Tapered too fast?

[softekcom]

Hope you are all well.

In pain since Friday. I started off on 40 mg in August which i quickly tapered down to 10mg. I continued on this for several months until some alarming temple headaches about a month ago and I increased it to 20 mg. I have since reduced the dosage to 5mg, but am having a crash since Friday. Awful neck, shoulders and arm ache - and pins and needles, moving in any direction hurts. The arthritis stiffness in my finger joints in the morning is also worse. I seem to have tapered down too fast, past the minimum my body needs to control the inflammation. Thank goodness no hip ache or temple headaches so far.

I keep debating the pain in my head - what if the shoulder pain is rotator cuff related. No Rheumy has ever had my shoulders x-rayed. What if the neck, collar bone pain, pins and needles are to do with disc wear and tear. I am on sick leave since Friday and trying hard not to increase from 5mg, hoping that the pain settles and my body gets used to the 5mg dosage. Or am I being an idiot?

[PMRpro Ambassador]

If you were still on 10mg when you had a flare - why have you gone to 5mg already? Below 10mg the reduction rate should not be more than 1mg per MONTH. No wonder you are in pain - and it could be withdrawal as well as PMR flaring.

[DorsetLady PMRGCAuk volunteer]

You’ll excuse me if I don’t answer your question? I’ll just nod. 🙄🤦🏻‍♀️ and say - you need to get your symptoms back under control!

[SnazzyD]

Bear in mind that with GCA the first year is the most vulnerable time for having relapses. To have got to 5mg in 7 months is pretty optimistic, though I dare say some manage it occasionally. What you do need to do is carefully reduce to find the minimum dose to control your symptoms by not crashing through the buffers in the haste to get to the station. The risk of trying to be too hasty is that you get into a yo-yo situation which can be tricky to get out of. This is where you can’t pin point the ideal current dose and you can’t tell what symptoms are flare and what is your body screaming out in withdrawal. Have you been getting advice on these increases and drops?

[softekcom in reply to SnazzyD]

Yes, GP wanted me to reduce even more drastically.

[SnazzyD in reply to softekcom]

Why?

[softekcom in reply to SnazzyD]

Very conservative approach. He believes the 'cure' is worse than the disease. He thinks Pred causes far too much damage. I have also gained 15 kgs since Aug. Of course I would like to come off Pred, but for me it's a matter of getting through day to day, doing my job and keeping the roof over our heads. I'd love to stop the meds without having a flare and having to take sick leave like this.

[SnazzyD in reply to softekcom]

Oh dear, so unfettered inflammation that could go on to become GCA again is better? Also, the risk of aneurysms and stroke. I like that doc to walk a mile in your shoes. Weight gain can be countered by a very low carbohydrate diet. Many of us have been successful in either not gaining or losing weight and keeping blood sugars stable this way. Docs seem to see weight gain and diabetes as inevitable but it isn’t.

[borednow in reply to softekcom]

Change GP - this one clearly doesn't know what he/she is talking about. In my opinion, of course.

[softekcom]

Thank you for your kind and very restrained responses. 😅 I have just taken extra 5mg pred and am back in bed. I cannot believe the pain. Now i just have to stop worrying about my job and housework while i recover.

[softekcom]

Update 22/04/21

I had an online appointment with a Rheumatologist on Monday 19/04 and she suggested I go back to 15 mg right away. (I have no GCA symptoms now.) I did and two days later I am here, much better, sitting at my desk and hoping to get some work done. She seemed very clued in about PMR/GCA and advised that I stay on 15 mg for a month and then reduce by 1 mg per month. She has also referred me back to Kings College for some tests. Much better today in terms of pain, still very tired, feverish and hot, but very relieved.

Something I learnt from her was that though my ESR has been above the normal range for a long time (since 2011), it is not considered high for someone my age because of the formula used. (Age +10)/2.

Thanks All, for the advice and kindness!