Seasons Greetings
Posted , 16 users are following.
Hello everyone,
It's been a year now since officially being declared in remission from PMR. Emotionally and mentally it's been a great place to be. No more preds! Slowly throughout the year I've lost a stone in weight so I'm moving about more and a lot easier but it hasn't all been plain sailing. Whilst on the very low doses of preds I noticed pain appearing in my right hip that over last Christmas was unbearable. Following visits to the GP I was referred to a physiotherapist who declared that there was absolutely nothing wrong with my hip but my problem lay with my right side lower back muscles. I was given a strict daily regime of exercises to follow and the pain has improved no end. Obviously I have the odd day especially when I've over done things but on a subsequent visit to my GP he did ask if I'd suffered from a right hand side back issue in the past. I replied I had many many years ago and he immediately replied that whilst on reasonable levels of preds these drugs were able to mask any inflammatory issues with these damaged muscles but once I reached very low levels and then none there was nothing helping this existing injury. He added that the combination of the pre existing injury (that was basically long term damaged muscles) plus the weakness caused to the muscles from the PMR and the preds it would take a while for them to become strong again and that my daily gentle exercises would probably be necessary for a long while yet.
I'm telling you this story because it's important to understand that not every pain we get is a symptom of PMR. Because the condition and the medication weakens our muscles to a degree old existing injuries are more likely to be exposed, but that correct gentle daily exercise could help enormously.
Obviously I'm hoping to continue losing more weight and at the same time work to get myself healthier by more gentle exercise.
My PMR journey was peppered with diagnosis mistakes initially but once under a consultant who by the way embraced the dead slow and almost stop method of reduction was not too bad an ordeal. I was diagnosed at 52 and my journey in total including 2 flares took 5 years, so there's hope for everyone. But, as Elaine always says the condition dictates the level of medication and not the medication that dictates the condition. These forums helped me enormously and I still read members posts and I'm so pleased they're here with members who offer wise words and advise.
All that remains for me to do is send you all the warmest of Cornish Best Wishes for Christmas and the Coming New Year. With Kind Regards, Tina.
7 likes, 19 replies
EileenH tina-uk_cwall
Posted
Good to hear from you! Have you also posted on the zero pred thread?
tina-uk_cwall EileenH
Posted
Oh no. i didn't know there was one. I shall take a look.
EileenH tina-uk_cwall
Posted
https://patient.info/forums/discuss/zero-prednisone-discussion-450915
It is always a help to have a new entry - or people think it doesn't happen any more 😉
I hadn't really noticed you weren't around as there has been too much messing about with the platform in recent months - but now I realise, I do miss you!!!! Do post occasionally xxxx
EileenH
Posted
PS - forgot to say, snap!!! If I can keep the PMR under control the MPS isn't too bad and vice versa. Both are being a bit of a pain at present - pred rules!
jillian92038 tina-uk_cwall
Posted
Thank you Tina, very sound words of advice and very heartening to know that you managed to get to zero and are coping well.
Gives hope to us all. Well done and a Merry Christmas and Happy New Year to you and all. Jill.
celia14153 tina-uk_cwall
Posted
Thanks for sharing Tina. Have a lovely Cornish Christmas!
BettyE tina-uk_cwall
Posted
Interesting story and probably not entirely unfamiliar to some of us! One thing leads to another as they say and in my experience that's certainly the case with pain. Our bones hurt so we adjust our way of walking and tense our muscles to protect them and then our muscles object and in the end you're not sure which pain is which.
In most ways we are glad when we no longer have to take pred. With me that meant BP returned to normal and over the months my muscles became stronger and more responsive. Downside was that, as your GP said, the pains that had been masked ( OA ) have now returned, and, as pain killers and I don't get on well.... they make me fell sick, I'll just have to learn to live with them.
Best wishes and Happy Christmas. I fondly remember all our holidays in St. Ives in the sixties. Harmony cottage opposite the Methodist church who woke us on Easter morning with some rousing singing.
pam7653 tina-uk_cwall
Posted
TINA,
I've had PMR now for over 5 years. The last two years I've had numerous flares in my left hip, at times having to boost my PRED to 20 mg. My last visit to my RHUMY he ran a little blood work and called me on my 65 birthday to tell me I had RA, and to come in and learn how to take EMBREL or HUMIRA shots, no consultation at all . I was upset on his timing and soon decided to seek a different approach I found an INTEGRATIVE medicine doctor. I was put on a regiment of vitamins, my VIT B was drastically low. I then asked for an MRI of my hips, my main pain area. It showed little issues. I chatted with my ORTHOPEDIC doctor and he said it was my piriformis muscle and IT band which on some people can run through the piriformis muscle. He sent me to physical therapy but I opted for a chiropractor. He said my piriformis muscle was the size a softball, after exercises its less than a golf ball. Now I'm down to 13 mg from 20mg. My new doctor said my RHUMY didnt really run enough tests to confirm RA. I've basically been my own advocate for my health. Tired of them pushing the prescription drugs. Down deep I'm hoping this PMR is gone. Guess I'll wait and see. I've been using prednizone for this left hip for 2 years.
JUST CURIOUS! WHY IS TYPING ON THIS SITE NOW SO OLD SCHOOL? ITS LIKE TYPING ON A 90's CELL PHONE.
EileenH pam7653
Posted
I had a similar experience - not RA but claims my low back pain was "wear and tear", also with no detailed imaging. In fact it was also low back muscles including the piriformis. Muscles sorted - back pain sorted!! It seems a common thread.
pam7653
Posted
LET ME CORRECT . I MENTIONED IN MY LAST POST THE IT BAND CAN RUN THROUGH THE PURIFORMIS MUSCLE. IT IS THE SCIATIC, NOT THE IT . MY MISTAKE!
nick67069 tina-uk_cwall
Posted
Hi Tina, great news and very informative post. Naturally I have run into similar scenario with old sport injury ( knee) that got weaken due to PMR/Prednisone. Went to a doctor who took many xrays and came to conclusion that I need knee replacement on which I said " you must be a surgeon" 😃 ( wants to operate). My response was -not yet. Let's try therapy first. Although knee is still weaker then I would like it to be, therapy took care of pain.
As you pointed out, this only became a problem when my dose was low ( 3-4mg).
Merry Christmas and Happy New Year to you too!
ling42044 tina-uk_cwall
Posted
HI Tina
Your message give me hope that One day i will also be on 0 pred. For me , it has been a 5 and the half years journey on PMR. In the beginning, I was horrified to learn that PMR will take me so long to settle!! Anyway , with the ups and downs and flares and mistakes of dosage of Pred, i have finally accepted the fact that I have to be patient with PMR, and with my Dead slow method of reduction. Now I am on 10/9 mg of Pred, and am quite pain free.
Someone could enlighten me please on IV cortisone.I had a serious car accident in Italy near Naples. I was hospitalised for 13 days. During that time, the doctors gave me Cortisone IV 20mgs for 3 days, then 10mgs for the remaining days (I did not have enough oral Prednisolone with me !, and strange enough they refused to give me the oral Pred even after I recovered from the NIL By mouth first 2 days) . I read that IV cortisone is not the same as oral Pred, so I was quite anxious whether I would have flares etc... Anyway, I did not, but then I was receiving frequent pain relief , antibiotics etc. When i came back to UK, i went straight back to my 10mgs oral Pred, and so far it seemed ok. Any thoughts on IV Cortisone in such situation?? Being in a foreign country and not speaking Italian, everything had been a "not knowing " and frustrating experience.
Merry Christmas and Happy New Year to you All.
EileenH ling42044
Posted
Pred and hydrocortisone do, to all intents and purposes, the same thing - just you usually need a higher dose (in terms of numbers at least) to get the same effect. They are both corticosteroids but the effect of pred lasts much longer than that of HC, They probably used HC because they were also looking for cover for adrenal function after the stress of the accident and HC is usually the better for that. Having an accident (and I assume broken bones maybe?) can lead to excess gastric acid production in response to the stress so they would have been looking for all ways to reduce gastric irritation they could. I live in northern Italy - and they don't use prednisolone and prednisone is also not commonly used, they would probably have had the choice between HC and methyl prednisolone.
I'm surprised you didn't have them queuing to practice their English! We live in the German speaking north and speak fluent German but when we come up against doctors who only speak Italian (legally we are entitled to have German-speakers) we often end up speaking English at some level. Years ago I broke my leg in Italy and the 4 anaesthetists on duty spent the entire operation (done under spinal anaesthesia) practising their English! I never got to listen to my music CD!
ling42044 EileenH
Posted
Hi Eileen
As usual, you always come up with a brilliant reply !! Yes , I was injured with 9 fractured ribs , and sternum , ? bone infringement on my shoulder and neck area, plus a small pneumothorax !! (which did not need a drain!) I managed a few words in Italian, but on the whole a frustrating experience with lack of communication and explanation. Only one doctor managed to speak a few short phrases, but most of them and the nurses did not speak English! I used Google Translate a lot to communicate. I asked for oral Prednisolone instead of IV, but they just shrugged their shoulder !! I presumed the Cortisone IV they gave me were Hydrocortisone, I couldn't tell!
I am almost all mended now since the accident 2 + months ago, and i am now back to my Dead slow method for Pred. I just wondered whether the pain relief injections that I had at the time might have masked any PMR pain and discomfort ?
Thank you , Eileen.
EileenH ling42044
Posted
That sounds decidedly OUCH!!! You have recovered well.
I doubt whether even pain relief injections would have helped much with PMR, most people tell us that even heavy-duty opiods didn't help their PMR pain. Of course - not all the pain we experience with back muscles is directly PMR and sometimes other things help. High dosed i.v. NSAIDs helped the excruciating back pain I had earlier in the year - due to spasmed back muscles and really irritated the sacroiliac joints. I had infusions daily for over a week - it worked but I wouldn't choose them over a pred shot I can tell you!