independent.co.uk/voices/op...
Something I've ranted about for years - but how many of the elderly patients sitting dazed in a corner she talks about would be fine given 15mg pred?
And I wonder what her "inflammatory marker" was due to?
I wonder how many opiod scripts could be replaced... - PMRGCAuk
I wonder how many opiod scripts could be replaced with steroids?
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True even here.
On my long and winding road to PMR diagnosis I was prescribed Ixprim, small dose tramadol and paracetamol-- tried for 2 days-- didn't work, tramadol 50mg---Tried for 2 days-- didn't work, tramodol 100mg--- tried one tab--didn't work, finally 2x100mg twice daily, unsurprisingly that didn't work as I gave up tramadol after taking one 100mg tab once. I have a pill cabinet full.
I am sure that this links to a recent post about taking elderly females seriously. Pretty well all my symptoms seem to have been dismissed as being the result of bereavement, where being numb and dazed in a corner was thought to be an appropriate place.
Very interesting reading. My GP gave me a prescription for Tramadol last week following a flare up of Fibromyalgia. I am currently on 10 mg steroids for PMR and GCA. I have taken the Tramadol for 2 days and today feel so unwell - dizzy and vomiting. I guess I won't be taking them any longer.
Sure you're right PMR pro. Pred. must be the last line of doc.prescription. Some fear there! Yet they dish out far worse! Personal pain management has to be best if possible! Not sure what JSP. is targeting but always admire a free spirit. Amazing she does't have jaw ache!!!
CelticPMRGCAuk volunteer
Doesn't it all boil down to the need for more doctors to RECOGNISE the possibility of PMR in the first place.....and then HAVE THE AWARENESS that a short trial dose of steroids may give them the answer....and get those poor "elderly patients sitting dazed in a corner" out of that corner and out of such pain?! Certainly, the first 4 doctors I saw hadn't got a clue, nor the rheumatologist! They may fear giving steroids but certainly my experience with Tramadol in the undiagnosed days was not one I want to experience again - dizzy and spaced out after the first dose! Thank Heavens for steroids.
I was in so much pain, the hips so bad I didn’t want to sit on the toilet seat or get up from my favorite chair. BP was sky high & I called a cab to take me to the ER. He didn’t help me get out (2:30 am) of course & the hardest thing I had to do was get out & walk to the ER door. The ER for the 1st time (to my acknowledgment) measured my CRP etc.. they referred me to my PC. After 2 jumbo Advil or whatever & the next morning later, I rallied & walked to the Train to get myself home. The beginning of the END. I HOPE!!!
Advil helped? Are they SURE it is PMR?
Snap! with “sky-high BP” and the toilet issue - until social services arrived with a raised toilet seat, it was a standing job!
Are you still on Advil, Cassie? Or has PMR been confirmed and the Advil changed to steroids? It is most unusual for Advil to relieve the pain of PMR. At least, under the name Ibuprofen it did nothing for me. If you are still on it, then do be careful - it can lead to kidney failure taken long term.
I’m not allowed to take Advil or any ibuprofen. With the Pred.
A relief to hear that, Cassie, and I hope your PMR is behaving on Pred.
Thanks. Working on it. 4.5 mg now. Spent the night at the ER. Then (oct. 2016) I don’t know if they gave me anything else, but it was 2 BIG Pills. My CRP was super high!
Wow! You have done well to be at 4.5mg after 18 months. Is your CRP in the normal range now? Having said that, it can sometimes lag behind the true picture, so I think you would be wise to go really slowly with your future reductions. PMR can be expected to take two years upwards to go into remission (it took me 5+) and it isn’t uncommon for those who get off steroids under that time to have a relapse. However, hopefully you will be one of the lucky ones with a textbook recovery and that would be wonderful. Do keep in touch and let us know how you get on.
My Rheumy had me all the way down to 2 and I spent a second miserable Christmas. The Doctor upped me to 3 and when I still complained she finally upped me to 5. I got some relief. In late January I read Kate’s book and subsequently joined this Forum and when I was told to go to 4 I just ignored that. I stayed on 5 till I felt really good & then started the DSNS plan. I go in this week (with a copy of the book for her). She never explained a “flare”. That was a new word for me. I just thot I was supposed to suffer. I’ve learned so much here. My CRP & sed rate responded immediately. Best ever December ‘16 and I was sleeping in a chair for 2 weeks I struggled so much. Those lab tests don’t do us any favors when they’re normal.
Cassie, it’s so frustrating reading such stories. If a Dr has a patient who is suffering so in spite of following his/her advice, it is surely that Dr’s responsibility to investigate the diagnosis further, ie look into the latest Guidelines, learn and help the patient out of pain. Glad you’ve finally had some improvement......all thanks to Kate’s book and the forum!
I know! When they would say “it’s the joints” (my PC) I’d ask for a Pain Clinic so I got an Ortho “pain specialist”. They just want to operate and I’m sure if I’d pursued it further (pain clinic in a different setting) I would have been put on opioids. I’m grateful that didn’t happen and the suffering was worth that, but a higher dose of Prednisone would have been lovely.
Horrid to go through suffering that is totally unnecessary. It would be nice to think that such doctor’s at least eventually learn from their patient’s unnecessary experience! Although my year of non-diagnosis was a nightmare, I was lucky in one sense, because one GP who thought my pain and immobility was due to my spine slippage (spondylolisthesis), referred me to an orthopaedic specialist. He, in turn, decided that spinal fusion was the only path to go down but following the X-rays revealing the amount of slippage etc. made an about-turn decision and said he decided against surgery as he thought there could be something else also going on and referred me to a rheumatologist. He proved rubbish, but thank goodness at least for the knowledgeable ortho chap - dread to think what state surgery would have left me in when the cause was PMR and GCA all along!
Wow! So I didn’t suffer alone, but how tragic for you. Lovely that you unselfishly can help others now.
Cassie, unfortunately, it happens all too often it seems so we certainly aren’t alone in such experiences. Having said that, there are some excellent medics out there, and good to sing their praises when we encounter them. In fact, the lovely members here have probably got bored with hearing me sing the praises of rheumatologist, Dr Rod Hughes!
We’ll see how good mine is after I present her with Kate’s book tomorrow. I think she’s open-minded and I can understand why they don’t answer any of our questions. They can’t. They’re trained to go by facts and proven studies and beside dealing with mystery disorders they have subjects who are all different and present with different symptoms. So glad we have each other to keep on track.
Yes, they are 'only' General Practitioners after all and we can't expect them to know everything! However, if they find it impossible to give an answer to someone's severe pain, I don't think it is too much to expect them to refer that person higher. Problem is if they are being advised not to refer to consultants unless absolutely necessary, it seems their hands are somewhat tied! Good luck with your appointment tomorrow.
Mercifully here where I live the aim in pain management is to first identify where it comes from - and deal with that. It took the pain clinic magician about 3 minutes to see my entire back musculature was as hard as boards! She worked on releasing the spasms - and I have had about 5 years relative peace. Been bad again recently - but the physio who has been doing therapeutic massage to release the spasms this time keeps saying "this is what happens in PMR"...
Thanks. I’ll remember that & find a new physio. My spasms were so bad she just looked at me & said she couldn’t touch me until I had a new X-ray to indicate I hadn’t any new fractures. Here they usually stress mostly “core”.
In OZ they have now restricted anything with codeine to prescription only after concerns too many people were becoming dependent on or 'addicted' to them. And yes PMRpro I reckon you make a very good point if only Pred wasn't so 'demonised' ...
After a long summer of undiagnosed pmr misery, i developed a chest infection and was prescribed Prednisone for 2weeks.
The 2nd day using prednisone was amazing...pain was gone!
Feeling fantastic, I Finished the 2 week run of pred, and within 3days, the hideous pain returned!
My friend was visiting when I realized that pain had returned after the prednisone, and commented...”if the prednisone helped your pain...it must be caused by inflammation.” What a concept!
Off to my GP, to ask for prednisone, because it helped the pain. She laughed and said “ you cant take the prednisone for the rest of your life, but maybe you have PMR.
Ultimately she referred to me to a rheumy, who confirmed PMR.
After chiding me...”it makes you gain weight”...rheumy prescribed pred.
Both she and I went on to learn a whole lot about prednisone...one thing being that it does not cause you to gain weight...what you put in your mouth causes it.
Long story...prednisone is remarkable treatment that brings some challenges. But!!!, it does not leave me sit dazed, drooling in the corner!
I have gotten out of the corner...nearly 5 years on Prednisone, 2 mg now.
Great food for thought!!
As always, kind regards, Jerri
I am sure there are quite a few older people with PMR undiagnosed and it is just assumed to be old age aches and pains by the doctors. In some ways I can understand the doctors doling out drugs as it is so much easier than talking to the patient to find out what is actually wrong, particularly as they probably have more than one problem anyway. Saying that I don’t condone it.
Given the comorbidities that surely should dissuade them from prescribing heavy duty pain control and the relative safety of pred in patients on BP meds and very often warfarin and co - I'll take pred over opiods to reduce the risk of falls any day...
Many years ago, when 1 long-standing ..pun! leg ulcer wouldn't heal, and the pain increasing, I was prescribed Tramodol. After just 1 tablet, I was walking on the ceiling. After the second, and last, I was imagining all kinds of things. I always think of the waste there is. Why don't gp's prescribe small amounts and see if it's agreeable, with the patient?Needless to say, I have Tramodol listed with Medic-Alert. Yes, 12 years on, still taking Pred, and no complaints.......
Hi I know steroids are the “ wonder” drug for us lupus sufferers. But the devil is in the detail the side effects can have long term effects on your quality of life including loss of bone density, brittle bones- osteoporosis, raised intraocular pressure, blindness. I always take steroids as a last resort. I know when I am struggling with pain etc it is hard but at least I can see the beauty around us. It really comes down to a question balancing our needs. I know we are all stuck between a rock and a hard place. Wishing you all limited need for steroids
Dear josiewolf, for anyone with PMR steroids are the only drug that works, so we do have much choice. If I did not have them I would be bed bound, before diagnosis I could not get dressed, I could not leave the house, I could not drive.... Within twenty four hours of taking them I was getting back to being a normal human being again. There are several drugs available for lupus so if you are not happy with steroids you can at least try other things. A friend of mine with lupus has never taken steroids at all.
I wasn’t having a go I have been just as bad as you and felt like Wonder Woman on steroids and yes I really needed them . I was just pointing out that they should be a last resort and quite rightly there are other drugs. I take three grams of mycophenolate a day along with 22 other types of medication. But I would still say to everyone please take them as a last resort because of the side effects. In no way was I trying to insult you. I’m sorry if that is what you thought. Keep well.
Dear Josiewolf, this is the PMR/GCA discussions and what I am saying is that steroids are the ONLY resort. We really have no choice. We have a life full of pain without steroids with the added possibility of catching GCA and going blind. There really is no option but to take steroids. It is not the last resort but the only resort.
They ARE the only resort for PMR and GCA - that is what piglette is saying. God knows, none of us WANT to be on steroids - but for PMR it is the only option, for GCA it is the first stop as they are the only thing that has any hope of preventing irreversible loss of vision providing they are used quickly enough. Later you can add in Actemra if you are in the right country which reduces the amount of pred needed.
It wasn’t an argument just my opinion both as a patient and former ophthalmic nurse practitioner. Having nursed patients who regret having the steroids that cost them their sight.I am never free from pain and really do struggle everyday. So please don’t assume I don’t know about last resorts.
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