Tapering and struggling

[CarysL]

Good morning PMR friends, grateful to your thoughts. Ive struggled with taper from 30mg to 12mg since August. I saw the rheumatologist Monday who has advised 40mg pred, very slow taper, possible support with other meds at later stage. To start again at 40mg is worrying me and wondered if anyone else gone down this road? Hope you all have a good, pain free day s

[jcohend]

I was down to 12 mg (started at 20mg) and after a extremely extenuate business trip I had a huge relapse and had to go back to 40mg ! i was desesperate but with the time I could taper it down again.

[CarysL in reply to jcohend]

Thank you for the reassurance that I am not alone.

[SusyTe]

Do you have GCA, Carys? Seems like a high dose to go up to if not.

[CarysL in reply to SusyTe]

I didn't think so , although some funny symptoms when down to 15mg......tingly scalp and left side of face, mild headache.

[Hidden]

You say you struggled with taper. In what way has this manifested itself? Just trying to understand why such big increase. Is it based on symptoms and/or bloods?

I have PMR and after 5 months of reducing from 15 to 8mg my symptoms and markers were worse and higher than at diagnosis. Rheumy raised to 15mg again and in June I was prescribed a steroid sparing agent (cellcept/mycophenolate). First 6 weeks were hard when the dose went from 250x2day to 1mgx2day. I can't identify any particular bad side effects apart from picking up bugs as it suppressed immune system like pred. I am down to 10mg again. Supposed to go 1mg a month but I am using DSNS approach. I suspect recent chest infection will raise CRP at least.

I am taking it day by day and I think everyone needs to research and gather info what additional drugs to pred are suggested and then decide if they will take them and how long they are prepared to "experiment" with them.

Good luck 🌻

[CarysL in reply to Hidden]

Thanks. I was getting pain and stiffness again in neck, shoulders, hips, thighs and particularly knees( which not classic but caused me major problems in beginning). Also, when down to 15mg I was getting mild headaches and tingling on left side of face and scalp. Before PMR diagnosis I already had pain in neck, upper and lower back-advanced multi level disc degeneration - also tendonitis and tears in shoulders etc, so wanted to distinguish this pain from PMR but soon realised it was a flare.

You are right, day by day is the only way, take care and good luck yourself x

[DorsetLady PMRGCAuk volunteer]

Hi CarysR,

As per your previous post and the responses, you’ve obviously reduced too quickly and having to work as well has hampered your recovery.

If you’ve only got PMR then the starting dose seems high, and the Rheumy then putting you back up to 40mg is a bit worrying. Perhaps the Rheumy is considering GCA? Or maybe because you haven’t been able to change your lifestyle you haven’t helped yourself. It is difficult to work with PMR I appreciate that, but you must learn to pace yourself or you will continue to have problems. As I’m sure someone must have said previously although you are taking Pred and that helps the inflammation caused by your underlying illness, it does nothing for the illness itself - that’s still there, and it’s serious!

I know I gave you a link to info for new patients - please read it through again. And this is a link to a slow taper which may also help, but to be blunt - you need to do your bit as well! If you do, that may mean you don’t need to add in another drug.

healthunlocked.com/pmrgcauk...

Good luck.

[CarysL in reply to DorsetLady]

Thank you, I am very grateful for your comments and honesty. X

[DorsetLady PMRGCAuk volunteer in reply to CarysL]

Sometimes it difficult to grasp the full implications of our illnesses at the outset-we’ve all been there, and a bit of straight talking, along with a lot of sympathy I add, is the only way to get the message across. You need to look after yourself - life is different. But you will get there in time.

Take care.

[PMRpro Ambassador]

I suspect the rheumatologist thinks he wants to clobber it on the head good and proper to start with - your GP did make a bit of a mess and it isn't unusual to find that if you are struggling after that sort of reduction it may be difficult to get things properly under control again. He saw your miraculous response to 30mg so is confident he isn't masking something by starting at 40mg. And he may suspect that there is an element of GCA affecting other arteries where 40mg WOULD be a normal starting dose. The biggest supporting evidence he may be getting it right is the "slow taper" - though what does he call a slow taper?

There is someone on the patient.info forum who had a similar experience and when it came to getting things under control again he really struggled. He was so bad he was in a wheelchair to see the rheumy and 20mg did nothing, nor did 25mg. OK, he only went to 30mg but every rheumy has their own ideas and the guy is now down to 10mg using the Dead Slow approach and never reducing if he has any PMR pain - ready for the skiing season (I kid you not!).

But as the others have said - YOU have to do YOUR bit and accept this is a new reality.

[CarysL]

Thanks again.....I am grateful fir tge support and you were right, I was warned of the roller coaster ride. X