Is it really pmr?

[35bump]

I have not been in touch for sometime as have been so unwell.

My symptoms increased and health deteriorated end of last Year to early this year until I ended up in A&E and was told I had suffered a stroke. I went on to be given a new heart valve and pacemaker as the valve had been destroyed by Endocarditis, a rare but nasty complaint from which many sufferers die.

One of the lovely volunteers on this site did express her doubts about my pmr diagnosis. My symptoms certainly presented as pmr but whether it was endocarditis all along (one of the symptoms can be Polymyalgia) or the prednisone lowered my resistance to the organism which entered my blood stream and caused the havoc I will probably never know.

This post is just a warning to all to monitor symptoms and remind everyone to use prednisone with care.

To put mY situation into perspective, only 20 in a million suffer from this so don't worry too much.

Best wishes and I hope your symptoms disappear in time.

[HeronNS]

I am sorry to hear that you've had such a difficult journey the past few months. It sounds like you are on a road to recovery now, so best wishes to you. Thank you for sharing your experience. Sounds like you could write an article for a journal, rather a unique situation I think.

[Skihexen]

Thanks for sharing, wishing you a speedy recovery.

[Megams]

Hi 35bump - so sorry to read of your recent major set back plus having to undergo heart surgery to replace your heart valve, plus pacemaker.

I am most interested in your post especially to learn a little more of your history.

Please can you tell me what your original symptoms were for the diagnosis of PMR and how long ago was this? Also I presume you were on Prednisone for a while, if so how long?

The reason I ask is: - there is obviously no doubt with my PMR diagnosis Jan/Feb 2015 even though I was struggling some 9 or so months prior & Rheumy treating painful areas with small amounts of cortisone injections as had 2 previous falls.

Whilst attempting to slowly taper late last year & earlier this year seemed to bring about difficulty breathing at times - must say I was diagnosed with obstructive sleep apnoea Nov 2015, now under control with CPAP machine. Not overweight & otherwise do all things right - my late Father had this, so genetic I'm told.

Breathing difficulties continued to decline & was admitted to hospital with what I was told was a mild heart attack April 2016 - prx'd usual fare of a beta blocker, aspirin & brilinta + a cholesterol lowering med even though cholesterol level fine. The first 3 meds interfered with my breathing so back into hospital. Now off all of these meds thankfully.

Was still waiting 5 weeks on for MRI which in the end I arranged privately - not heart attack but mild myocarditis.

I now have leaking mitral & tricuspid valves which is of great concern to me. I had heart bypass surgery to correct atrial septal defect 28 years ago (not 38 as mentioned in one of my posts) plus now an enlarged atrium once more. Had none of these changes prior to PMR and a routine echocardiograph 2014 did not show these changes.

Can you shed any more light on what you know and are you still being monitored for PMR?

Blessings are sent your way in the meantime.

[35bump]

Hi Megams

Thanks for your kind words.

Unfortunately I don't really know when the pmr became endocarditis or whether it was endocarditis all along. What I can tell you is that my health deteriorated from October 2015 when my ankles began to swell and gave me intense pain . And Towards the end I was running a temperature of 102. I had painful lesions in my finger nails and painful red lumps in my hand and fingers. My rheumy consultant doubted the pmr diagnosis but ended up with a diagnosis of infective arthritis. It was only after a bleed on the brain that my stroke consultant did further blood tests and checked my hands and finger nails that she recognised what I was suffering from.

I would suggest that if you think you have similar symptoms you have a blood test to see if you have any organisms in your blood stream. There is a high rate of mortality but I don't know how long it takes for the organism to overwhelm the body if left untreated. It wasn't picked up early as I do not inject drugs so don't fit the usual profile.

I am not sure if I still have pmr although my hips and thighs are stiff and hurt when I wake up and for a while afterwards but as the pain is nothing compared to what I experienced earlier in the year I don't see it as a major issue

Please do visit your GPs to discuss further if what I have described does ring Bells.

Finally who knew one could be thankful for a stroke!

Hope this helps.

[Megams in reply to 35bump]

Hi 35bump - thank u so much for your response which I appreciate very much.

Firstly are you still taking a steroid for suggested original diagnosis of PMR?

What your story tells me is that we are all so much at the mercy of Dr's with what we present with on the day - it may or may not determine whether in fact we have be given the right diagnosis. I say this in light of the fact that I have twice now been hospitalized & treated for a heart attack. A blood test identified infarct theory checking troponin level which in my case was continuing to climb so hospital swung into action which I sincerely appreciated. Angiogram excellent so discharged to continue with cocktail meds until answers found which still not 100% sure & too vague for my liking at this stage. Mild infarct vs mild myocarditis on 1st discharge papers. Never received 2nd discharge notes........

The underlying niggle I have is that with each hospital discharge, tests that I was to have as inpatient did not occur. Long weekend 1st admission so more urgent cases are treated - I wonder if in fact if these tests had been completed 1st admission, I would not have had 2nd admission - all comes down to money ultimately which I understand but defeats a cost cutting exercise I would suggest.

As mentioned I went privately for MRI - still swallowing hospital prx'd meds (5 weeks on) which eroded gut once more & set me back even further. My gut has always been super sensitive & struggle so much that I do all I can to find answers asap.

In meantime my Rheumy (private) had sent me to a Respiratory Spec.(private) who detected mild underlying asthma on exhaled breath - big surprise to me but likely occurred with tapering steroid. Prx'd latest (QVAR) asthma preventative containing another steroid of which 60% goes into lungs, 40% elsewhere & highly likely gut 1st port of call.

Still feeling drat gut wise, no appetite, fatigued, developed pus filled nail bed right finger nail. Lanced & swab revealed (1 week on) fungal infection. Finger nail next to it suffered same exact same fate. Constant hot salt soak + correct prx'd fungal/antibiotic cream. Slowly developed arthritic joints in fingers now, slightly more noticeable with tapering, especially in morning.

In meantime was referred by Resp. Spec. to see another Dr in his practice who specializes in cardiac/lung exercises with excellent results thus far. Happened to google side effects of QVAR & stopped immediately having identified my symptoms - Ventolin used as a back up when needed which is not often

MRSA identified with rectal swab whilst in hospital - have an ESBL organism which is very common but am seeking advice of a Gastro Spec. who may be able to assist me with improving my gut flora. May be looking at a "faecal transplant" - not sure but worth exploring all my options.

Finally I have right hip pain should I lie that side for any length at night. Tolerable but will be seeing my other GP tomorrow who is an Integrated Health practioner & with whom I have more faith than more own main stream GP.

Am going to air your story to see what he thinks as I am still unsure but do know that my body has been severely racked with Candida & it is my belief that possibly with the use of the QVAR sent it spiralling seriously downhill.

Sorry this is lengthy, my history a bit complicated - please stay in touch.

Abundant blessings are sent your way once more