Upcoming PIP review

[violetsnowdrop]

Hi everyone,

Following multiple tests to establish the cause of my constant headaches,(involving Rheumatologist; Opthalmology and ENT) the following has been established:- apart from sinusitis, the other cause of the problem was variant eyesight as affected by long-term use of multiple medications. The optician stated that I have pin-prick cataracts from long-term steroid use but that medications for hypertension AND diabetes have also both contributed. Variation in sight is currently on roughly a six-month cycle meaning that my sight has returned to what it was 18 months ago! A new meaning to "On your bike"??

I also saw Rheumy again yesterday for a review--interesting, to say the least! I had reduced from 4/5 mg alternate days to 4 mg daily but was beset with aching shoulders and hips, extreme myofascial pain in small of back and the classic "shooting pains" in both arms and legs ,emanating from the bursa endings. I intentionally remained on that dose until yesterday when, on examination , I was told I most certainly had a PMR relapse and was to return to 5 mg for a week before returning to 4/5 mg and not to drop again until I was instructed by him!

Why is this so significant? I hear you ask--it is the FIRST time in 3.5 years that he has said I have PMR. and just before a PIP review next Monday 31st October. Thinks--"I wonder if the examiner is coming via a birch wood and will wear a pointed hat?"

[DorsetLady PMRGCAuk volunteer]

Don't they always!

[PMRpro Ambassador]

Blimey - did you ask for that statement in writing?

Have fun - maybe it will be a fairy in disguise...

[violetsnowdrop in reply to PMRpro]

Hi

It was even better than a fairy- (she had previously been an Occupational Health nurse- which was reflected in the questions asked, as well as the non-pain physical assessment carried out) and has recommended that I not be subject to further reviews as the cumulative effect of PMR; Lymphoedema in both legs and Diabetes has worsened my mobility and is unlikely to improve in the foreseeable future. Fortuitously I had strong nerve pain in my left hand/ arm on the day of the examination, almost taking off when gentle pressure was applied to the back of that hand. Fortunately it has all but dissipated two days later.

I have also had eyes tested by a local optician who has recommended that I wear single-vision lens, NOT varifocals as my left eye has been unable to adjust to the lens.

Another good result! The headaches which had the potential to be serious were debunked as having two fairly minor causes (severe sinusitis & eyestrain).

[PMRpro Ambassador in reply to violetsnowdrop]

All sounds good to me!

I really wasn't enthusiastic about variofocals when they were suggested to me - and have managed fine on single-vision specs for years. It does help that I am very short-sighted - all I do to read pretty much anything is take off the distance glasses and hold it close enough. So distance and computer specs fulfils all...

[HeronNS in reply to PMRpro]

On the other hand I didn't even need a period of adjustment to my varifocals., I find them brilliant. I do, however, take off my glasses for fine print, etc. It was fun this morning when I needed to read the phone book (no glasses) at the same time as I was pressing the numbers on the phone (needing glasses). This really dates me - a paper phone book and a wall telephone!

[PMRpro Ambassador in reply to HeronNS]

What are they???????? I can't find anything in our phone book so I've given up....

[Celestee]

This is ME! Eye pain and high sed rates, high white blood cell counts.

Eye Dr says beginning of cataracts. Eye pain comes and goes.

Feels like boring through my eye socket.

Only thing relieves it is more prednisone.

I have been working hard to lose the weight that prednisone causes but it is hard to do when you are exhausted.

Finally eye Dr is referring me to get a biopsy test for giant cell.

Let's see. Sadly the result is just more prednisone.

[PMRpro Ambassador in reply to Celestee]

A biopsy probably won't show much if you have already been on pred. And they should know that. They have to treat on symptoms.

[granny-b in reply to PMRpro]

Hi. The PowerPoint from 2016 Glasgow suggests that ultrasound is coming more into favour than biopsy. However I may have misunderstood..... Would that still show results after steroids?

I had a positive biopsy for GCA after a week on high dose Prednisolone. When there was a possible relapse my consultant did an ultrasound which was tricky because of 'too much hair'. I have short but very thick hair. I think he went back to ESR and symptoms. Fortunately I was ok.

[PMRpro Ambassador in reply to granny-b]

It may be coming more into favour - but unfortunately it is not widely available outside the centres who participated in the TABUL study. It takes a few months to learn an U/S technique and you have to use it regularly to keep up skills. Once that bit is sorted out - yes it will be favoured as it is non-invasive and as good if not better than a TAB.

I imagine it will depend on how long you have been on steroids and at what dose. The halo sign they look for certainly diminishes over the first 4 days of treatment.

The conclusion in the Abstract of a report of the TABUL study says:

"In newly diagnosed GCA, US halo size decreases rapidly with steroid treatment and correlates with the presence of ischaemic symptoms, supporting its early use as a diagnostic and potentially prognostic marker. In future we will be exploring the potential value of change in halo size in individual patients over time to determine its value in monitoring response to treatment."

[granny-b in reply to PMRpro]

Thanks PMRpro.

At least I had a positive biopsy so no question about my diagnosis. I remember being relieved it wasn't something else which they needed to hunt for.

Not sure how they confirm a relapse as they can't do another biopsy. Must just stick to ESR and symptoms.

[PMRpro Ambassador in reply to granny-b]

Can't do an U/S either - artery all gone!

In general symptoms are always king - and as you say, you don't have any argument about what it was to start with. Which is the main advantage of the TAB - it's a gold standard for those who get a positive result!

[granny-b in reply to PMRpro]

My consultant did the U/S some 6 months into GCA treatment when I had been showing symptoms of a relapse.

He looked both sides up to the biopsy on the one side and all the way up the other side plus at the back of my head.

I 'like' to have text book symptoms (positive TAB, jaw claudication, high ESR and really bad headaches ) as it helps diagnosis.... 😉.