Got pred at last!

[Creas]

I posted here a month or two back about my failure to get a PMR diagnosis in the UK. Just in case anyone's interested, I'm in Cyprus for a month and have something of an update.

I saw a private Rheumy (at a time and date of my choice; free parking right outside state of the art American Medical Center here! What a joy) who also didn't think I had PMR, due to my age, but she got me some xrays and blood tests to rule out some things. Meanwhile, she gave me pred and said to take two lots of 4mg per day. That enabled me to drop the 500mg Naproxen and 1000mg paracetamol and amitripyline and omeprazole cocktail my UK GP had left me on since the chance of me seeing a Rheumy in UK before Christmas was remote. I found this tiny dose of pred worked better than the cocktail.

Unlike my UK tests, the blood tests here did actually show raised CRP and ESR. Also raised eosinophils but all other tests were fine (even liver and kidneys much to my surprise). Even the autoimmune test ANA, and RF were negative. Xrays were all lovely too - no sign of any bone degeneration or fractures. When we met again to discuss results a couple of days later I began by saying 'well, I've assumed for decades I had mild RA and had suspected that had got worse and was part of my current problems but clearly no RA whatsoever'. She then said that she too had her suspicions blown out of the window by the test results - she apparently had suspected SLE (systemic Lupus) but that is now ruled out.

Even my neck which I thought was fused (as did my chiropractor) is fine - just some tight ligaments between the lower cervical vertebrae which explains why my neck improved dramatically after my yogi massage the week before last. The slightly raised CRP/ESR/eosiniphils could be due to a mere allergy even an asymptomatic allergy due to proximity to cats (my rheumy joked about that - have you been near cats? Of course I have - we adopted a family with their tiny kittens on our first day here as they seemed to have made their home on our tiny terrace and were peering in at us hungrily through the french window!)

Anyway, the rheumy admitted that the results did rather point at PMR but she said that normally when someone as young as me (56 - hardly that young!) gets PMR it is usually in connection with a malignancy eg. breast cancer or thyroid cancer. She wanted to rule them out. (Has anyone else heard of such a thing? I can't find any such link on the internet).

I said I didn't want to fork out for an MRI or cancer tests just yet and suggested that since I already have the pills, why don't I try an increased dose for a couple of days and see if that helps my neck, shoulder and upper arm pain which generally persist 24/7. (The tiny 4mg dose did at least stop the early morning excruciating pain which prevented me from getting a proper night's sleep but it didn't help with the rest of it).

So this morning, on the Rheumy's advice, I took 16mg pred and am waiting hopefully...

She also prescribed me Trump pills (as we call the hydroxychloroquine) which apparently are not only very cheap but extremely effective and tend to stop autoimmune diseases progressing. I will take those back to UK with me in case I feel the need but I'm not taking them now - one variable at a time best I think, for now, while we're experimenting!

Incidentally, the appointment cost 70 euros and she refused to charge for the second appointment. Paid 195 euros for xrays and 100 euros for blood tests. I don't know what going private would have cost in UK but suspect first appt alone would have been £300 or so...but I have all the original xrays, radiologists summary, blood test details and pathologists summary etc. in my possession to take back to UK.

I like the Cypriot way of operating where you actually feel like a client in control rather than some desperate beggar to be told what you're allowed to have and when (despite the vast amount of tax we've paid into the NHS over the years).

[DorsetLady PMRGCAuk volunteer]

Good to hear you’ve got some Pred - so see how it goes. Well I hope.

Not sure about some of the other Rheumy’s comments though…

[SnazzyD]

What a great outcome! Give the Pred a chance while you are in the Cyprus ‘lab’ so you can go back with a full pack of evidence. Regards Hydroxy being cheap and effective, I think if it were so successful it would be widely used but it isn’t. No doubt more educated responses on that one will come, so sit tight.

Yes, I have read PMR type pains with malignancy but can’t remember where. When I had muscle aches and pains from an undiagnosed low vitamin D prior to diagnosis to GCA, the GP queried relapse of my breast cancer which surprised me at the time.

The guidelines say 50 and upwards. I’m glad that arbitrary age range didn’t stop her seeing what was in front of her! Many have fallen at that fence.

It sounds like the private system worked well there. I have to say that the family has been forced into using private recently on 2 occasions in the UK recently and though quick, certainly hasn’t been the experience it should be for the money. I think the NHS is still good when you can access it.

[Creas in reply to SnazzyD]

I don't think BigPharma make any money from Hydroxy. They do largely control med school syllabus and GP behaviour - GPs are still getting extra money from pharma depending on how they behave.

[PMRpro Ambassador]

She's wrong about "usually" - but there is a small increase in the rate of diagnosis of cancer in the first year after diagnosis of PMR, in some cases because the PMR symptoms were due to it, in other cases caught because of increased medical monitoring. What we call PMR is not the disease itself, it is the name given to the constellation of symptoms and they can have a wide range of underlying causes which should be ruled out before plumping for the PMR we have as the problem. However, it is unusual for pred to be fully effective in such cases.

To me it is a major positive that 8mg of pred would replace all that other stuff - which long term really aren't good for you even if they work!!! I wonder if 8mg taken in the early morning as a single dose might have worked even better.

Trump tabs are used by one member of the forum very successfully as they can't take pred, HCQ has replaced the pred. There is a rather dodgy paper in the literature that claims great success with HCQ - it is worth the try probably but do get an eye check before starting and at annual intervals thereafter to catch its most feared adverse effect. The biggest problem with HCQ is that lupus patients need it as it does work well for them and there have been supply problems as a result of its popularity for things it doesn't work for ...

Your first appointment in the UK would have been IRO £250 (some charge more) but follow-ups are usually less.

[Creas in reply to PMRpro]

I might try taking my daily dose all at once first thing even when I reduce it - I don't eat in the evenings so prefer to take pills in the mornings. My only reservation is that my worst pain is 3-4am till soon after I get up so the effect of the pills taken in the morning may have worn off by then and result in waking in pain before I've had enough sleep.

[DorsetLady PMRGCAuk volunteer in reply to Creas]

You don’t need to have a full meal, many people who take them during the night [to be in the system for the 4am shedding of substances that cause the inflammation] just have a spoonful or two of yogurt, a glass of milk, a cracker, small slice of bread - anything just reduce side effects of stomach irritation from the Pred

[Creas in reply to PMRpro]

So PMR is actually the name of a bin into which similar cases are put because they have no known medical explanation? So even once 'diagnosed' one should still be seeking the cause really

[PMRpro Ambassador in reply to Creas]

Depends how you look at it I suppose - no-one knows the real cause of the immune system derangement anyway, just that the myalgia caused is pred-responsive and not all are. The technology doesn;t exist for that yet.