CRP and SED rate down to normal range but still have symptoms of PMR

So you increased dose based on symptoms, not based on blood test results?

Indeed, this is exactly what my doctor tells me to do.

Yes!

Yes, my rheumatologist increased it based on the symptoms (my last 2 blood tests, May and Nov, came back normal). In May he decreased Pred from 8 down to 5 and added 15mg Methotrexate +folic acid.   In Aug. I started getting shortness of breath and it gradually continued to get worse.  I went to see him one week ago and he took me off the Methotrexate/folic acid.  My breathing is 90% back to normal after just one week.  From what I am reading here I should have stayed on 5mg Pred.  So, the question is:  I see the rheumatologist again in 2 months.  Should I tell him that I want to start tapering 1/2mg per month?  If some symptoms return do I just tolerate them (they are not unbearable) and wait for the adrenal glands to catch up?

Yes! That may explain it!

I was relatively symptom free on 5 mg. When I decreased to 4 mg I had a very bad flare up - but my blood levels did not rise above normal range. I still do not feel as well, yet blood levels still showing "normal".

I am certain my current symptoms are from my PMR as they are exactly the same as before. Glad to know many agree that best indicator is symptoms and not blood markers at this point in my treatment. I would rather not switch to a different drug (methotrexate) or begin exploring other reasons for the symptoms when it seems clear to me from what everyone here has said that this is quite typical.  

Thanks for the insight, EileenH!

 

That is very interesting, Rimmy. I felt that the taper was too fast despite my inflammation markers being within "normal range". Plan to use what I have learned on this forum to advocate for slower taper. When exactly did you taper? Was it when you became almost symptom free at a particular dose? 

Hi again

I have been taking Pred for about 10-11 months now - initially at a 'lower' PMR dose but a few weeks later developed what appeared to be GCA symptoms so then I had a 60mg level to taper down from. Consequently now still at 12.5 mg. Given that most of us will have to take Pred for two to six years and some a lot longer a 'quick' taper isn't necessarily the best idea. As has often been discussed here (searching this forum on 'tapering' is very interesting) - 'flares' often mean tapering back up trying to (re) find the level which best manages the inflammation in your body. This yo-yo-ing can sometimes mean you end up taking more Pred in the longer run - and there is some argument it is the cumulative dose which matters in the end. It is reassuring to know though that recent research suggests PMR doses don't do most people too much damage in the long term. I am no 'expert' unlike some very erudite members of this forum but I think all the evidence (anecdotal and otherwise)  suggests that slow tapering seems to work best in the end. I am tapering down at just 1 mg a month at present and when I get to 10 mg I will probably slow that down again as it is unlikely I will be 'better' for some time. I feel great most of the time and ever since that first dose of Pred - but still experience fatigue if I overdo it - evidence that PMR/GCA is still simmering in the background and that the medication is just managing the inflammation that causes those painful symptoms. That is fine by me - I regard Pred as a 'saving grace' and I wouldn't have done very well without it. I don't regularly check my inflammation markers either as they didn't rise very much even when at my worst - but I do 'listen' to my body and that's what matters in the end. 

Good wishes

You raise an excellent point, Rimmy. One could end up ultimately taking more prednisone in the long run if the taper is too fast and results in a flare and having to go way up to higher dose again. My doctor kept emphasizing the need to get off prednisone - hence the insistence on the faster taper regimen - but in the end it has backfired. I have only been on prednisone for 10 months - which I see now from the contributors here that this is not that long. 

Have an appointment to see a different specialist in PMR this week due to lack of confidence in previous treatment plan. I am more convinced than ever that I need to listen to my body - and not treat just based on the calendar or the blood tests! And now, thanks to this forum, I feel empowered to advocate for that!!

Hooray for this forum and all who help inform!!

Of course your inflammation markers were in normal range while you were on pred, that is no indicator that a patient can reduce easily. The point at which that dose isn't going to be enough may be another 5mg lower - or it might be just 1mg lower. You can't know in advance.

Hi Claire,

Re tolerating some discomfort: I went to another doctor for a second opinion last week. He said that when deciding at what point to taper, you want to do so "when you have just enough symptoms to know that you have the disease, but not so many that you are miserable." 

In pervious tapers, my symptoms had all bit vanished during the day at the point I lowered my dose. That changed as I reached 5 mg. Going down from 5 to 4 was too much for me and resulted in a flare and going back up to 5. Yesterday, while at 4.5, I reduced to 4 even though I had mild aches and heaviness all day long. Hoping this second attempt to reach 4 will be successful. 

I agree with you about the enormous value of this platform - SO glad I found this group of helpful people who are a wealth of information. Glad to hear you are down to 5/4. This last part is a challenge - which I have learned from this community is common at this stage. Say connected to fellow members of "the club" for insights and support as we all strive to cope with symptoms and get down to 0 mg per day. 

Hello Gail, 

A great help, thanks. sounds like you have found a good Dr. I think I do get a little too much bicep 'pain' but note it has been a little worse since dropping from 5 to 4...at Consultants wishes !  I shall continue with 4.5 dead slow next time!  As you say, this forum offers such a lot, not least for our sanity.

I shall be interested to hear how you get on with the taper as you seem quite similar to me

(I started with 40mgs Feb 2016 as 20mgs didn't fix it. enteric coated Pred by the way)

goodluck to you

But remember that you are not tapering relentlessly to zero - you are looking for the dose that JUST manages the symptoms. And if 5mg is it - 5mg is it.