Weaning from pred after 5 years from first GCA diagnosis and then PMR

[Ssratha]

I was put on 80mg of pred on diagnosis with biopsy of GCA. After 2 weeks started weaning 5mg a week, then 5mg a month to 20mg. Then weaning 1mg a month to 15mg. Then boom. Around 2 years on, PMR kicked in. Back up to 20mg. After couple flare up over last 3 years i was down to 5mg. Tried to go down to 4.5mg using a weaning method of going down 0.5mg first day of week only, 2nd week 2 days, 3rd week 3 days etc. Till new dose is everyday. Tried this twice. Symptoms flared up again. At the present i have tried rhis again and 3 weeks in all seems good. I have used homepathics to support the weaning process this time with good success. Little withdrawal symptom. I also used homeopathics to address initial side effects of pred with great succes. Oedema and reflux problems. My blood pressure went up last year so was put on 4mg prendropil. I am using qi gong specific movements to address bp and any residual stiffness.

Anyone got any hints on weaning after Long term ~ 5 years use? Am keen to get right off the meds.

Many thanks.

[DorsetLady PMRGCAuk volunteer]

Hi,

“ Am keen to get right off the meds.”- I'm sure everyone is- but to be honest so long as you still have the illness - you won’t.

The only way is to go as slowly as you can now you are on low doses - and hope your illness goes into remission by the time you get to zero - but there’s no guarantee!

It’s unfortunate that PMR came along2 years into your GCA,but it is what it is.

Once you get below 5mg and don’t have any symptoms or side effects - then just accept you will get to zero one day - but maybe not as quickly as you would like.

[Ssratha in reply to DorsetLady]

Thanks DorsetLady x

[Ssratha in reply to Ssratha]

On further thought, i believe it is the withdrawal effects from prend that fare up and not the PMR. this time around i am doing well, finfer. Croaswd. The withdrawal symptoms are Very similar to PMR from my experience.

[PMRpro Ambassador in reply to Ssratha]

That is a common effect when reducing the pred dose: any withdrawal symptoms tend to resemble the illness for which you are taking the pred. That is what makes it so difficult to distinguish one from the other and it is accepted by many that doctors fall into the trap of thinking it is a flare when it is simply the body reacting to the change in dose. The effects really can be minimised by using one or other of the slowed tapering approaches we talk about on the forum. And tapering is not the same as reducing - there is a subtle difference which top experts in the field of steroid use appreciate and many others don't.

[Ssratha in reply to PMRpro]

Thanks pmrpro.... What is the take between weaning and tapering

[PMRpro Ambassador in reply to Ssratha]

I didn't use the term weaning - apart from anything else weaning suggests you are replacing the substance you are aiming to discontinue with something else and that is not generally the case. In our language here at least, by reducing we mean an approach where you give a pre-planned course of a drug, starting high and progressing to a low dose before stopping altogether because that . In tapering you are reducing the starting dose in small steps to identify the lowest dose that gives the same result as the original starting dose - it is also termed titration of the drug. However, titration in almost all other medications is starting low and increasing to find the ideal dose but that doesn't work well in PMR, you might take months to get from a low to a higher dose that is adequate, so you start with a dose that is expected to be enough for most people and work down until pain break through. But you can't do that too quickly or in large steps or you miss the end point and risk getting into a yoyo game that makes things harder.

[Ssratha in reply to PMRpro]

Thanks, no you didnt mention weaning, I did, as that is what all the GPs here call it. That is why i asked the question. I have been on pred for 5 years and read a lot of different research on the drug and GCA and PMR, more than most doctors. Lol.

[PMRpro Ambassador in reply to Ssratha]

Most GPs fail to understand PMR and its limitations - don't really care what they call it as long as they put the patient at the centre. But as I say, weaning suggests a replacement - there isn't one.

[PMRpro Ambassador]

You may be keen to get off the pred - but if the underlying disease process is still active nothing you can do will get you off pred without a flare of symptoms.

Some people have PMR as a part of their GCA - I think it is about half of patients with GCA also have PMR symptoms. The PMR was hidden while you were on higher doses of pred, it doesn't need as high doses to manage the inflammation as GCA so only emerges once you get to the realms of PMR doses. Getting off pred for PMR is a lot slower than it often is for GCA - and even it lasts about 4-5 years for the majority.

When you flare at the same sort of dose more than twice it is your body telling you the PMR is still active and it needs the pred.

[Ssratha in reply to PMRpro]

Thanks PMRpro, one lives in hope

[Ssratha in reply to Ssratha]

On further thought, i believe it is the withdrawal effects from prend that fare up and not the PMR. this time around i am doing well, finngers crossed. The withdrawal symptoms are very similar to PMR from my experience.

[Ssratha in reply to Ssratha]

And its whether you can handle those.