PMR Flare

[Waverley63]

Good Morning

I had a stressful situation 2 weeks ago and I felt a flare up coming, I was on 9mg and increased to 15mg on the 6th Oct, My symptoms seem to be getting worse instead of better, I’ve got muscle ache up and down my legs and arms and back and have as I call it a dead arm and a tightness in my left cheek. At first I thought could I be catching a cold but that doesn’t seem to be happening. It’s only since yesterday that symptoms have started to get really bad. Before I call the doctor should I increase again, I didn’t take a covid test as I don’t feel as if I have covid. I’m stillnn be in 15mg 2nd week now.

[DorsetLady PMRGCAuk volunteer]

Hi,

Sorry to hear this, and although you are only just into second week if things are deteriorating rather than improving on the extra dosage then you really do need to speak to doctor and not increase any more with their input.

Why do you think it isn’t covid? Might be worth checking…

[Waverley63 in reply to DorsetLady]

I just did a test to make sure and it was negative, I’ll call the doctors today to get an appointment, I feel sometimes the weather affects me as well.

[DorsetLady PMRGCAuk volunteer in reply to Waverley63]

Okay…. And yes agree weather doesn’t help but not to the degree you are describing, that sound like more going on. Please let us know how things progress.

[Waverley63 in reply to DorsetLady]

I’m in A&E now at doctors request will keep u updated thanks.

[DorsetLady PMRGCAuk volunteer in reply to Waverley63]

Good… well not good that you needed to go to A&E - but you know what I mean… 🌸

[PMRpro Ambassador]

If your symptoms are still getting worse after 9 days of a 6mg increase I think you really need some medical advice - it may be a flare, or your PMR has progressed, but it doesn't sound like the sort of minor flare stress or overreducing tends to cause.

As DL says - do tell us what transpires.

[Waverley63 in reply to PMRpro]

Thanks, they’re refering me to a Rhuemi and also to see the mini strike specialist as well to get checked. Fingers crossed I think it’s all stress related as it can do terrible things to the body, I feel my body is fighting off an infection of some sorts, but I’ll have to wait for the specialist to find out. Thanks to you all for the help and advice.

[PMRpro Ambassador in reply to Waverley63]

And in the short term?

[Waverley63 in reply to PMRpro]

I’ll speak to my doctor tomorrow again to see what he says .

[PMRpro Ambassador in reply to Waverley63]

Atopicguy mentions you having had an x-ray report of a wedge fracture some months ago - was anything ever done to follow that up? That is also known as a compression fracture, it is one type. After I was found to possibly have one, my rheumy insisted on a bisphosphonate infusion and since then my back pain has improved steadily.

[Waverley63 in reply to PMRpro]

My back pain has improved with acupuncture, I’m waiting on a scan now to see if I have had a mini stroke, but looking at the more extreme side effects are pain in the arm and leg and twitching in the face, so the wait is on. Tomorrow I have a call. with the doctor who diagnosed me she is a partner in the surgery so very good, I’ll keep u updated. Thanks for the support

[Waverley63 in reply to PMRpro]

Hi

Update on my symptoms, God this illness does make you feel alone. Well as posted I went to A&E at doctors request to check if I had a mini stroke, they referred me to the stroke unit and told me not to drive so I didn’t for a week. They also referred me to see a Rheumi but that could take months. So after a week I called the strike unit to see about my appointment only to I be told that the consultant who didn’t see me said it was my PMR and I didn’t need a scan, I asked them why this info wasn’t passed onto me as I’m waiting at home on an appointment. So I went back to the doctors on the 18th to ask what I should do as I have this constant pain in my left thigh (not siactica pain) more a burning pain and my heavy left arm pain and also new throbbing little pains in my ankles and arms and glutes. I can walk ok and get up and am back at work again but come the afternoon I’m exhausted. The doctor was very young and offered me codeine, I said needn’t hep so should I up my steroids for a few weeks to see if the pains go away, basically start over, she said I should wait for my Rheuma appointment and I said that could be 6-12 months so what should I do, well basically it’s up to me. The next day I got a txt from my Orginal doctor to say she’d phone on the 22nd to discuss my pains, I’m still waiting on that call.

So the question is do I just start over, it’s almost a year since I first got PMR, do I go back to 15mg for 2 weeks solid to see if the pains go away and then if they don’t go back to the doctor’s again. It’s exhausting daily having to cope with this hidden pain.

Any advise appreciated.

[PMRpro Ambassador in reply to Waverley63]

Well I would dispute it was PMR - none of what you describe is really typical of PMR, and some of it is unilateral, PMR is typically bilateral and fairly balanced.

The fatigue, especially if you are back at work, is typical enough. It is part of all autoimmune disease and can only be managed by pacing. The burning pain in your left thigh - where exactly is it? I have greater trochanteric pain syndrome - that is the new fancier all-encompassing term for trochanteric bursitis. It isn't like sciatica, so that could be a possibility and IS related to PMR.

It is appalling that they refuse to even see a patient before refusing a scan. And codeine is just "masking" any pain if it even works while causing other problems. If it were me. I would turn up at the practice in person and remind them I am waiting for care. And if it were me and had the pred to do it, I would experiment and try starting again.

[Waverley63 in reply to PMRpro]

I’m starting again from today at 25 mg but that doesn’t even touch my leg pain, just reading up now on trochanteric bursitis that sounds like what I have. Thanks so much for the help.

[PMRpro Ambassador in reply to Waverley63]

If it is, then oral pred really isn't the best way to go about managing it as you need a lot to get it under control. Some doctors will give steroid injections, here one of the rehab doctors has been setting his aim at extracorporeal shockwave treatment. I've had it 3 times now. The first time was great, the second time it was spread over a longer period which was less successful, and the third time was so-so but better than the second time. It is still there though and I shall ask at my rheumy appointment in a couple of weeks since the rehab guy is about to retire. There are also stretching exercises which he was insistent were integral to the success of the ECSW therapy. They do help on their own though. I find the clamshell particularly effective.

myhealth.alberta.ca/Health/...

[Waverley63 in reply to PMRpro]

I’ll have a look tonight and start the exercise and will hopefully get a call back from the doctor next eeek, I’ll bring it up, it’s funny as when this started I just returned from Poland and we walked nearly 26,000 steps over 4 days and they say that can be a factor as well, I’ll keep u updated that’s so much.

[PMRpro Ambassador in reply to Waverley63]

Walking further than usual does tend to wake up mine too, Rest is a recommended approach but when PMR is "feeding" the inflammation that is a double whammy and while rest may stop it being so sore, it won't cure it.

[Waverley63 in reply to PMRpro]

Update on my symptoms of pain in left leg and arms. Well 2 weeks on and I’m no different, I’ve still got pain in my upper thigh a stretching burning pain and my left arm these pains are 24/7. I also get small pains in my ankles and knees on both sides but these are not always there. I went to see a doctor at Neuorlgy and he said that my reflexes where good and basically wasn’t anything to do with neurology but may be a tick bite, so back to square one. I’ve had my bloods done again on Monday and my white blood Neutrophil Count is very high 15.4. Still in pain and exhausted. So they think that’s because I’ve upped the pred for 2 weeks but I’m back down to 10mg again. I’ve got to reset my test next week to see if this blood count is still high. So I’m still in pain and got the numbness in my left cheek as well. But I don’t think they have a clue as I keep telling them it’s one sided. I’ll let you know what happens next week after my phone call on Wednesday with the doctor. They did say if I get sick or get a cough to go straight to A&E.

[PMRpro Ambassador in reply to Waverley63]

How very strange. Sorry not clear - they think the raised neutrophils or the pain and exhaustion are due to the increased pred? I do hope they come up with something - anything is better than not knowing!!!

[Waverley63 in reply to PMRpro]

Yes I don’t think they have a clue, they’re going to try and express me to a Rheumy and if not I’ll have to look at going private in the new year.

[PMRpro Ambassador in reply to Waverley63]

Is this your GPs? If so, sounds as if they aren't as aware of their limitations as they might be!!!

[Waverley63 in reply to PMRpro]

I know it’s wuite a new young doctor and I feel at least he’s trying hard to find out what’s going on, he needs to run everything past his superior.

[PMRpro Ambassador in reply to Waverley63]

SHould be running "refer urgently" past them! If not "refer as emergency" ...

[piglette]

I do hope A&E help.

[Waverley63 in reply to piglette]

Thanks Piglette, it’s not a very nice place to spend 6 hours in, them poor staff.

[AtopicGuy]

In a previous post, 8 months ago, you wrote, "I’ve got a constant pain in my back which is affecting my left arm, I have a feeling of a dead dull arm and pain in my left bum. I was sent for an X-ray which showed the following. Findings: There is mild loss of height anteriorly of T7 in keeping with wedge fracture. The pain in my back, left are and leg is constantly there even with the steroids."

Clearly, steroids have not helped these acute symptoms. A T7 wedge fracture is a serious injury. Perhaps there is a trapped nerve or a spinal cord problem? Have you been screened for osteoporosis?

[PMRpro Ambassador in reply to AtopicGuy]

If you mean with a dexascan it is disputable whether that is that relevant. Both tangocharlie and I have been shown to have spinal compression fractures but both of us have perfectly acceptable dexascan results, my worst score is -1.6. My back pain has improved steadily since having a bisphosphonate infusion. Coincidence?

[AtopicGuy in reply to PMRpro]

No. I meant screened by a medic.

[PMRpro Ambassador in reply to AtopicGuy]

Even the cleverest medic doesn't see into bone without a dexascan result

[Waverley63 in reply to AtopicGuy]

Yes and I had a deca scan and my MRI scan didn’t show any wedge fracture at all and dexascan is fine, these could be side effects from the steroids. I’m waiting on a hospital appointment so hopefully won’t be too long.

[AtopicGuy in reply to Waverley63]

Has pressure on a nerve or the spinal cord been ruled out?

[Waverley63]

yes all my scans and tests are all clear.