Increased Pred made a difference but not there yet

[LBM1953]

Hi All. I had my dose increased from 15 to 20 mg (as suggested by PMRpro as well as others). First (increased) dose on Saturday. Saturday was when I had my feinting episode and the morning pain was excrutiating (as it has been since the end of May) . The rest of the day evolved much as it has last two weeks, pain at 9+ morning 5 by tea time 2 by bed time. Sunday was the same. However Monday I was at 6/7 in the morning then at 5 by early afternoon the 2 by tea time and more mobile as well. Tuesday was the same and today seems to be going the same way. So it seems that the additional 5 mg has helped and I'm now heading in the right direction, but not there yet (I am getting 20 hours of amelioration, up from 16 hrs and starting from a lower pain base, 6/7 rather than 9+). Have a weekly telecon with the doctor on Friday and intend to push for 25 mg to see if that can get me to a full 24 hours of relief and then 30 mg if that doesn't work. I'm due to holiday in Cornwall on 3rd July and whilst I know I will not be able to do my "normal" activities (mainly walking the coastal path), it would be at least good to be able to "potter about" with my pain levels under control. Am I being too optimistic? Regards. LBM1953

[PMRpro Ambassador]

Sounds like a good start - I'd really advise against wanting to go to 30mg when this has made a notable difference though. Patience is also required - what goes up, also has to come down and that is harder.

[LBM1953 in reply to PMRpro]

Hi PMRpro. Do you think I should ask to go to 25? Regards. LBM1953

[PMRpro Ambassador in reply to LBM1953]

I wouldn't, not yet - be patient, Rome wasn't built in a day - but do moderate your activity, give the pred a chance to work.

[LBM1953]

Many thanks....

[Pixix]

When I was first diagnosed 15mg didn’t work for me but 17mg did. Thinking, why leap up in dosage by 5mg each time rather than trying a few extra mg now you are so high! Just a thought, I’m no expert!

[LBM1953]

Hi Pixix. How long did it take after you started the 17 mg for it to work? How pain/stiffness free are you? Today I got up and am actually worse than yesterday again. Not up to the 9+ level but certainly at 8. Regards. LBM 1953

[PMRpro Ambassador in reply to LBM1953]

If you are getting worse and you are resting and being a poorly person (for now at least) then I think it is time to tell the GP clearly what is going on. Remaining at least stable or improving, albeit slowly/only a bit, is one thing - getting worse is another. And potentially, suggests it may not be PMR at all.

[LBM1953]

Hi PMRpro. I had a conversation with another Doctor on Monday after my "episode" on Saturday and she also said that if the increase to 20 mg didn't make a difference then they would have to think that it may not be PMR. However from Monday, Tuesday, Wednesday it did improve and I was hopeful. Its just that today I have gone backwards a bit (not to where I was at its worst). I didn't do anything different or untoward yesterday, drove to the shop and a bit of cooking, nothing strenuous. I spend most of the time watching sport on TV. It is definitely a morning issue because by mid afternoon I have been much improved over the morning. Got a telecon consultation with Doctor tomorrow. Many Thanks. Regards. LBM1953

[LBM1953]

HI All. GP phoned me "out of the blue" yesterday. Whilst I had two reasonable days on Monday and Tuesday (and hopeful) yesterday and today I have gone backwards (and now hot hopeful). It is pain everywhere and for some reason my left hand (particularly the thumb base) becomes a total pain (literally) and totally non-functional (this is a relatively new thing as it wasn't there when I started my PMR journey). GP is concerned that I am not responding the the Pred as expected (and questions whether it is PMR) and to be fair she said that she would make an urgent referral to a Rheumatologist, and speak to the Consultant Rheumy and phone back (which she did). Rheumy agreed that all my markers pointed to PMR but that I wasn't responding to the Pred as expected, but that this was not of itself unusual. Rheumy said that I should take 25 mg Pred and up to 30 mg if I needed it. I may continue with 20 mg (at 6 a.m.) as I am at present with 5 mg in the evening before bed. Did this once last week and it seemed to help with the morning agonies. Gave more bloods today. Apparently my CRP last week was 98 which I'm told is somewhat high. I am pretty much non-functional until mid afternoon when the pain and stiffness eases.

[PMRpro Ambassador in reply to LBM1953]

I already commented on the other thread where you mentioned the return of pain - asking if you did more on Monday and Tuesday. Your rheumy has done what I was going to suggest was the next step.

Interested though - where are you and where does your rheumy work? And when you say mixed ethnicity - what do you mean?

[LBM1953]

Dont know yet, but I live in North Wales not far from Chester so Rheumy will be either North Wales or Chester area. Not sure I mentioned mixed ethnicity, but I do have Asian blood. Both my grandfather's were Chinese, parents half Chinese, which makes me half chinese. LBM1953

[PMRpro Ambassador in reply to LBM1953]

Hmmm - the incidence of PMR in Asians is vanishingly low. As with the age 50 thing, that doesn't mean it doesn't happen younger or in Asians, but it does mean something else is just as likely, if not more so. I wonder if the rheumy registered that.

[LBM1953]

Rheumy won't know until I get to seem them. GP probably not aware.....

[PMRpro Ambassador in reply to LBM1953]

Is it not obvious that you have Asian heritage? You would hope it was in the referral letter: "I am referring this pleasant Asian patient ..."

[LBM1953]

No it's not obvious. In fact lots of people are surprised when I tell them I am half Chinese as we don't really have any Chinese ties, cultural or otherwise. I guess it's attacking the English half of me 😄

[PMRpro Ambassador in reply to LBM1953]

I suppose it is something a lot of people don't think of in the UK really - even if some others seem exceptionally sensitive to non-Caucasians.

[LBM1953]

Doctor just phoned. Had some of my blood results from earlier today. CRP up to 106 from 98. White cell count also up slightly. She is surprised at these. She asked me a lot of questions about appetite, nails, lumps, bruises, cuts etc. However I have none of these, just the pain and stiffness. She is thinking that it may not be PMR because of the blood results, but does not know what it could be. She did mention vasculitis (PMRpro mentioned this in another thread), but did not think it was that either. Apparently I am a "work in progress".

[PMRpro Ambassador in reply to LBM1953]

Not sure why the blood results are changing her mind - but I think she is quite right to question the assumption it is PMR. The blood numbers will only fall even in PMR of the pred dose is enough, too low a dose, even by not a lot, won't do. Has to be enough.

[LBM1953]

Hi All. So after Doctor/Rheumy teleconsultation on Friday 18th I have upped my Pred to 25 mg (17.5 a.m. 7.5 p.m.). It has only been four days, and I am not counting my chickens because I have improved before only to go backwards, but it has made a big big difference. Mornings my pain is generally quite low at 2 except for shoulders/upper arms which can between 2 and 5 depending on what I am doing with them, and I am a lot more mobile (went for a couple of 1.5 mile walks yesterday without much of a reaction (slight twinges in groin/hips). I know that the danger is not to go mad with the exercise. Question now is “is this is where I should be” with the Pred or should I be thinking “increase to 27.5 or 30 (as sanctioned by the Doctor/Rheumy) to try and improve the shoulders further”? I have a bloods appointment on Thursday so hoping that the improvements in my symptoms translate into a reduction in CRP from 106 and other markers. Again thanks for all the help and advice, it is absolutely invaluable.

[PMRpro Ambassador in reply to LBM1953]

I think it really does mean that your doctors need to put their thinking caps on because this is a very atypical response to pred for PMR and it suggests there is something else going on. And she really should have done something about imaging before upping the pred again