matter what your GP says. The preds must control (not the right word to use) the inflammation, not the other way round. The PMR will burn out or in some cases fizzle away for along, long time and no matter what drugs they give us it will burn out when it wants to and not when a Dr demands it to by lowering the preds. 

Now you are on preds, the only drug that can mask the inflamation (because it's always there) is prednisone. Some drs if they feel you are taking too long to reduce will attempt to introduce a drug called methoxidrate, Spelt wrong! There is great discussion as to wether this drug has a place when used with PMR. My opinion is NO. It is not recommended in any of the research papers so I am going to steer away from it for as long as I can.

i have on very limited occasions taken paracetamol if I have a headache or I've overdone things, if the pain goes away I tell myself that the pain I had was something other than PMR pain. But normally I know as PMR pain is very specific and it's a pain that I never experienced before PMR, so I always attempt to gauge my additional pain with the PMR pain as a reference.

as you say it is not a good idea to take any additional anti inflammatory drugs, eg, ibuprofen, they definitely are very bad for the stomach.

i also take calcium, magnesium, vit c, d and a b complex just yo help things along! But the secret to 'recovery' is taper slowly, slowly. 15 mgs, 6 weeks, 12.5 mgs, 6 weeks, and 10 mgs, for anything up to a year. Good luck, christina

19

I am happy for Elisa that her PMR burnt itself. It the hope of all of us and it certainly is different for everyone.

I have had PMR for just over 2 years including a few months that weren't diagnosed. I'm currently trying to reduce to 3.5 mg using the very slow method after being at 4mg since early Nov. I can actually tell that my body knows because I can feel it in my butt (my tell tale area). I think this is likely pred withdrawal but i have to say that I, like everyone else with PMR , am looking forward to the day that it decides it's time to go away.

Hugs and hope for pain free days to all

Diana

20

Diana - unless you have had this before and it went away with the slow withdrawal, don't assume it is withdrawal! It has taken me 5 years to get to 4mg - and 3 was a step too far yet!