Differing symptoms from Prednisolone withdrawal or PMR flareup?
Posted , 16 users are following.
Can you tell any difference between Prednisolone withdrawal or PMR flareup?
I am pain free on an 8/7 split-dose of prednisolone but, last Monday night, I forgot my evening tablet for the first time in 4 months. Before dawn, I felt unusually stiff and by breakfast I was experiencing symptoms rather different from PMR. With PMR, I experience distinct bilateral pain in my shoulders and hips, which may extend to neck and thighs.
All Tuesday, my neck and thighs were very stiff whereas hips and shoulders just felt heavy. I had indistinct pain from neck to knees. I took the missed prednisolone dose on top of my Tuesday morning dose and, by Wednesday, pain and stiffness were fast evaporating.
1 like, 12 replies
mamici1 Joydeck
Posted
Hi, I am newly diagnosed (November 2017) with GCA & PMR, so I'm still learning... but I get these symptoms when I taper. I reduce by 5 mg every 10 days (I was on 80mg, now on 60mg and yes, there have been glitches along the way!). On the day after I reduce, I get the bilateral pain in my shoulders and hips, a stiff neck, and my legs and buttocks feel heavy, like bags of cement. This stays with me about 4-5 days then slowly starts to dissipate. By then I'm almost at the 10 day mark and reduce again, so it's a vicious circle! The HealthUnlocked community seems to think it's steroid withdrawal, so I have been dealing with it. I will mention to Rheumy, next time I go. Hope you feel better!
RD_Swede mamici1
Posted
I have been off pred for 9 years and have had no flare - lucky me. I had GCA and pmr but they started me on 20 mg which is far too low. But I never had any GCA pain. When I got to 5 mg (it is so long ago so I can be wrong about the dosage) I thought I could try to spread out the lowering period to make it easier for the body to adapt
I took the new dose one day and the old dose two days and repeated this one more time. Then I took the newvdose every day. This helped me and when I posted it, it was mentioned as Ragnar's method. Later it was developed by stretching the period much more and the method is called the dead slow nearly stop method or DSNS method. I therefore think that maybe it would be better for you to reduce the first day by 1 mg, second day 2 mg, 3rd day 3 mg, fourth day 4 mg and 5th day 5 mg. Then you stay there for one week and continue to reduce by 1 mg a day etc. It is a rule that you shoul never reduce more than 10 % so when you reach lower doses you have to take this into consideration. Good luck Ragnar
mamici1 RD_Swede
Posted
Hi Ragnar, THANK YOU!!!! Like I said, I am "new" to all this and a bit leery of all the taper down methods that have ben suggested to me. I so appreciate the help and advice, but everyone seems to have a unique taper down method, that worked for them and it gets pretty confusing! I saw a Rheumy (privately) here in Brighton and then went and got a second opinion from Dr Rod Hughes (who came highly recommend on the HealthUnblocked site). He said he agreed 100% with her treatment, taper down and assessment of my case... so I guess I'll stick with this one, until it, or unless it becomes too problematic that I need to mix it up... Thank you again! I have archived your post so that I can find it easily when I need it!!!! Cheers
wendy64238 mamici1
Posted
nick67069 Joydeck
Posted
In general, flair and withdrawal symptoms are similar, but withdrawal symptoms lessen over time and go away, while flair symptoms increase over time and only can be reduced if you increase the dose.
rusty49 nick67069
Posted
EileenH Joydeck
Posted
Usually withdrawal happens immediately you drop the dose - it is the body protesting that it hasn't had the fix it is used to. The symptoms then improve over the following week or two. A flare usually takes a few days at least to appear - it may be long if the new dose is only very slightly too low to clear out each day's dollop of new inflammation and you had been at a low baseline for inflammation anyway. But even dripping taps will eventually fill a bucket.And a flare continues to worsen day by day.
The return of morning pain is to be expeced if you forget your evening dose - the cytokines (inflammatory substances) that cause the problem are shed in the morning at about 4.30am. Taking a night-time dose means the antiinflammatory effect is still there and they don't get a hold, no inflammation, no stiffness.
susan29426 EileenH
Posted
I still don't understand how all this works, hope you can enlighten me, as usual, Eileen. Are the cytokines the cause of PMR pain? In my case, the Actemra has eliminated the inflammation, but I still have pain. Should I conclude that the pain is from other sources now -OA-?
EileenH susan29426
Posted
The cytokines are what cause the inflammation - they are needed for other functions but the autoimmune disorder makes them more pro-inflammatory. In the case of GCA and PMR it is a cytokine called IL-6 that is probably the culprit and Actemra interferes with the production process in some way (it works on IL-6 at least) so yes, that should remove the cause of the inflammation if that is what it is. But there are other causes of pain - and if they don't involve IL-6 then Actemra won't make much difference. Whether it is OA or not is another question.
phyllis48183 EileenH
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Anhaga phyllis48183
Posted
https://patient.info/health/visual-problems/giant-cell-arteritis
GCA and PMR may be different manifestations of the same auto immune disease. There is some overlap in patients who have both disorders. GCA is more serious in that it can cause blindness if not treated with very high dose of pred.
EileenH phyllis48183
Posted
Anhaga has explained - but your doctor should have told you the signs and symptoms of GCA as some patients with PMR (1 in 6) later go on to develop GCA. If you get any of the symptoms of GCA don't hesitate to go straight to your doctor about them. If you get ANY visual symptoms at all, double vision, blurriness, dark patches, lights, anything unusal, go to A&E/ER, don't wait even a day to see as GP and certainly never a week!