Split dose not working

[JEMOK]

Well it's 6.30 am & I've been up since 5 am again having had to somehow launch myself out of bed in absolute agony. My shoulders & tops of arms are frozen & so very painful & I am exhausted. I have tried splitting my dose but it has had no effect on nighttime/early morning pain & the pain barely subsides during the day too. I had a 5 minute phone appt with GP yesterday as I am just so exhausted but she has told me to just keep going & reduce from 10mg to 9 mg from Monday as per her schedule & she will speak to me after my Dexa Scan which is 3 weeks away! Any help with this unbearable pain will be so appreciated x

[Purpleazalia]

If I was feeling the way you're describing I definitely wouldn't be reducing my dose, I'd be going back to the last dose that was working for me...but I have the backing of my gp to do this. I don't think your gp understands PMR, is there another gp you can speak with?

[Kendrew]

Hi Jemok. I've just been reading through your previous few posts and noted that you only started pred in February. As mentioned previously, you're reduction is really quite rapid and I for one think your problems stemmed from initially reducing down to 10mgs too quickly. It's highly likely that you weren't ready to drop that low and that dose wasn't enough to keep the inflammation under control. If this is the case, then any further reductions will only make things worse.

It's so important that GP's recognise you can't just taper relentlessly and at speed.......and as PMRPro has previously said....this is a chronic condition requiring an individual approach to ensure it's managed as effectively as possible.

You shouldn't still be in so much pain and intuitively I feel you probably need to go back up to at least 12.5mg ...if not 15mg again....and then begin a much slower and steadier taper. I'm not a doctor, so you must discuss this with your GP or other medical practitioner first....... others with more experience may be along to advise you also.

Don't be afraid to question your GP's decisions though! It's your body and therefore your choice! You can say no!

[DorsetLady PMRGCAuk volunteer]

As others have said, too fast a reduction....and uninformed GP!

You need a higher dose, and a more informed doctor who is going to discuss rather than dictate.

They only way to relieve the symptoms is to be on the correct dose of Pred, and as Kendrew has said, I don’t think you have ever been given the time to let medication do what it’s meant to.

I know what I would do, but you do need to speak to your doctor (preferably F2F) and convince her that her protocols aren’t working, or find another one that has better knowledge, or is willing to learn about PMR.

Sorry, but there is no other way....

[Coggles]

I cannot believe that you are still suffering 2 months on. I know your doctor has reasons for wanting you to reduce quickly, but you do need to have a pain free life now!I really think you may need a serious chat with your doctor or change them altogether unfortunately.

You must be exhausted

[MrsNails]

Hi Jemok

The others have said exactly what l was thinking - you can’t reduce before you’ve got the pain settled.

I’m not a fan of ‘splitting the dose’ when newly diagnosed - mainly because you need an accurate picture to present to the the Prescribing Doctor (but not your GP by the sound of it)

What dose did you start on? And what kind of Taper gave you followed so far? Have you had your blood levels done before you started Pred &/or since you started tapering?

Sorry about the all the Questions.....

Kind Regards

MrsN

[PMRpro Ambassador]

Nothing to add to what has already been said - the ONLY thing that deals with the pain is enough pred. Unless you are on enough in the first place, splitting won't help. You need a different doctor who treats the patient in front of her, not a textbook image.

[JanetGarrettN in reply to PMRpro]

I am very sorry for what you are up against with your Dr. I wanted to share that after 3 Rheumatologists since diagnosis Oct. 2017 I had my visit in later April and heard these exact words come out of her mouth…" you are not trying to reduce to zero but to a dose low enough to control your symptoms." I actually broke out in my rendition of Hallelujah! I didn't think I'd ever find a doctor who subscribes to this logical thought. Keep looking and good luck.

[TheMoaningViolet]

Hi, you should ask your doctor why they proscribed Prednisolone in the first place. Mine did it in order to control inflammation and eliminate pain. Was this achieved in your case? Prednisolone has little impact on the underlying condition which will hopefully resolve itself with time (you could try help it along by looking after yourself), but in the meantime you want to stop the inflammation damaging your body and you want to live as pain-free life as possible. I hope you will persuade your doctor to give this more thought and help you get better. Good luck.

[piglette]

As the others say you are obviously on too low a dose. I assume the pred worked initially for you. I had a rheumatologist who wanted me to reduce to 10mg in micro seconds, I remember feeling like death. He totally ignored me and said he wanted me to reduce another 2.5mg in the next month. In my case I dumped him. Are you in a position to increase by 5mg for a week or so to see if you can hit the PMR over the head? As is suggested can you go to another GP? Doctors tend to think things are OK if you don’t go back to them and complain again and often again.

[ChrisinNam in reply to piglette]

I've learned over the years that many GPs don't take a lot of notice unless you jump up and down and wave your knickers in the air!!! Sometimes you just have to keep on complaining to get anywhere. Sad, but only too often true.

[piglette in reply to ChrisinNam]

Talking to friends who are doctors, they say that 40% of people are not diagnosed on the first visit so they may be fobbed off. The only reason they know there is a problem is that the patient comes back. This means we must always complain. A lot of people just do not sadly.

[PMRpro Ambassador in reply to piglette]

Hardly surprising with the 10 minute, one complaint only attitude ...

[Viv54]

Im guilty of trying to drop down the dose to quickly ! The clever people on here put me back on track , Dont worry about dropping , try taking slightly higher and really early in the morning ! Dont split it and see what happens. It helps me. Its your body , so dont be pushed trying to reduce when your just not ready.Best wishes Viv x

[Hildalew]

Can you change your GP?

[HeronNS]

I understand your doctor is concerned about the effect pred will have on your bones as you already have OP. You can actually counteract some of the pred bad effects through some dietary changes and, if you are able, some appropriate exercise. Have a look at my story which I'll link below, and perhaps you can find some ideas. You may not be able to reverse your situation, but I believe it is possible to stave off many bad effects from the pred. As for pred, there is no point taking it, and risking the side effects, if you aren't taking enough to deal with the problem at hand, the PMR pain. That's only giving you the worst of both worlds: no pain relief and the risk of further bone thinning. Deal with the pain and also do what you can to mitigate side effects of pred. Unfortunately doctors simply don't know enough. I hope yours can be educated to give you better care. Your ultimate total intake of pred will be lower if you are allowed to get the inflammation under control and then taper slowly enough that it doesn't flare up again. You should be able to manage PMR on a low dose, but only if it's properly under control at the beginning.

As you know, it's wise to be tactful, but direct, with the doctor, "What do you think of this?" "I'd like to try this method of tapering, what do you think?" "I'm in terrible pain. I'd like to increase my pred enough to get rid of all the pain and inflammation for (a few) weeks and then try this method of tapering.... Meanwhile I will be doing what I can to maintain my bones."

I was started at 15 mg for about 4 or 5 weeks, and was able to taper without incident or flares to 3 in about a year. During that year (and since) I behaved thus:

healthunlocked.com/pmrgcauk...

[1Unknown12]

The hare and the tortoise. Rushing things doesn't always work. Saying that for some people prednisolone doesn't always give the three day wonder feeling of feeling great again, so don't despair. Every one has already said your rushing things. So slow down take a deep breath and up the dose. You may just find it helps.