Symptoms persist

[polymy]

Had a Rheumy appointment last Friday and had bloods done the previous Monday. CRP <5. No ESR requested. I have tapered from 40mg pred down to 17.5 in a reasonable amount of time. I’m due to taper to 15 mg next week but my worry is that my symptoms persist. I still have jaw pain on the left and temporal headache spasmodically. Also have a very sore tongue. Whether my bloods are ok or not I don’t feel very happy tapering further for the moment. Rheumy seems to put all her faith in blood results and is ignoring the fact that my symptoms are still there.

[DorsetLady PMRGCAuk volunteer]

Hi,

I’m with you on this one. Symptoms over-ride blood markers.

We don’t recommend reducing if you still have symptoms, but are you sure that the symptoms are GCA? related - what do you mean by jaw pain, and not aware that sore tongue is normal GCA symptom. It could be something else, think you should try and see GP to make sure.

In the meantime, hold back on the reduction.

[polymy in reply to DorsetLady]

Thank you DL. Jaw pain is when I chew or talk. It’s mainly the left side but slightly on the right too. My tongue was so sore on Sunday that I took an extra 5mg pred. The pain had all gone in a couple of hours. Will make an appointment with my GP and check. I don’t know what the tongue thing is. My scalp feels shivery too.

[DorsetLady PMRGCAuk volunteer in reply to polymy]

The pain when chewing does sound like GCA. Does it stop when you stop chewing? Scalp could be as well. Not 100% sure about the tongue - can’t say I ever had a problem - but that’s not to say it’s not connected.

As PMRpro says it’s very likely you still have inflammation - despite the blood reading!

Please keep us informed.

[polymy in reply to DorsetLady]

It is much less painful when I’m not chewing or talking but still aches.

[PMRpro Ambassador in reply to polymy]

Tongue pain can be a symptom of GCA - the blood supply in that entire region can be affected so claudication is possible - the tongue is just a muscle! It is rare (it is said) but rare doesn't mean it doesn't happen.

[polymy in reply to PMRpro]

Definitely have a very sore tongue. Palate had a strange feeling too. Like I’m eating something very sour.

[PMRpro Ambassador in reply to polymy]

You haven't developed an oral fungal infection have you? Or have you any other problems? Dry mouth for example?

[polymy in reply to PMRpro]

I can’t see any thrush spots or anything. I told the Rheumy and she had a look but said nothing. My mouth isn’t dry, just a sore tongue. Think I will try some Oraldene. I did have some little ulcers on my tongue a few weeks ago.

[PMRpro Ambassador in reply to polymy]

Anything here ring any bells?

mayoclinic.org/diseases-con...

[polymy in reply to PMRpro]

Very definite bells ringing. I have had lichen planus at one time. I don’t think I have oral thrush but will see my GP. It is causing me difficulty eating and sleeping. Thank you for finding me that article. You are a wonder!

[Hidden in reply to polymy]

Just wondered what toothpaste you use? You should try one without sodium Lauryl sulphate (SLS) which can irritate and/or dry the mouth. Or mouth washes with alcohol. I can't use Colgate brands...don't know what is in it but it causes sores, ulcers and burning mouth for me.

[polymy in reply to Hidden]

I use Colgate sensitive but have been using it for many years. Will try a diff event one. I didn’t think about toothpaste maybe irritating my mouth.

[Hidden in reply to polymy]

It started suddenly about 12yrs ago for me. Couldn't understand sore tongue then got sensodyne on offer and cleared up in days.

[PMRpro Ambassador]

Then maybe you need another doctor if that is possible - or you may have to be more insistent about your symptoms. Symptoms ALWAYS trump lab results. And CRP alone may not be sensitive enough for everyone - some people have ESRs that reflect their symptoms, some have the same with CRP. But there is no hard and fast rule.

What do you call a "reasonable amount of time"? Most people I know took 6 months to get from 40 to 20 with GCA - that is absolutely the bottom end of the range starting dose for GCA and may not have totally cleared out the existing inflammation.

[polymy in reply to PMRpro]

The pred dose started at 40mg for 4 weeks, then 30 for 2 weeks then 20 for 4 weeks and have been on 17.5 for 3 weeks. I think that was it. Think there were bloods taken in between and the doses adjusted accordingly. Nothing like 6 months. My diagnosis is “probable GCA”. Rheumy said I’m one of the 50% where they can’t be specific. U/S negative and TAB negative too. Symptoms alone suggest GCA.

[DorsetLady PMRGCAuk volunteer in reply to polymy]

Yes, but symptoms are the major factor - and should be treated as such. As we know bloods can be affected by other things, or not al at! Biopsy not the gold standard docs seem to think it is either, but some still rely too heavily on both.

[PMRpro Ambassador in reply to polymy]

So they may not be able to be specific but they have treated as if it is GCA - and symptoms are returning at lower doses. That does increase the suspicion and so they must accept that this is now too low a dose. Some people don't produce the acute phase response as it is called while they are taking pred at any dose - so the blood markers don't rise even in response to the inflammation that is causing symptoms. Symptoms rule!

[SheffieldJane]

I think you have answered your own question really. Your body is not ready to reduce any more. In fact I might be inclined to return to my last comfortable dose. I don’t know what your Rheumatologist sees in her crystal ball, your bloods will look fine on all that Pred. Symptoms rule. You need to give her some empathy lessons. You can’t mess about with GCA.

[polymy in reply to SheffieldJane]

Thank you for these wise words DL and PMRpro. I felt I was doing ok on 20mg so am going to return to that in the meantime. Will inform the helpline that all isn’t well. They are always in such a damned hurry to get us off pred even if it does cause misery. I am feeling so tired and weary.

[Sofarbrnun]

Be glad you still have the prescription on hand to turn to if needed. My rheumy pulled mine because my blood work was a few points under normal and I was at the 2 year mark for PMR. He has reduced my Rayos (for which I have a coupon) to 1 mg.

My previous dose was 2 after many months of weaning. Couldn't hack it, so now up to 3mg, as symptoms continue to get worse. I'm running out of meds fast.

[Hidden in reply to Sofarbrnun]

Oh no! What a total @#_&_&+-&+--_-&:?@. I hope you can get more and don't have to suffer to get them. My cattle prod would really love that supposed doctor. 🌻😱

[PMRpro Ambassador in reply to Sofarbrnun]

Well obviously your blood work was OK - you were on enough pred. What a plonker ...

[Sofarbrnun]

Their office just got a cancellation, so I was given an appt for this Friday, 2 months ahead of my 4 month checkup. No call for labs.

It will likely be a waste of time. I've been doctor hunting for months and am scheduled to see my 3rd rheumy in middle of August. I just want the last word.