I had my follow up appointment yesterday with the Rheumatologist he had previously requested tests for ANA, Rheumatoid factor, CCP antibodies, Serum immunoglobulins, urine for Bence Jones protein, ESR and CPR, vitamin D level , Myeloma screen, X-rays on both hands and wrists and ultrasound scans of the left hand and wrist to test for signs of synovitis.,
He viewed the X-rays and scans of my hands and examined my results from the blood / urine tests to check for RA and bone cancer were all negative
After a very stressful few weeks waiting for my results, I have finally been positively diagnosed with PMR! I know it’s not something to celebrate but it was better to hear that than RA or bone cancer!
I am struggling a little with the taper that he had pushed me on, I am currently on 12.5mg having tapered from 16.25 over 3 weeks, he wants me to reduce it by another 2.5 down to 10 mg next week and then a further 1mg every 2 weeks.
I a currently feeling pains in my upper arms and shoulders, the pains are not the same level as the pains I was getting prior to preds, the withdrawal symptoms were awful but have now dropped to around 40% of this he original pain. This seems to have levelled off at this amount of pain.
Should I reduce another 2.5mg next week? Or should I stay where I am for a bit longer??
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Leepeelee
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Good you got your diagnosis - and if you have to have a chronic autoimmune disease, PMR is the one to have!
No, don't taper. You still have pain, and a taper of about 4 mg over three weeks is too fast anyway. Even at my fastest tapering at the beginning I didn't go that fast, and when I was tapering 1 mg per week (to the shock and horror of people on the forum when they heard that!) I had no pain. My doctor told me to stop tapering if I felt pain return, which did start to creep up at 9 (after a month at 15, then taper 1 mg per week) so I went back to ten for a couple of weeks then started a very slow taper (Dead Slow Nearly Stop, one of our pinned posts) which is 1 mg every month or six weeks, gradually introduced by slowly replacing the old dose.
The problem with tapering too quickly at the beginning is you don't get the symptoms properly controlled, there is still inflammation, and if the disease flares up again it may be very difficult to achieve your original best result. From what you tell me you probably should have stayed at a slightly higher dose for a bit longer to see if your symptoms improved more. You should achieve at least 70% improvement, sounds like you have 60% (although I am innumerate and may have misunderstood).
There are a couple of other things to do to ameliorate your symptoms. Make sure you get adequate rest, and exercise should continue but not be strenuous. You can try a small magnesium supplement as many of us are deficient, and is often the first thing some doctors will suggest if a patient is presenting with muscular aches and pains. There are different forms of magnesium with different potential side effects (loose bowels being one) so do a bit of research before buying one.
Don't take your calcium supplement at the same time as pred as they interfere with each other. In fact calcium needs to be avoided with a number of other supplements and medications as it can interfere with proper absorption.
You can take calcium alongside corticosteroids as long as you take the doses 2 or 3 hours apart - for example, pred for breakfast, calcium for lunch and dinner. Calcium should always be taken at the same time as food to reduce the side effects some people experience.
Welcome officially to the club. Your taper seems very quick and as you are having pain we dont usually suggest tapering any further. I personally would hsve increased back to where i had no pain and stay there till the pain went. Only then would i start tapering again and only very slowly. You need to speak to either your gp or rheumy about your pain. Good luck. YBB
I had lots of blood test a couple of weeks ago, and I didn’t understand the results, most were in normal level but had a positive ANA level and high Iga antibodies level which was highlighted in red, anyone heard of these results as I have not got another appointment booked yet
You do need to go to discuss these with your GP or Specialist as soon as possible as a positive ANA and high Iga are indicators in other Chronic conditions , you may need further tests or they will need to discuss your diagnosis so far with you further.
If 12.5mg is not enough to control your symptoms today, it’s not going to be enough tomorrow, next week or next month!
It doesn’t work like you think. The longer you stay on a dose that isn’t sufficient, the more inflammation is allowed to build up and the worse your pain will be.
You need to take a high enough dose to control your symptoms before you even consider tapering.
This might explain a bit more about your illness, and treatment -
It's not like pain killer... As DL say you have to be taking enough to control the inflammation each day. The struggles are when pmr is still as active as yours will be at a couple of months in. If you drop too far getti g it back under control is hard. I ended up back at the beginning after 5 months and it took until 7 months for me to understand this wasn't right... Thanks to the forum I takedto gp, who raised it from 8mg to 12 and then referral to rheumy to put it back to my starting dose. So you need to go back to the dose that worked best stay a while unt symptoms go again to best you have had then taper again.do it while you are feeling positive... That's must easier on the mental approach.
Why the heck has the Rheumy put you on such an aggressive taper now you have got a PMR diagnosis?
It will take time to get your inflammation properly under control , especially as all the Negative Stress of waiting for your results will have made you PMR Activity Flare.
I would have thought they'd have put you back on 15 mg for a month until things had settled and then begun the slow taper based on your progress rather than pushing down the dose hill.
Is this Rheumatologist experienced in PMR , because if they plan for you to taper like that it gives the impression they think you will be over it in 6 months , as you will know from reading patients experience on here the 18 months to 2 years suggested in the guidelines aren't always realistic.
I'd personally stick with the dose you are on , or if you feel your symptoms are not as reduced as they could be increase to a higher dose.
Print off the guidelines and the taper methods recommended here and either question the Rheumatologist requesting a slower taper or work out a taper plan with your GP instead as they are the ones that you will have more regular contact with to manage your PMR.
As Heron says , you now know it's PMR so you can follow all the Pacing recommendations and Self Care tips on the forum to make life with PMR and Tapering easy as well.
I would stay Leepeelee. I spent 6 weeks on 20 mgs just luxuriating in the relief from symptoms and the vindication of a firm diagnosis after months of tests. I would respectfully suggest that the taper you have been given is too steep with too big a jump between doses. Your inflammation needs proper time to settle, your drops should not exceed 10% of your dose. My drops were more like every 4 weeks using dead low and stop. Recommended tapers appear as pinned posts. Do your part by pacing your activities and resting. I was ecstatic at finally getting a manageable diagnosis. I had feared much worse. Good luck. X
Honestly - if you are going to diagnose someone with PMR, at least use the pred properly! That resembles no taper I have ever seen in the medical literature! If you already have some pain, continuing will only end in tears.
The level of symptom relief you achieved with the higher doses is your guide: you shouldn't feel worse at the end of a taper than you did at the beginning. Any increase in symptoms is a sign that ou are nearing the dose you will need for a while. It doesn't mean you won't get lower, just not yet.
It sounds as if he thinks pred is a short term management strategy - it isn't. You are not heading for zero after a higher dose that cured something, you are looking for the lowest dose that manages the symptoms caused by a daily release of inflammatory substances. If it isn't enough, the inflammation will build up and cause symptoms again.
From 10mg the biggest reduction should be 1mg per month - and reductions bigger than that are said in the medical literature to be predictive of flare. I'd have a detailed discussion with your GP about this.
What everyone has said. Some doctors are so terrified of pred makes you wonder why they prescribe it at all, just to take a patient off it too fast and too soon. What we now know is that managing the symptoms of PMR effectively and reducing in such as way as to maintain that level of feeling as good as you can (later there may be "niggles" as you taper, but that's a story for another day - or month or even year) means you will in fact take in less pred than if you flare and have to go up higher again and start all over. Slow and steady wins the race. And the other thing we now know is that most side effects (and none of us get them all!) can be managed and long term low dose pred does not lead to adverse outcomes. There has been a paper published about this:
Yesterday evening the pains in my arms eased off quite a lot, when I woke this morning I felt so much better, today has been almost completely pain free.
If it was a flare, it wasn’t a full on, back to square 1 pains.
Is it possible to have a mini flare, or do you think that this could have been a stretched out period of withdrawal ?
What ever it was, it’s gone now, I haven’t increased the preds either which must be a bonus!!
I think stress can make pmr symptoms worse. I have had blips where stress has pushed my hormones etc to levels where pain increases and when I rest for a few days and the stress is relieved I feel better without increases ing pred. I thi k that happens even without pmr when enzymes are released into the muscles. Glad you feeling better.. Just take it easy fir a few days and make sure all is calm 🌻
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