New problem : I slipped on wet steps last Monday... - PMRGCAuk

PMRGCAuk

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New problem

Aqua47 profile image
51 Replies

I slipped on wet steps last Monday and broke my tailbone. I saw the orthopedic PA, and she advised me to stop prednisone for a few weeks. She said it could slow healing. I told her I couldn’t stop suddenly, so she said to check with my rheumatologist. He said to continue it. I am on 7 mg now, taking 2 about 10 pm, and 5 at 8 am with breakfast. My stomach couldn’t tolerate the 2 am time. I’ve been doing ok with this, only having pain in the palms of hands when I awake in the morning. This morning my arms and hands hurt until I took the 5 mg. Any suggestions?

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Aqua47 profile image
Aqua47
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51 Replies
SheffieldJane profile image
SheffieldJane

Your injury sounds so painful. I was horrified to hear that your doctor wanted you to stop Prednisone, that would be so dangerous regarding your adrenal function and you would suffer generalised pain. Do you have yoghurt or some kind of stomach protection with the 2 am dose? If not, that would help.

After such a traumatising injury I would double my Pred dose for about 10 days, observing the sick day rules. You must be quite shocked. This is explained further in FAQs on here. See if your Rheumatologist agrees. I hope you heal soon!

PMRpro profile image
PMRproAmbassador in reply toSheffieldJane

Not a doctor SJ - a PA, a physician's assistant. Usually a biomedical scientist graduate who does a further 2 year course to transform them into an assistant for doctors. It is a misleading title for a group of staff who, in the UK at least, are not yet answerable to a professional body to be able to work safely.

Aqua47 profile image
Aqua47 in reply toPMRpro

Thanks, I’m not sure how much to increase my dose. I was thinking about adding 5 mg after I woke up with pain in my arms this morning. But after reading both yours and SJ’s replies, maybe I’ll add 2 for a few days.

PMRpro profile image
PMRproAmbassador in reply toAqua47

See how it works - not sure that pred is going to help the real pain but it might help other bits.

The trouble with opiods is that the baby has been chucked out with the bathwater because of irresponsible use by too many doctors and there is no real answer for pain relief as a result.

SheffieldJane profile image
SheffieldJane in reply toPMRpro

Yes suddenly our Surgery has at least 2. I wasn’t sure about their qualifications. The one I saw confidently advised actions that would have far reaching effects and read portions of my notes from other GP consultations that did not tally with my memory of them.. It was quite upsetting. I bit over zealous I think.

PMRpro profile image
PMRproAmbassador in reply toSheffieldJane

"The one I saw confidently advised actions that would have far reaching effects " - in that case, keep an eye on them and report anything risky.

Aqua47 profile image
Aqua47 in reply toSheffieldJane

Thanks for your concern. You are right, it was very painful, and has not improved at all. I was told to take Tylenol, which has no effect on this pain. I tried to get an opioid pain reliever from both the ortho doctor and the rheumatologist. They would not give it to me they said because of strict regulations. Luckily I had some left over from a few years ago, which I was taking for knee replacement pain. If not, I would have had to go to the emergency room. This pain is worse than the knee replacement. I even have moments of nausea when I move around.

Afibflipper profile image
Afibflipper in reply toAqua47

Have you tried TENS (trans cutaneous nerve stimulator) machine - I have used them many times over the years for slipped discs/OA of spine. No drugs involved and provided it is positioned correctly (electrodes) it stimulates the nerves & as it’s level is increased it lessens the pain. You could ask your Dr/pharmacist/consultant/physiotherapist for advice - hope you improve soon

PMRpro profile image
PMRproAmbassador in reply toAfibflipper

You have afib - have you discussed the use of TENS with your cardiologist?

PMRpro profile image
PMRproAmbassador

I have just read an article on my FB feed about the use of PAs in the NHS and your story illustrates exactly the problem with them being allowed too much leeway. They should be under the supervision of a doctor - at least this one was and you knew enough to challenge her. Many patients are not nor are they aware of the limitations of a PA training. She could have made someone very sick, even caused an adrenal crisis which can be life-threatening. The supervising orthopedist needs to be made aware.

I suspect either the trauma of the fall has triggered a flare or your adrenal function is struggling with the effects. Either way, a bit more pred for the evening dose might help. Not sure I would go to Sick Day Rules now, try 1 or 2mg more first.

Bramble2000 profile image
Bramble2000 in reply toPMRpro

The PA issue in the UK is a nightmare and needs addressing (getting rid of, in my opinion), urgently.

pmac22 profile image
pmac22 in reply toPMRpro

It has been a problem in the US also. I think for general medicine they can be very helpful but the one in the ER let me go into Adrenal Crisis.

Peggy

PMRpro profile image
PMRproAmbassador in reply topmac22

Which shows they DON'T have the same level of expertise as a junior doctor. Even I know more than some of them appear to!!!

Bcol profile image
Bcol in reply toPMRpro

Suspect that you know a lot more than most of them!!!

PMRpro profile image
PMRproAmbassador in reply toBcol

I do have the biomedical degree!!! But how can a 2 year foundation degree get them to the level of a junior doctor which one course was told by their course leader was the level they would qualify as? To do her job in the ED, my daughter had the biomedical degree plus a 2 year foundation degree as a paramedic and a 4 years Masters degree course during which time she was working as a paramedic and then emergency practioner - 10 years of experience. And she still worries about missing things!

Bcol profile image
Bcol in reply toPMRpro

It's happened in schools and the police, although hopefully without the possible deadly consequences. When TA's were brought into schools the unions, who said they would be cut price teachers, were assured that they would never be allowed to teach classes on their own, that went out of the window after a few years and I guess it's the same with PCSO's in the police force. Reducing standards to save money has a knock on effect through society.

pmac22 profile image
pmac22 in reply toPMRpro

And that was after I told him I was steroid dependent! I had to keep demanding a Doctor. Finally got one but it was too late I ended up crashing from low BP it was awful. It seems in the US every specialist has PA’s now or NP (nurse practitioner) NP are much better.

PMRpro profile image
PMRproAmbassador in reply topmac22

NPs have been around a lot longer and have far more practical experience - that is what concerns me most. And the title - PA, physician associate, makes them sound more qualified than they are.

powerwalk profile image
powerwalk

Oh my sympathy, i broke my coccyx last September, nine weeks after lumbar surgery. Its extremely painful and takes a long time to heal but does ease out as time goes on. I was given a prescription for Solpadol, which was very helpful. Have you gotten a special cushion? It will save your life. NOT the doughnut ones. If you can get the foam ones that have the back piece cut out, even now i bring it with me in the car or wherever i go. Coccyx cushion. I got mine from a back supply store. You could get one online if you can. I hope you feel better soon. Best wishes.

Aqua47 profile image
Aqua47 in reply topowerwalk

You are so right about the pain. I’m in the eighth day and it doesn’t seem to be letting up. I got the donut pillow, but it gives little comfort. I’ve considered cutting a section out on the back, which would make it similar to the one you mentioned. I’m not familiar with that medicine. How long was it before your pain started easing? Was you injury caused by a fall or something to do with your lumbar surgery?

PMRpro profile image
PMRproAmbassador in reply toAqua47

Solpadol is cocodamol - mix of codeine and paracetamol.

Aqua47 profile image
Aqua47 in reply toPMRpro

That is what I have been taking that I had from knee surgery. .It’s called hydrocodone in the US. Mine is 5 mg codeine and 325 mg of acetaminophen. I’ve also added 500mg of the acetaminophen to that pill.

HeronNS profile image
HeronNS in reply toAqua47

I think that's similar to Tylenol 1, although the version I get (not Tylenol brand) has 8 mg codeine with the standard acetaminophen tablet dose and some caffeine. You can get it over the counter but in recent years they keep a record of your purchases. I got an overly generous supply of Tylenol 3 for my broken wrist (very much needed but happily only for a few days) and expect to cut the leftovers in half or even in quarters for occasional use when needed, may last me the rest of my life, or at least until it expires. Seriously, most people can be trusted not to abuse a medication like Tylenol 3 or Co-codamol so it seems cruel not to provide it when it's really necessary.

Bcol profile image
Bcol in reply toAqua47

Tylenol 4 I think is the US version of the 30/500 Co-Codamol only available on prescription here.

PMRpro profile image
PMRproAmbassador in reply toAqua47

Careful about adding acetaminophen/paracetamol to it if you come anywhere near the daily limit of acetaminophen it can be very bad for your liver. It comes in 3 versions, same paracetamol dose and varying codeine amounts up to 30mg codeine which is very effective.

Aqua47 profile image
Aqua47 in reply toPMRpro

I’m trying not to go over 3000 mg of acetaminophen. I think the warning for liver damage is over 4000. But you never know! I have never heard of anyone taking 30 mg of codeine. 10 is the most I’ve heard of anyone taking. I’m sure the doctors I see would have a fit if I asked for that dosage! I was told by my GP several years ago that the practice could not prescribe hydrocodone and Xanax at the same time. I take 25 mg. Of Xanax at night for sleep, and since this injury I’m taking .50 mg.

PMRpro profile image
PMRproAmbassador in reply toAqua47

My daughter needed the 30/500 strength for pain relief. It is only ever available on prescription but is VERY effective, The risk with paracetamol alone is that patients think it is safe as it is OTC - overdosing on it is a horrible way to die.

nhs.uk/medicines/co-codamol...

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toPMRpro

Me too for a few months before my knee replacement in 2018 - luckily never need it since.

Nonameme profile image
Nonameme in reply toPMRpro

Hi Is it possible to become immune to Co-Codomol 30/500. I have been on this for years following back problems. I take 2 tablets twice a day every day but very occasionally will take a full daily dose of 2four times a day. I have never felt they are terribly effective and have been able to go without for many days. Once forgotten on a 4 week holiday. I do not appear to have an addictive personality as I was also able to stop both Buprenorphine patches and Lanzanapole instantly with no side effects. I was once on a sleep tablet which suggested very slow withdrawal but when I told my GP I only took them a few days at a time she swiped them off my repeat immediately.

My GPsare always remarking that I am on a lot of meds already and they cannot change or prescribe more but I wonder if this is more about them being ineffective on me than most. I take 2x Metformin daily 1 Lisinopril twice daily and 1Rosicvastatin daily. which I do not consider ‘tons’ of medications.

Sorry to hijack thread but it peaked my interest.

PMRpro profile image
PMRproAmbassador in reply toNonameme

Yes

"If you need to take co-codamol for a long time, your body can become tolerant to the codeine in it. That means you need higher doses to control your pain over time."

nhs.uk/medicines/co-codamol....

No, I wouldn't consider that "a lot" - they are for different things so if you developed another illness would they refuse to prescribe for you? You are only on metformin - many diabetics are on more than one drug to manage their blood sugars.

However, it is becoming clear that pain medications are a problem - no really effective and, above all, safe ones. Ironically, taking pain medications can result in increased pain perception so you are worse off. Where I live in northern Italy they still aim to deal with the underlying cause (for me at least), using techniques that the English-speaking medical world have dismissed as unscientific. Unscientific they may be - but they have been effective and have no adverse effects because drugs aren't always required.

Nonameme profile image
Nonameme in reply toPMRpro

Thank you so much I was beginning to think it was as they have said ‘all in my head’. I would love to try ‘other’ methods I am open to anything. I have for now given up on NHS as I live on an off shore island. so extremely limited on NHS anything one small hospital so even if you pay you see same doctor and end up on same waiting list. Most GPs have some roll at the hospital so a very tight knit society. I have at least 3 separate back conditions all diagnosed, but am now effectively without pain control yet am still a full time carer for my sister and we have no help whatsoever with anything physical or otherwise and last week physio told me I was not doing enough exercise how I did not lash out I do not know. I mentioned problems with T 3/4 and t9 and she said yes all upper back same area showing lack of exercise in legs. so vertebrae do not go numerically? or have I lost 5,6,7,8! Gave me a sheet of exercises to do at the kitchen sink! Any way thanks again I will have to approach from a different angle if I ever visit GP again.

PMRpro profile image
PMRproAmbassador in reply toNonameme

Sounds a very strange comment to me!!

powerwalk profile image
powerwalk in reply toAqua47

I fell on the wooden floor. Nothing to do with the back issue. Yes the donut ones your sore part really isnt in the right spot, i had tried one before i saw the other ones, makes all the difference to the pressure. Honestly, it took a long time, so dont be disappointed when you ferl its not getting better. Im eight months on and still would think before i sit. But nothing like the first couple of months. It seems to be one if those injuries that wont be rushed. If its not improving maybe get it checked again, but like ribs, its a waiting game. But you will improve, so dont think you wont. If you could get some kind of pain relief for couple of weeks it would get you over the rough part but obviously with your doctor's input. It doesnt have to be top shelf stuff!! Let us know how you get on. You will feel better!!

piglette profile image
piglette

There has been several articles about PAs in the BMJ (British Medical Journal) commenting on patients thinking they are qualified like doctors and some of the errors they have been making.

Swizzly profile image
Swizzly

I had an accident and broke my ankle and tailbone in May this year. The foot had to be operated. I was on 17.5 Pred then and today on 10 mg. Everything has healed well. I didn‘t had to stop Pred. But as i read here everything is a bit different from UK to Switzerland.

HeronNS profile image
HeronNS in reply toSwizzly

But in this case it seems the medical person was only thinking of pred's (potential) slight effect of slowing down healing from an injury, not on any of the reasons why the patient was on pred and what would happen if it was arbitrarily stopped. Surely that wouldn't be standard practice anywhere?

Swizzly profile image
Swizzly in reply toHeronNS

I have told the doctors several times that I have PMR and need to take the Pred. They also contacted my rheumy to determine the dose. The care at the hospital was very good. I took Pred with me myself.

Bramble2000 profile image
Bramble2000

The PA is wrong.

Pixix profile image
Pixix

I broke my tailbone falling backwards off our rockery two months ago. I couldn’t sit down for weeks and bought a special cushion which helped! But it went on so long that my Doctor injected steroids into it to help. I didn’t increase or decrease my steroids during the period. It does rage a very long time to heal! Good luck!

Aqua47 profile image
Aqua47 in reply toPixix

I am having more pain for the past 2 days than I did the first few days. It has become impossible to get comfortable. I’ve tried all kinds of pillows. I’m thinking of asking for injections also. The doctor who gave me 3 epidurals and an ablation for my back did a really good job for that problem. How long after your injury did you have an injection and did it relieve most of the pain?

Pixix profile image
Pixix in reply toAqua47

Not until four weeks after as a lot of them resolve themselves in that time. But you need to get a special shaped cushion with a gap at the back so your tailbone isn’t sitting on the cushion. They are cheap and available online at the usual online places! They do work! I fell backwards and downwards from a height I guess about 3-4 feet, and my ankle went at same time! I have hypermobility and orthostatic hypotension and fall quite a bit. The injection wasn’t an immediate success where I went from dreadful pain to no pain! It helped after a while. The Dr needs to be skilled to get the right spot, I had to lay face down on the couch and very still. He then put on a large dressing which has to be on fur three days and without too much info it’s in a very difficult place!!! Buying the cushion is the first priority, I suggest! Then see if the pain eases after using it for a while. I was reluctant to have the injection as I have bad osteo arthritis and can only have a certain number of steroid injections each year, and like to save them to relieve pain in hands and feet…oh and to help my hip.. I have trochanteric bursitis!! Good luck!

79andCounting profile image
79andCounting

That PA needs to go back to school! It's dangerous to just suddenly stop Prednisone!

PMRCanada profile image
PMRCanada

Taking your dose around 2am could help, but if your stomach can’t handle this you could take coated pred tablets at around 11pm and the medication will be onboard in a few hours. Or, if no enteric coated pred is available where you are, you could purchase empty acid resistant capsules and stuff uncoated pred tablets into them. That’s what I do and take that part of my split dose at 11pm (as I found getting up at 2am problematic). Works well as it is processed lower in your GI system, and addresses morning stiffness.

As others have mentioned, you may need to temporarily increase your pred dose due to your injury.

All the best.

Aqua47 profile image
Aqua47 in reply toPMRCanada

I didn’t know you could buy such capsules. I had tried the 2 am dose, but it was a problem to me also. My stomach was giving me problems, and if I ate or drank something with the pred, I sometimes had trouble going back to sleep. It really does help the PMR to take it at 2 am. Thank you and I will order the capsules.

PMRCanada profile image
PMRCanada in reply toAqua47

I purchase my empty acid resistant capsules from a manufacturer in the USA called “Capsuline”…..just ensure you are getting the ones that are “acid resistant”.

tangocharlie profile image
tangocharlie

Ouch, that must be painful. That advice seems a bit odd to me, I wonder why they said to stop steroids? I've recently gone through excruciating spinal fractures and although the steroids can't do anything for the bone mending I'm sure they helped with the inflammation, which was already bad from PMR but made worse by the trauma causing further inflammation in the surrounding muscles and tendons. Perhaps they are worried that steroids slow down bone repair as they slow down the absorbsion of calcium, but you have to weigh that up with managing your existing PMR condition.

Aqua47 profile image
Aqua47 in reply totangocharlie

It was the PA who advised me to stop prednisone. She said it could slow healing. Being around 25 years old, obviously she doesn’t know anything about PMR and being on prednisone long term.

PMRpro profile image
PMRproAmbassador in reply toAqua47

But in her role - if nothing else she should know about long term steroid patients and not stopping it suddenly.

Aqua47 profile image
Aqua47 in reply toPMRpro

I agree. I used to think a PA had to consult the dr they were working under to recommend treatment. But I realized over the years they work on their own. You wonder how they can be trusted.

PMRpro profile image
PMRproAmbassador in reply toAqua47

I don't think they can prescribe and need a doctor for that - in the UK at least. I think the problem really arises when they aren't as aware of their limitations as they should be. Plus, cases are assigned to them that maybe shouldn't be. And in the US - what coding is used for reimbursement of fees? Do they charge the same for seeing a PA as seeing the doctor?

Aqua47 profile image
Aqua47 in reply toPMRpro

I don’t think I have ever known a PA to consult with the doctor they were working under for approval. They usually come in, ask what the problem is, and prescribe something. I think their charges are the same. My insurance pays, and I just have a copay for specialists.

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