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A message of hope

Posted , 10 users are following.

EileenH
EileenH

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!

11 likes, 33 replies

33 Replies

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  • Oregonjohn-UK
    Oregonjohn-UK EileenH

    Posted

    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'
    • EileenH
      EileenH Oregonjohn-UK

      Posted

      What have you been up to!!!! No reduction unless you are fully recovered now!!!
    • Oregonjohn-UK
      Oregonjohn-UK EileenH

      Posted

      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).

    • EileenH
      EileenH Oregonjohn-UK

      Posted

      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... ;-)
  • Judygirl
    Judygirl EileenH

    Posted

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

    I wish you much happiness and joy in the future.

  • Mrs.Mac-Canada
    Mrs.Mac-Canada EileenH

    Posted

    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

    • EileenH
      EileenH Mrs.Mac-Canada

      Posted

      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!
    • jean_b
      jean_b EileenH

      Posted

      Hi eileenh -just reading all posts and so good of you to print out elisas story it is so uplifting for us all.now can i ask you what may seem a silly question .but i did ask you a while ago about rducing from 5 mg pred slowly and when i do -introduce the 4 mg (slowly) will it be by using all white pred or use one red 2.5 plus 1and half white -im probably thick (you dont have to agree there though lol)  thanks for all your help for us all here 
    • EileenH
      EileenH jean_b

      Posted

      How did you reduce from 10 to 5? Was it also by using a mix of enteric coated and ordinary white pred? 

      The problem with mixing enteric coated and ordinary is that the enteric coated takes up to 6 hours to get to a peak level in the blood, the ordinary white ones get there in a couple of hours. I'm not sure whether this is a good or bad thing! What it has occurred to me is you could take enteric coated late at night before bed - it would be active by the morning and help the morning stiffness and then you could take the balance as white tablets first thing in the morning to add to the effect. I did chat about this with a research medic and she thought it was possibly worth trying. 

      If you needed to stick to entirely enteric coated you could try using my very slow plan but slow it down even further by taking 1 day of 2.5mg and back to 5mg for maybe 2 weeks and also do at least 2 weeks of each stage, if not more. I know a couple of people have tried that and it seemed to work OK. Alternating old/new in various proportions has been suggested for a long time to reduce the change in dose when using enteric coated in particular, even at the higher basic doses.

  • Mrs.Mac-Canada
    Mrs.Mac-Canada EileenH

    Posted

    Thanks Eileen😊!  I will be very careful.  I don't want any problems and will go back up to 4mg if it seems to be getting worse.  I'm not in a big hurry but it would be nice to cut out one of my meds.
  • jean_b
    jean_b EileenH

    Posted

    Thank you eileenh for answer to my  question of reducing slowly down to  4 from 5 mgs pred.yes i did mix the reds with white when reducing down from 10mgs -but at thatpoint i was taking them after breaky .and now take preds at 2am in morning as advised  (and it works better tbis way thanks) but do you think  as the white preds take onl two hours to act -that i should take them  a few hours later .have you or anyone else taken the white preds only in the night -i feel as though i would prefer to take the all white on very slow reduction than  split the reds with white at this dose but  need some feed back as am feeling very anxious over which way to go --thanks
    • EileenH
      EileenH jean_b

      Posted

      No point being anxious - just try. If your stomach is fine then just use white tabs, lots of people have to do that anyway. Enteric coated pred is not available in many countries - they have never heard of them here!

      It is the white tabs you should be taking at 2am, the enteric coated could be taken before going to bed as they take up to 6 to 8 hours to work which is probably why taking your white ones at 2am helped the morning stiffness - that is the idea of taking them at 2am, it prevents the morning stiffness being so bad.

  • barbara75814
    barbara75814 EileenH

    Posted

    Heavens, I didn't even know there was an enteric-coated pill! Q: is it available in the U.S., do you know?

    Today I saw the rheumy one week after my first visit to him, when he put me on 20 mg. Pred taken 5 mg. at a time, morning to night.  My symptoms improved greatly although I still have some pain.

    Today he said the sed. rate wasn't terribly high, and gave me a piece of paper instructing me to start reducing the Pred dose as follows: "Taper prednisone 15 mg. (3 x 5 mg.) tabs every morning with food for 1 month, 12.5 mg. (2 1/2 x 5 mg. tablets for 1 month, then 10 mg (2 x 5 tabs) daily until next visit in three months."

    I have been a patient for only one week, and a) I'm not sure exactly what to do, nor am I b) sure I should be reducing after just one week of Pred. and some remaining pain. It seems like a rather precipitous reduction, would you think?

    Also, here's something strange: I read that sometimes use of Prednisone causes ankle/foot swelling. For some months prior to pmr I have had significant swelling (so bad I couldn't wear shoes) and tried to come up with the cause with my primary physician without success. 

    Now, one week after starting Pred, all leg/ankle/foot swelling is GONE!! I wanted to discuss it with the rheumy today but didn't manage to. I'm glad the swelling is gone, but very curious about why apparently the Pred. caused it!  

    Thanks for anything you can share, and regards--

     

    • EileenH
      EileenH barbara75814

      Posted

      Enteric coated is not available in many countries - no idea if it is available in the US.

      Your foot swelling was almost certainly the PMR cauing inflammation and swelling - peripheral oedema is one of the symptoms. In some people pred causes fluid retention - but yours was there pre-pred.

      Your reduction is not too bad - he is taking you down to the normal UK starting dose for a start but you could try going via 17.5mg for a week, you can get pill cutters from any pharmacy (in the UK at least). You can slow down if you don't manage to tolerate his drops but it is very similar to the scheme the Bristol group recommend (have I given you the link?) where they keep patients at 10mg for up to a year depending on their symptoms.

    • tina-uk_cwall
      tina-uk_cwall barbara75814

      Posted

      Morning Barbara, I agree with Eileen that your reduction programme is not that dissimilar to our reduction programme, and as she says if you are really worried about the drop from 20 to 15 to go instead to the 17.5 first.

      like you say he already wants you to start this reduction and you're thinking well I've only been on the 20 for a week and I've still abit of pain. Also, although his reduction plan is similar to ours there is only 1 month at each stage of reduction. I had to up my  preds to 10 following a flare up. My Dr suggested I stay on that dose for a month, well I want to stay on this dose for 6 weeks, so I will do. There's plenty of reasons that you can use for not reducing at the 1 month mark and instead for your peace of mind staying on each dose for 6 weeks. I'm telling my Dr that I had a cold so didn't think it was wise to reduce when I wasn't feeling well. Then you could also be taking a holiday and didn't think it was wise to reduce as you were under such stress, etc, etc. then by the time you've got your next appointment you've reduced at your pace and there's not much they can do about it then. 

      That's what I do. But Barbara I am not medically trained, but I have read PMR Bristol plan and others and believe that my treatment plan should be as close to that if I am to receive the best treatment.

      also, again as I said I am not medically trained, but I would want to stay on your starting dose of 20 for at least a month. Christina

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