Rheumatology appointment update

[Paulx222]

Hi All,

Hope you're all well/well as expected.

Just thought I would update on my situation as I saw Dr Cheung again today for a follow up.

Those who have been following will know I have had a few issues after having been diagnosed with PMR in December '23

I had to up my dose of prednisolone to 15mg for a couple of weeks as was struggling but am now back down to 12mg and doing OK.

Right shoulder pain on movement pretty bad but rest of me is doing OK but the biggest issue I have is fasciculations....or muscle twitching especially in my calves.

Having spoken to Dr Cheung today and having shown him my videos he has decided to send me for an EMG to chevk what is going on with my muscles.....

I mean.....I kind of knew this was coming as he said this wasn't a symptom of PMR. He did 'hope' it could be due to the steroids but he obviously wanted to rule everything else out.

I mean. You know......I'm stressed.....what can I say? But not much I can do......

I do have some of my famous questions though you'll all be pleased to know 🤣

So here goes......

1. My most recent bloods showed normal inflammation levels.....very low in fact (apparently), any idea why I would be experiencing pain still if that's the case?

2. White blood cells continue to rise.....Dr Cheung confirmed that this is due to the steroids. My GP is convinced there could be an underlying infection.....Dr Cheung was FUMING about this.....who is right?

3. Dr Cheung thought my continued range of movement issues could be a tendon issue but offered no tests to check.....should I ask for an MRI next time?

4. Dr C. was happy for me not to take my Andronic acid. He said that's up to me! Should I push for Dexa next time?

All in all.....I'm doing well on my PMR stiff but concerns regarding other potential issues are now usurping this a bit

Anyway, as I say. Thanks for all your support the last few months

Greatly appreciated x

[PMRpro Ambassador]

Not all pain is due to inflammation, even in PMR.

Your GP could be right, never say never - but the white cells are almost certainly high because of pred. It does that.

MRIs are not a universal answer. I'm sure Dr Cheung would have requested one if he thought it was going to provide him with any useful information.

I'd ask nicely - I wouldn't push though.

[Paulx222 in reply to PMRpro]

Thank you x

[Blearyeyed]

1. If you have been on steroids for a number of months you would hope to have low inflammatory markers because they were doing their job. Steroids treat inflammatory pain.If you are still experiencing pain this is probably neurological pain , and that's even more likely since you are experiencing other nerve based symptoms like the twitching and spasming.

Steroids don't usually make nerve pain better. Sometimes they can make it feel worse . It would be helpful to try paracetamol to see if you get relief, request a low dose nerve relaxant medication from your GP and try some gentle movement through the day to help.

2. Both! Dr.C is definitely right. Steroids can cause a rise in your white blood cell count particularly on higher doses at the beginning of treatment. But that doesn't rule out the possibility of an infection at the same time if you have other symptoms too , so your GP may just be covering all the bases in their thoughts.

3. Have you had X-rays yet for a tendon problem?

If Dr.C thinks you have a tendon or rotator issue and you haven't had x-rays you should probably query getting those as soon as possible. You may not need an MRI but you would probably benefit from an ultrasound , which could show the issue without the need for further tests or indicate that it would be wise to have the MRI.

So ask about X-rays and availability of an ultrasound (done by Specialist) first.

4. Your aren't taking AA , many of us don't need it when our risk assessment is low. You should still take Vitamin D and Calcium and try weight bearing movement and gentle walking within your comfort zone to help reduce your fracture risk or chance of bone density losses.

You may not need a Deca Scan yet. When you should have a DXA is also based on your age and fracture risk at the beginning of steroid treatment , over 75's and those with a higher risk of fractures because of osteoporosis or osteoarthritis may be offered one straight away or should request one so that they can be monitored regularly throughout their treatment.

It is the ideal to be able to get a DXA after three months on steroids if you are over 40 and have preexisting osteoporosis but this isn't always offered so may need requesting.

In Patients with a lower risk factor of bone related illnesses and no pre-existing bone health issues a Dexa Scan would be beneficial after a year.

So , really you can ask about DXA but it will depend on your individual circumstances if the doctor thinks it's advisable at the moment.

Hope that helps , Bee

[Paulx222 in reply to Blearyeyed]

Thank you for this

So in terms if neurological pain, what would we be looking at? Presumably an EMG would help diagnose?

Would PMR essentially be ruled out at this point?

[Blearyeyed in reply to Paulx222]

Neuropathy and Neurological Pain can happen for a very wide variety of reasons as a condition in its own right, or as part of another health problem or sometimes as a side effect of medications or reduced mobility and changes in posture caused by issues like PMR.The EMG is being requested to rule out the possibility that the twitching you are also experiencing isn't being caused by nerve damage or another nerve condition that would require different or specific treatment other than pain relief and physio.

If your EMG shows no significant nerve damage or neurological disorder then they are likely to diagnose neuropathy / nerve pain and give pain management or medication for that.

Have a kidney function and Diabetic blood test would also help rule out other causes of neuropathy or spasms which can happen from simple salt or sugar imbalance and may just require a change in diet and good hydration.

In the meantime , you could try the standard dose of paracetamol, gentle activity and heat pads. Or get an appointment with your GP and request to try a nerve pain medication like Pregabalin starting at a low dose used alongside the other self care methods above to treat the nerve pain.

Having a nerve issue or nerve pain condition would not rule out PMR , especially if you are already diagnosed with it and your Specialist is confident in that diagnosis.

You can have PMR and Nerve issues like Peripheral Neuropathy, Sciatica or Fibromyalgia, or other inflammatory problems like various types of arthritis at the same time as each other , each need to be treated appropriately to stop one causing additional flares in the other.

Many people on the forum , for example have PMR and Osteoarthritis, or PMR and Fibromyalgia. Many people suffer with flare ups of neuropathy or sciatica during their PMR.

Sometimes PMR or GCA can be the cause that triggered another condition , particularly a nerve problem to develop.

[Paulx222]

Thank you so much for your detailed response.

Absolute minefield. Just got lots running through my head again so very grateful for you helping me to understand what could potentially be going on. Of course in my mind I've got the worse case scenario running so goid to get a few less horrific but still quite nasty alternatives to chew on.

Thanks xx

[krillemy]

Hi - I have had and sometimes still have fasciculations. I also recorded a video as they look at me as if I was nuts, trying to explain. I have gone through EMG, etc., 2 times and a full MRI body scan. However, there are no signs of the dreaded ALS or myositis, for that matter, also it has settled.

I was (am!) young like you, and the neurologists said it was due to overexertion of the muscles. When the muscles are damaged and fatigued by inflammation (PMR) it causes them to be easily overstrained with physical activity, and then fasciculations come for some people. But it's good to have it checked! I still have PMR after 5 years, and if I do too much, they come back - By the why most of there other neuro diseases do not cause pain, just weakness at least in the beginning

[PMRpro Ambassador in reply to krillemy]

" the neurologists said it was due to overexertion of the muscles. When the muscles are damaged and fatigued by inflammation (PMR) it causes them to be easily overstrained with physical activity,"

Shame that neurologist's knowledge isn't shared with all doctors!!! Some look at you as if you are crackers but I've said this for years!

[Exflex]

When I was on 10mg or so, blood test showed anaemia and white cells were elevated. An appointment with haematology confirmed it was caused by steroids. As the dose reduced it recovered.

In hindsight I would always ask for a DEXA scan before taking a Bisphosphonate such as AA.

[AtopicGuy]

Twitches are so common, especially in people who aren't very mobile, the NHS advises you should only see a doctor if:

* you have a twitch for more than 2 weeks

* you have a twitch in more than 1 place

* the affected area feels weak or stiff

* you think a prescribed medicine might be causing your twitch

I've had EMG. I predicted it would be inconclusive at best, because my muscles are weak and sore, but nowhere near paralysed or spasmodic. Sure enough, the results were all "normal". Doctors have a quaint belief that technology can detect the tiniest things because they have no concept of what engineers call 'noise levels'.

I wrench a shoulder/arm/hand almost every day. I put this down to muscle loss destabilising the joint. I've been off prednisolone for 6 months - the longest period in over 3 years - and can't exercise, so muscle wasting is inevitable. I used to do lots of physical work. I keep my weight down to a normal BMI, but am now flabby, not 'hench'!

If your doctor suspects a neurological disease, the first thing he/she should do is test your tendon reflexes and have blood tests done for AChR and MuSK antibodies. They're much quicker and cheaper than EMG!

[Paulx222 in reply to AtopicGuy]

Thanks for this.

I was sent for bloods but unfortunately I didn't ask which ones I was being sent for.

The EMG has been requested so I suppose I should go through with it. My reflexes weren't tested

*They have been there since shortly starting Prednisolone along with hand tremors and just a general judderinness to my movement but are almost constant now and much worse. So longer than 2 weeks.

*Twitches focus on the calves mainly but are all over the body.

*No stiffness other than what I had initially when PMR was diagnosed. Stiffness these days seems to manifest in the hips rather than in the shoulders. I continue to have right shoulder pain on movement.

* I suspect the steroids but I'm aware it could be something else......hence the EMG I suppose.

Hoping for a normal EMG like yours 🙂

[krillemy in reply to Paulx222]

By the way. Some asthma medication like salbutamol will worsen or cause facilualtions -

[krillemy in reply to AtopicGuy]

So you are talking about Myasthenia Gravis? Relevent, I have been tested as well. Does not cause pain though say..

[AtopicGuy in reply to krillemy]

MG causes muscles not to contract properly. In itself, this does not cause pain. But continuing to use misfiring muscles, or being too weak or exhausted to be mobile, does. Most patients diagnosed with full-blown MG symptoms (and therefore unlikely to have been misdiagnosed) complain of pain and stiffness.

musculardystrophyuk.org/con...

[Nomebear]

I could have written this verbatim.

[Paulx222 in reply to Nomebear]

The original post or the replies?