Between a rock and a hard place!!

[Prof99]

I was so delighted to report that I took my last Prednisolone on 28th April 2024 and wasn’t totally surprised that I experienced the usual ‘drop’ symptoms that I always got every time I reduced by even 0.5mg. But it has now been 4 and a half weeks and I wake in considerable pain every morning and the discomfort, which lasts right through until after lunch, is showing no signs of improving. In fact, I feel it is getting worse each day. I really don’t want to go back on Pred, but I also don’t want to spend all my mornings in pain – especially as I work mornings and it is impacting my work. I also have a holiday coming up at the end of May and I do not want this to be ruined by pain and reduced mobility.

I have put in a call to my Rhemy helpline – but may not hear from them for up to 5 days! – even then it will probably only be a Nurse that I get to speak to. My rhemy was quite ‘assertive’ about me getting off Pred. – but it isn’t his body that is hurting and I now feel I probably need to go back on Pred and remain on a low dose, which was obviously keeping all these symptoms at bay. (I am also on 20mg MTX but I am, once again, questioning what good that is doing for me to be in so much pain each day).

I was comfortable on 0.5mg, but after not taking it for 4.5 weeks – should I start again at a higher dose and then try to come down quickly to 1mg or even 0.5mg? Any guidance or advice is welcome, especially from someone who has had a similar experience. Thank you

[PMRpro Ambassador]

It is very very common - and we do say a lot that 1/2mg can be plenty - but zero is a step too far.

Use the flare protocol we talk about all the time - take 5mg until you feel fine. If it is under 10-14 days, drop straight down to 1mg if you are sure that 1mg was enough - depends how slowly you tapered that last mg really. If you are longer than that, drop to 2,5mg first.

[Prof99 in reply to PMRpro]

Thank you for your super prompt reply.

[DorsetLady PMRGCAuk volunteer]

For the record, totally agree with PMRpro..

[Prof99 in reply to DorsetLady]

Thank you

[Grammy80]

I sure can't tell you what to do....here is what I would do and I've been on pred five years and am a 1mg plus Actemra for GCA.

I,MP, would be taking .5 to 1mg from now until my 'personal sun' sets. One friend of mine took 1mg of pred for 22 years, that's what I would do.😉😉💞

[Prof99 in reply to Grammy80]

Thank you for your reply - I feel you are right. Also since stopping Pred I have an arthritic thumb, knee and foot - I feel the tiny dose of Pred was keeping that discomfort at bay too!

[Grammy80 in reply to Prof99]

I feel our mental attitude is such an important component of our physical well-being. If I could be comfortable at 1mg......I'd be on it...that will keep your attitude and approach up and running...nap when necessary, of course. Be good to yourself!!💞

[Prof99 in reply to Grammy80]

Thank you Grammy80 - sound advice.

[Scales]

I wouldn’t go back on it as it just becomes a circle then. I have been off 5 months and still have morning stiffness and after sitting a while but it’s not the same as PMR. I can get the range of movement but stiffness. It’s a dangerous drug, every time you go back on it you’d have to go through this process, which I am told can take 6 months to 2 years. I am getting better and some days are better than others. Try Panadol every other day as that works. Anything other than prednisone

[PMRpro Ambassador in reply to Scales]

It is not a "dangerous drug" - it is a life and sight safer and provides better QOL when you still have live PMR. Even paracetamol/Panadol has adverse effects when used all the time. Aches and pains after coming off pred are not unusual - but any that worsen steadily as Prof99 reports are not "just aches and pains", they are due to PMR and that only responds to pred. Paracetamol is very unlikely to wor and leaving it will have them right back where they started and needing a lot more pred.

[Scales in reply to PMRpro]

its a dangerous drug and should be taken only under guidance and including blood tests to see if your levels are up. Yes, it gives relief and yes I can’t take Panadol for more than a day, which is why I said every other day. I only ever take one at a time. Lots of people seem to just take it when they think they need to on this site but in Australia we have much stricter guidelines about the use of drugs such as this one. We are told never to come down quickly as stated by Prof as you can throw your body into all sorts of difficulty. I read this site to see people’s experiences but don’t follow what they do with drugs without doctors input. Up to you in the end.

[PMRpro Ambassador in reply to Scales]

I would never have got any if it depended on the blood markers - mine never were up. And if most people waited to get a blood test before sorting a flare out they would be in a wheelchair. In the UK it is often a 3 or 4 week wait for a telephone call.

[Scales in reply to PMRpro]

Mine didn’t go up initially. I wasn’t talking about flares. I was responding to their post about post-prednisilone and the stiffness in the body. That is not a flare, at least in my understanding. I imagine a flare is not just stiffness and aches but reduced flexibility. Eg not being able to lift your arms over your head or get out of bed without assistance, which was my PMR experience . In terms of blood tests I got the test request each month with the results so I didn’t have to ask for it and that continued for 3 months after I stopped. Perhaps have one in hand for these situations? I don’t know but maybe I just have a good GP. Never went to a specialist.

[PMRpro Ambassador in reply to Scales]

You are describing the effects of full-on whole body PMR. Many patients never have the shoulder problems but many doctors think you can't have PMR or GCA unless you demonstrate all the listed symptoms. If someone was doing fine on even a very low dose of pred that was enough to control the inflammation that causes the symptoms but then stops the pred altogether and after a month or two finds the symptoms that were typical of their PMR returning that is a clear sign the underlying autoimmune cause of the symptoms we call PMR is still active and causing a drip drip drip of inflammation. Like a dripping tap will eventually fill a bucket, this builds up over time causing increasing symptoms whic eventually can be as bad as it was originally and takes much more to get under control. It is far better not to let it get that far in the first place.

[Prof99 in reply to Scales]

Thank you for replying Scales. It is really good to get different view points. From your comments further down, it does sound like you have a fantastic GP. Mine avoid discussing it with me once I was under the Rheumy - who I only get to speak to (rarely see) once every six months if I am lucky!

[Essexgolfer]

I have had a similar experience and have to agree the PMRpro.

I reduced to zero on 1st November but the aches and pains started to build up leading to a full flare up in the first week of Jan (add in some gout, and I was in a real mess) Doctor recommended I start again on 2mg which I did for 2 weeks and very fortunately my Rhumy phoned and recommended that I go back to 5 and start again. I am reducing at 0.5 a month this time and currently on 4mg until 1st May and have just had my best month for a long time.

The forum has been a very informative source of information, which I check into regularly. Getting off of Pred is the goal of us all but I think some, myself included, may have to stick to a very slow taper or indeed a maintenance dose for a while

[DorsetLady PMRGCAuk volunteer in reply to Essexgolfer]

Not sure you really needed to go back to 5mg and start again. A couple of weeks at 5mg and then drop back to 2.5mg would probably have been ample… but if you’re happy with what you’ve done, fair do’s.

[PMRpro Ambassador in reply to DorsetLady]

Mind - says "have just had my best month for a long time", So maybe the 5mg was a good idea!

[Essexgolfer in reply to PMRpro]

Thank you both for your replies. Below 5mg seems to be my stumbling block. I was determinned to get off Pred but looking back below 5mg and it starts again, I try to stay on the dose I'm taking at the time so as not to yoyo but think I'm in for the long haul this time

[PMRpro Ambassador in reply to Essexgolfer]

It doesn't "start again", it never went away, But you obviously still need a bit more than you thought to keep it under control.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

True😊

[Prof99 in reply to Essexgolfer]

Thank you for replying Essexgolfer - it is great to hear from someone who has been through exactly the same thing.