Hi all, I wish I could say I was glad to be back but im sure you will all understand that im not.

I have had episodic clusters for 20 years and was diagnosed a few years ago, my cluster period is quite short and normally lasts around 14 days. I have been using sumatriptan and 02 with reasonable results. I have been virtually PF for around a year.

Last week the beast came back but the meds didnt work, neither did the red bull or the headbanging. I made appt with the doctor who prescribed me Prednisolone (60mg per day with a 5ml taper down every 2 days). The next day the beast didnt show his face and hasnt returned since.

Here comes the catch.

The day afterwards all my joints were severely aching and I dont mean a little bit sore, I am 37 and I could barely walk, I have never had any problems like this before and dont feel unwell apart from the pain, I rang Dr to ask if it was a possible side effect from the pred but he said it wasnt likely but drop pred to 30mg and continue with taper and to ring back in a couple of days if it had not improved.

Yesterday I rang back and demanded an appointment because my ankles literally feel broken and hollow, GP arranged for an Xray and bloods. Xray came back with no abnormalities, bloods came back with a few highs and vitamin D deficient but im not a doctor so I have no idea about most of them (I can scan the results in if it helps).

Has anybody else had a similar experience?

Was it prednisone or dexamethosone?
The latter is a stronger steroid,and while it did wonders for my clusters,
During the end of the taper I had horrible joint pain and swelling in my knees, wrists and elbows.
Doc said it was common side effect.
Your vitamin d was low you say?
Read up on Batchs' vitamin D regimen.
Has done wonders for many of us.

Esheel31 wrote on Oct 30^th, 2015 at 7:16pm:


Prednisilone is the one I am on, apparently its the same group as prednisone but its slightly different. I have read stories about the withdrawal phase causing pain in the joints and if that was the case I probably wouldnt be so concerned, however this all started with 2 days of starting the dosage and if anything the pain has got easier as the dosage has dropped.

I have read up a little on the D3 regimen and have started taking the D3 today, hopefully it will make a difference so I never have to consider the pred again.

Sorry I should have been clearer, I have started taking the Vitamin D3 prescribed by my GP not whats described in the regimen.

I would like to take on board all the information that has been provided and run it by my GP and go from there, I hope to get an emergency appt on Monday because things aren't really improving.