Tapering down

[Canarylady]

Hi everyone,

Since late January I was put on 20mg of preds due to servere pain in my shoulders and neck,arms and legs,saw Rheumi at hospital and was told I had pmr,what a relief after being in so much pain and not knowing what had happened to me,ie couldn’t move one day or get out of bed!my question is ,my pain is coming back shoulders,neck my doctor says it should have settled down by now!on a lower dose!As some of you know I m working full time and finding the heavy work ,isn’t helping me get this under control,I m fine on 20 mg for the moment,but have doubled in size,thick neck,have swelling around my neck going down to my shoulders,bodybuilder!!haha.and funny eyes,very watery and sometimes difficult to see things,have had headache s too.triedness too.i m seeing my doctor tomorrow am to discuss what to do next,having read all your stories on tapering I think he s lowering my dose too soon.i m moving to another job on the 26th with less hrs and no heavy work.is it possible for me to ask my doctor that I want to stay on 20mg?i m afraid of staying on this dose but I want to get the pain under control as I m feeling desperate to improve my health and it’s getting me down,as I don t have the engergy to pack my stuff up ready to move.sorry to keep going on.I hope i m not wasting your time in my post.

Take care everyone

Ruth

[SheffieldJane]

All very relevant and your symptoms all very recognisable to me. Of course you are exhausted and overdoing things. Honestly taking Pred to keep overdoing things is not a good idea at all. It’s like taking a painkiller in order to keep hurting yourself.

I had the neck and eye symptoms too. The neck made me feel rather choked, it’s related to Cushings I think. It goes. I am glad you’ve got the prospect of lighter work at least. I hope you have the opportunity to pace yourself and build rests and naps into your day. A slow taper will help but only when the inflammation is allowed to subside. I would also be alert for GCA symptoms - headache, sore tongue, jaw claudication and those eye systems. This could be a further reason for you being stuck.

[Canarylady in reply to SheffieldJane]

Hi there,

Thank you so much for your help,I am abit worried about GCA moving in!and that’s why I need to get this dose right again,I shall talk to my doctor in the morning and ask to stay on 20 mg,I know with my move next week has put me under a lot of stress,so it’s not helping matters.

I have asked my neighbour if he will help me pack and he has he will,so I m so greatful I asked him.

I m hoping once in the new job and settled in the inflammation will subside and I can start to enjoy my new life by the sea.

When you say sore tongue,do you mean on the tongue or sides of tongue?

I have been getting on and off sore tongue on the left side but not actually on top of my tongue.

I also have sore top of head,had it for months now when I started getting leg discomfort last year!

Between my eyes if I press it hurts abit.

I even spoke to my hairdresser months ago about having a sore patch on the top of my head,she said it could be because I have my hair up,so didn’t think anymore about it.

Xx

[SheffieldJane in reply to Canarylady]

Honestly, anything sore around the tongue ought to be reported. I don’t have tongue symptoms but it was mentioned to me as an indicating symptom.

[Canarylady in reply to SheffieldJane]

Thank you for that,will try and discuss with my doctor in the morning and let you know,I took my preds at 5 am this morning,but now am having problems with my eyes,and more so the right one again!?

Xx

[PMRpro Ambassador in reply to Canarylady]

What sort of eye problems?

[Canarylady in reply to PMRpro]

It’s in my right eye,the eye it’s self feels strange,keep having to blink and rub it to get the blurring to go.

Saw doc this am,didn’t seem interested.

Also hospital have really messed up my notes.the specialist registrar in Rheumatology says I don t have pmr but possibly fibromyalgia,my doctor says no I have pmr and I agree with him and my treatment with him.

And that I should stop taking my preds!!

And wants me to go on duloxetine??

Staring dose of 30mg and if no improvement go up to 90mg after a 2 week interval.

She says all my bloods came back neg.

I don t know what to think now,I m getting more pain in my legs and neck,it’s very depressing.

[PMRpro Ambassador in reply to Canarylady]

Did pred improve the pain? Are ESR and CRP raised? If you can say yes to those questions - the likelihood of it being fibro are minimal - although you CAN have both.

Will you be able to change doctors when you move? GP obviously - but also the rheumy? Might be worth a post asking for recommendations for a GP who "gets" PMR in your new area.

[Canarylady in reply to PMRpro]

Yes pred has emproved my life,I couldn’t move before I took it,it was amazing.

She is saying that ear up a tiny bit but everything else was negative?

Yes I m able to change doctors and will get an appointment made ASAP when I register with new doc next week.

Just feel gutted.

I don t want to go though all this terrible pain again,

Will post for recommendations this evening after work.

Many thanks again

[PMRpro Ambassador in reply to Canarylady]

Make sure you emphasise that pred relieves the pain - that is the biggest difference between PMR and fibromyalgia. My ESR and CRP were never raised - it happens in about 1 in 5 patients. It doesn't mean it isn't raised for YOU though. Hovering about 20 is in the normal range - but if your personal ESR is about 4 like mine - it is pretty high for you.

Do try and contact your "neighbours" for recommendations though.

[Canarylady in reply to PMRpro]

Thank you so much,I feel abit better now having your support,yes I will tell the new doctor and Rheumi when I get an appointment ASAP.

My doctor said to do it ASAP as there will be a back log of people wanting an appointment at the hospital.

I am going to go back up to 20mg as from tomorrow as my legs are getting worse day by day now,neck also.

Once again thank you

And it’s so nice to have you there for us all.

[SnazzyD]

Hello again. Such a relief to hear you are moving to better work conditions; your current situation is totally unsustainable. What about asking the doc to stay on 20mg until you move and settle? I assume they know your situation? Do keep an eye on those headaches and any other head symptoms in case GCA is wanting to join in. The face and back shape is par for the course but very low carb and low salt diet is really needed now.

[Canarylady in reply to SnazzyD]

Hello there,

Lovely to hear from you too.

Hope your keeping fit and well.

Thank you for all the information about staying on 20mg,that’s what I feel comfortable at,but he s put me down to 15 mg again,so back came leg pain shoulder pain and the neck again,legs are feeling weak again if I have to walk up a hill!

I will be starting a low salt and carb diet next week,I just need to find things I can and like to eat,as I love my carbs!!

Not good for me right now.

Do you have any idea s on a nice diet?

I know everyone’s different in what they like to eat.

In this new job I m in Worthing so I m hoping I can pick up some nice fish etc..

Also they say I should cut out potatoes,it’s the one thing I really enjoy.

Take care

X

[PMRpro Ambassador in reply to Canarylady]

I suspect you may also find some local friends off the forum!

[Canarylady in reply to PMRpro]

That would be great to meet new friends with the same condition as myself,as moving to a new area I won t know anyone there.

[PMRpro Ambassador in reply to Canarylady]

When you are ready, put up a post asking if anyone would like to be in touch - not so easy just yet as many are shielding but normal service will return eventually!

[Canarylady in reply to PMRpro]

Yes I will,thank you so much for all your help and support it’s very much appreciated

[PMRpro Ambassador in reply to Canarylady]

That is why we are here

[Canarylady in reply to PMRpro]

Big thank you

[Hidden]

Hi... can’t offer any advice as not qualified can only tell you my story. On 20mg I’m like a new man... I am to drop my 1mg a month after 6 weeks. I know from past experience that as soon as I get to around 10mg pains come back and when down to 5mg I might as well not be taking it. At the mo I was told to reduce dosage because of virus but speaking to others on here seems this advice could be not well aupported

[Hidden in reply to Hidden]

It's not supported by the latest advice by rheumys....not just here.

[PMRpro Ambassador in reply to Hidden]

Who told you that and why? The advice from rheumatologists is that patients whould continue taking their medication as normal - not try to force a reduction for the sake of it. That will achieve nothing for most people. It is a different matter if you are taking pred for a short course - but pred is the medication for PMR and GCA. Stopping taking pred for PMR will leave you in pain and disabled again and increases the risk of GCA developing because the PMR is unmanaged.

[Hidden in reply to PMRpro]

My rheum consultant told me that a 5mg dosage would be a safe dose!!

[PMRpro Ambassador in reply to Hidden]

Very possibly - but does it control the PMR inflammation and stop the symptoms?

[Hidden in reply to PMRpro]

No.... pains come back

[PMRpro Ambassador in reply to Hidden]

Exactly - so it has let the inflammation increase and also increased the possibility that it could progress to GCA when you would need much much higher doses of pred. Luckily that is only a 1 in 6 chance - but it does happen.

You need enough pred - or it isn't worth taking any.

[PMRpro Ambassador]

I can't find what dose you are on now? You were on 20mg - how far did the doctor tell you to drop? I would ask to stay at 20mg until you get to the new job - because that is probably half the problem with you having to do heavy work. And then reduce only 1mg at a time, preferably using one of the slpw approaches.

So pleased you have a better job option - do you have to move far? And do try to cut the carbs - that will also help the inflammation and may help with reducing the pred.

[Canarylady in reply to PMRpro]

Hi there,I m currently on 15mg,started with leg pain a few days ago then it’s just got worse over a few days,neck is getting bad again.

I will ask doctor about staying on 20 mg until I get settled down in my new job and then start to taper down once I m comfortable again.

I wanted to do 20mg for a month,then 15 mg a month and work my way down that way,and see how I progress.

Thank you so much for all your support.

Ruth

[PMRpro Ambassador in reply to Canarylady]

Do consider 17.5mg on the way down. No reduction should really be more than 10% of the current dose - and 5mg at that stage is 25%!

Have you to move far?

[Canarylady in reply to PMRpro]

Thank you for that ,I shall definitely do that,that sounds much better.

I m moving from Wiltshire to Worthing.

Being by the sea will help me a lot as I m from Thanet in Kent and love being by the sea,I will start to walk again along the promenade then build up to the coastal paths.

[PMRpro Ambassador in reply to Canarylady]

There are quite a few in that area - and a real support group if you fancy that.

pmrgca.co.uk/groups/

[Canarylady in reply to PMRpro]

That’s great,yes I really fancy meeting up with a support group,thank you so much

[Canarylady in reply to Canarylady]

I ve just emailed the Worthing group about joining them.

Thank you so much for the link