Flare up: Two days ago I started with sciatic pain... - PMRGCAuk

PMRGCAuk

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Flare up

AnniesRyder5
AnniesRyder5

Two days ago I started with sciatic pain on one side, but today the pain in both knees is really bad. I tried to get a GP appointment, JOKE!

So I’ve decided to increase my pred dosage by 5mg on top of the 7mg I had got down to.

This is the 3rd time I’ve had to go back up in a year.

It’s just so frustrating that COVID or not I can’t get a GP appointment so I can at least get confirmation or otherwise that I’m self prescribing correctly

I appreciate that I’m not unique , I’m just sharing 😞

48 Replies
PMRpro
PMRproAmbassador

"This is the 3rd time I’ve had to go back up in a year."

Always at a similar dose?

AnniesRyder5
AnniesRyder5 in reply to PMRpro

I just looked it up in my diary but I managed to have got rid of last year’s pages and I think I got down to 5 in November and added an extra 5mg Then started reducing again to 9mg. 8 in December, 7 January. I took 7 mg this morning and another 5 mg just now.

PMRpro
PMRproAmbassador in reply to AnniesRyder5

You may be overreacting - sometimes adding 5mg for a week or so is enough and you can go back to the last dose you were good at. When you have problems at similar dose it is your body telling you have got to where you want to be - the lowest dose that gives the same result as the starting dose did. How do you go about reducing?

AnniesRyder5
AnniesRyder5 in reply to PMRpro

I’m planning to take an extra 5mg for 5 days then go back to 7mg. Is that what you think?

PMRpro
PMRproAmbassador in reply to AnniesRyder5

Ah yes - that was what I was meaning. Not sure I'd go straight back to 7mg if that was where you flared - I'd go via 8mg. Do you reduce 1mg at a time or 1/2mg? And from every day one dose to every day the new lower dose straight off?

AnniesRyder5
AnniesRyder5 in reply to PMRpro

How do you get a half tablet ? I’m not sure my fingers could manage to halve a 1mg.Once again I appreciate your advice. The 8mg level sounds sensible.

PMRpro
PMRproAmbassador in reply to AnniesRyder5

Pill cutters do a pretty good job - available at the chemist or online.It is possible (in the UK at least) to get 2.5mg tablets in both plain pred and enteric coated. If you can't get them, it is often easier to cut a 5mg and make up the dose with 1mg tablets but 7.5mg is easy with 5mg plus half a 5mg. Absolute accuracy isn't important.

AnniesRyder5
AnniesRyder5 in reply to PMRpro

Now why didn’t I think of that?

PMRpro
PMRproAmbassador in reply to AnniesRyder5

Most people don't ... Not just you ;)

I've always managed to cut my tablets using my very sharp nail scissors.😂

I tried that once and spent a day looking for the half that flew away! The pill cutter was £1.99 and should have been where I started. Fortunately I had learnt from the forum not to cut enteric coated tabs.

Are you saying they are refusing to give you any sort of appointment or offer you any sort of medicine to alleviate the pain?

I can’t even get through to the surgery. There are no GP appointments on line and no- one answers the phone.

I email mine with the problem which they deal with and answer within 2 hours, if only to give a reply or say the will ring later in the day....is that possible for you?...

No email facility either!

Sorry, I thought by going online you might be able to....so frustrating.....hope you get through tomorrow.....not good enough

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to AnniesRyder5

Not even eConsult? Check either surgery website or here to see if yours has facility - econsult.net/nhs-patients

Thanks for that I looked it up and guess what! E consult not available

DorsetLady
DorsetLadyPMRGCAuk volunteer in reply to AnniesRyder5

Oh dear...surgery not in the 21st century then!

Have you tried the surgery at different times? My surgery can take ages to answer and don't seem to answer at all after 4pm. I have to just persevere.

You’re right that you can get through later in the day and then they tell you to ring at 8-30 the next day for an appointment

Just emailed my sugery, feeling so ill, may be Methotrexate, or worst flare for years!...rang MT X nurse yesterday she said try to bring forward your next week's appointment forblood test......they just replied within 20 mins, seeing me tomorrow.....I am very grateful, though I don't really want to go to the surgery!.....if one surgery can do it, why not another. Hope you have more joy today....

Thank you , you’re fortunate.

Yes, I am grateful..thought of you when they replied. Keep us posted how things go..

Hi Can you do a e consult

Just complete on line form and thay will email you or phone

I had to do the same increase from 7 up to 12 and just wanted to confirm I had to increase

AnniesRyder5
AnniesRyder5 in reply to Rose54

This health centre does not have any modern form of contact. Just the phone ! Yet it serves a population of about 10,000

Rose54
Rose54 in reply to AnniesRyder5

That's a shame

I recently added 5mg for a week to go to 8 from 3mg and then dropped to 3.5 for a week. Will go back to 3mg tomorrow. So far all ok.

hi annie, sorry to hear u r in such pain, and of this frustrating situ, we r so fortunate 2 have advice on this forum till we get professional advice. does not look like u can change the system anytime soon. makes u feel u want to move somewhere to get proper support especially as we get older and our need is greater, anyway thankyou for sharing annie lets us all vent and that helps too. sorry all lower case but right neck shoulder joint agony to type.. hugs, polly.

Hi PollyWe moved here about 2 years ago , into a Mcarthy stone apartment. The apartment is great as is the surrounding area of Oakham but You’re right that I should have checked out the health scenario.

I really appreciate this forum. I’m not sure how I could have coped without it.

I sympathise with you and your right shoulder joint. Mine is rubbish. Even after several repairs, and eventually put forward for a prosthetic shoulder which I turned down

Are there apartments nearby so you can ask if they go to a different surgery.....and me being very direct these days..(must be my age!)....ask them when you do get t hrough, what has happened to the system, and what can you do to contact them sooner in future....

Has extra Pred. helped?I had sciatica 12 years ago after a stint of new granny duties. It took 6 weeks to go. I seem to remember a set of stretching out exercises helping. In the absence of a physiotherapist, I think you can find them by googling. The trouble is all the adaptive movements set off other things like knees. I ring my doctor every two seconds until I get through - it seems to work - as soon as they open.

u r marvellous. wat grt advice from a fellow granny sufferer. my friend tony had crippling sciatic spine and used to hang (by his hands) from the door frame to let the weight of his body stretch his spine and release trapped sciatic nerves.... not recommended! don't think my door frames would stand up to the strain. yes i repeat dial my dr surgery 08.30 100 times to get to recorded message stating i am 15 in the queue to finally get a human being 15 mins later to be told all morn appoints taken and try again at 12.30 for pm appoints... such fun when yr feelin rubbish, but such is life, we can't change the system but we can change how we deal with it and this forum is a great stress reliever. take care Jane and thanks for sharin, sorry about typing, neck shoulder pain. this too shall pass ... granny polly.

It is interesting that your friend was hanging by his hands from the door frame. I remember hanging by my hands from the top of a door when I had sciatica. I didn't know what I was doing because I think I was delirious at the time. My wife had to talk me into letting go of the door because I was convinced that I would die if I let go.

omgoodness you poor thing, such excruciating agony drives people to find relief in extraordinary places. glad u (and the door) survived. best wishes, polly.

Sounds like you're doing right to me.Be prepared to go higher than that though...your own comfort is paramount !

Thanks Jim I read your previous post and I’m envious that you have such a good GP

I had a blood test over 1 year ago which was when PMR was first diagnosed. Since then I’ve had 2 telephone consults when I was worried about the return of symptoms😒

I am lucky I know with my GP. I see him roughly every 6 weeks, but have had phone appointments last couple of times. I have been allowed to self medicate to a certain extent as well , but he does get a bit jittery at anything above 15mg. Could be my age thst is making him lenient.Don't you have a blood test a week or so before any appointment ?

Hi Jim I’ve had 1 blood test in 12 months!

Don't know how but you have to start banging the table about this. you can't treat PMR like that. First thing is get on to one of the internet sites for medication . Ask surgery if they use Patient Access, it's the best thing I've done. Allows you to take control of your meds and keep track of your appointments. (to an extent)If no luck yuo have to complain, your life must be intolerable like that.

I would go to A & E if you're in trouble next time get sorted there , that may even get the ball rolling for proper treatment because they obviously do not know what they are doing. Don't worry about rocking the boat, this is your right to be treated by NHS.

Thanks JimA different doctor rang me this morning

She definitely seemed to know her stuff and actually undertook to contact me at the beginning of March so I have some continuity

However she saw in my notes that I was supposed to have been prescribed Alendronic acid some months back which was missed!

I am currently taking an extra 5mg on top of the 7mg I had tapered down to for 5 days then stick at 10mg

She has advised me to only reduce by 1 mg every 6 weeks

However she didn’t think a blood test would be helpful given that the pred is suppressing the inflammation anyway

Anyway Jim I have looked up the effects of taking pred long term

Am I missing something because they don’t look so serious?

Do you know?

Thanks

Ann

We can only phone between 8 and 10. I did that yesterday because I hadn't realised I was out of Preds when I ordered pills - they come through the post - and my pills. Post hadn't delivered and I had missed a dose and would be missing another. I did have a breathing problem and got to SEE a doctor. Told her about the pills and she gave me 10mg. IF mine don't come today I can phone the dispensary at the doctors...she will alert them. Today I have stiff painful shoulders, arms hands and a swollen left hand. I will take an extra 5mg boost when they arrive. Sad really I was supposed to start reducing from 10 to 9.5 this week. My own fault :(

We, like most patients don't get our pills at the doctor's...not sure who qualifies to do so.

We are so lucky with our doctors and she was pleased to learn about this site.

It’s my lucky dayI can have a phone consult sometime tomorrow but not with the doctor I’ve spoken to before

Fingers crossed I get somewhere - like a blood test!

I shall report back tomorrow

Thank you everyone x

Good luck Annie - I was pretty appalled to hear the level of service you were getting at your GP surgery - quite pathetic. Hoping it went well when you finally had the teleconsult...

Thank you It was ok ish

She told me that the GP who had given me my previous phone consultation a few months previously had noted I should take alendronic acid once per week but hadn’t actually prescribed it!

She has since prescribed it and advised me to stay on 10mg per week for 6-8 weeks

Apparently a blood test is not advised while the steroids are disguising the inflammation

Reading the advice note for the A acid is quite daunting though

I have oesophageal issues anyway ——-

She is right about the blood test - apparently can be misleading. Better to be guided by how you feel. I take the A acid weekly and have no side effects from it. I preferred to take that rather than the ....prazole my GP had recommended to protect my stomach from the Pred - cos I did not have - and so far do not have - any gastric issues. Maybe try and insist on a DEXA scan before u embark on it...at least it would give you some idea as to whether you were at risk of osteo problems.

Sorry to hear you're in such pain. I'm not insensitive to how you're feeling, however, have you considered trying other things to treat the pain?

As a few others have commented, I too have occasional sciatic pain and arthritic knee problems, in addition to low back pain flare ups from spinal compression. In these situations, I go to heat or ice treatments, rest or exercise, whichever the situation seems to demand, and either Tylenol (acetaminophen) or the occasional hit of 800 mg of ibuprofen.

The only pain that may result in my resorting to an increase in prednisone up to this time (other than my typical PMR flare symptoms) is hip pain, but only when it isn't resolved by the above measures and I have to accept that it's likely a flare.

We have to deal with so many issues in our golden years, but not all of them relate to PMR.

Hope you get some relief soon.

Well done. Fingers crossed for the consult.

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