Tearful Day today

Amycakes

I am the person referred to who 'clears the decks' for one week, before I take the drop.

But, it is easier for me to take the 'drop' as I have GCA and not PMR. But the withdrawal symptoms make me ache all over.

So, those of you who have PMR are in a double blind - is it withdrawal or is it the PMR?

However, as with all things, you know you best, listen to body and try and learn to go with the flow. And if you have to up the pred do so.

PMR has a mind of its own, it came when it wanted to and will go when it wants to.Pred is there to enable you to live as pain free as possible and until some other friendlier medication comes along - we are stuck.

Can I also ask, have you had a Vit D test, if you are deficient in Vit D, this deficiency also causes aches and pains, same as PMR.

Acid reflux, try MrsO's remedy, lemon juice in water three times a day. It works.

Oh Amycakes I'm so sorry coping with the steroids is causing you such grief There has been so much good advice here about reducing I won't add to it except to say that the way pred. effects us emotionally, especially on the higher dosage, can be a shock. People have \"highs\" as well as \"lows\" too. Most of us seem to have been busy coping people and it's not easy to come to terms with something that is so variable - my worst point came when I thought I was reducing successfully and then realised I, stupidly, had muddled up the pills -was taking 5 instead of 2.5! :oops: :cry: So not just disappointing but I felt so silly as well, losing my marbles!

You'll get there ..... today is another day! Green granny

Sorry I haven't posted earlier Amycakes, just to say that you've had so much good advice I have nothing to add other than a big hug (sorry, no emoticon, I'm on my iPhone and haven't figured out how to add the 'extra' ones!). I can only manage ! How are you feeling today? I've just done 'night duty' in the hospital with my Grandson and we actually got a few hours sleep! It will get better Amycakes. Take care.

Love from Lizzie

BettyE - personally, I think the last thing that should be looked for in a potential medical school candidate is 4 A*s! Yes, they need a certain academic ability, although a lot of what they have to do at medical school is learn - often by rote - but the primary qualities should be empathy and compassion. The way medicine is taught has removed a lot of the understanding of the holistic side of the profession. Once upon a time the med schools interviewed every single person - and I think it helped. And I also think that the concept of going straight from school to university is wrong - they need a bit more \"world\" about them. So do nurses - the ones who had another life first are very often the best.

EileenH

beev - this is so strange - I went straight to the second page and replied to Betty, wanting all the time to write beev. So I went back in and looked back along the thread and found your question!

That sounds like the hip pain I had with PMR - it too was worse on one side than the other though I did have it in both hip sockets at times. I'm sure it was bursitis - the same as housemaid's knee or tennis elbow - and is one of the presentations of PMR. The pain in the front of your thigh is typical of muscle soreness after repeated use as you say, but equally, that is typical of what PMR pain is due to. And the repeated use was one-sided because of the way you went down the steps, it would possibly have been less had you alternated the first leg down as you would with going down steps normally, not like a toddler!

You could try taking a higher dose of steroids for one or two days (say 10mg, 5mg, normal dose) and drop straight back down to your usual dose. That might hit the inflammation on the head. Google to find the treatments for bursitis, which probably do include ice and rest.

Hope it's better soon,

EileenH

Hello Beev

Just to 2nd Mrs O about the Physio At long last my knee has stopped hurting !! It had lasted well over a year and massage had helped but i had a real flare in Lanzarote at New Year and had to have a massage and I got this ice gell which was amazing

When I saw the Dr I asked about physio as my massages were £45 a time !! I saw an NHS pyhsio and they said my muscles in the back of my kneee were too strong for the front ones where I hadnt been walking propeerly so had lots of exercises to do On my follow up appt with different Physio I said I hobbled down stairs sideways and she watched me and said where I was throwing my foot to the side to compensate I was hurting my hip as well and I now wish I had seen someone sooner as I had made myself worse !! So your son is probably right

Hope you feel better soon

Mrs G

Hi Beev - know just what you mean about starting on something and then finding there's no way back so you just have to keep slogging on! That was a \"walk\" and a half

I echo the others about seeing a physio if it doesn't resolve itself with a bit of a rest. I did some Alexander technique with a physio a while back, all about using your body on both sides equally, if you see what I mean. She picked out that one of my legs was much stronger than the other; guess what? It's that I always sit with my right leg crossed over the left, hence the left is constantly supporting extra weight. Who'd have thought it :o She also said, which I knew, that legs crossed encourages varicose vein problems too.

All the best for a lovely Easter and legs feeling better!

Green granny

Hi

sorry to hear you are having problems reducing. I don't know why these drs think they can dictate how our bodies manage with reduction. I have a really good GP and has given me a free range. I drop 1mg a week. That means for the first week for one day of the week the next week 2 days of the week spaced out and so on I know it takes time but it far more comfortable. I have also found by splitting the dose to AM and PM I manage to get up in the morning with NO pain just stifness if I find things too bad I have an extra 1mg in the evening.

This week I am starting to drop to 8mg ( not bad from 40mgs last April even if I do say so myself) and feel good so far. I just tinkered a bit told my GP and he was happy for me to do so so long as I get down some how. But this way if it doesn't work the next day you are on the higher dose anyway

I now know when to drop down at a faster pace because I get a bit hyper and talk a lot!!

I hope that all makes sense

all the best

Koukla

Hello all

Thanks to Mrs O, Eileen, Green Granny, Mrs G, Betty E and all.

It felt a bit better when I got up this morning so went ahead and met a friend in Dorchester for lunch. Well, I dont know if it was driving or the walk around to decide on where to eat, but it was hurting more as I walked around (only about 20 mins). Then throbbed all down my leg as I had lunch and after lunch, I had to excuse myself and hobble painfully back to my car. Before now, it had not ached when sitting - only on standing and walking.

Have taken paracetamol as afraid of Ibuprofen and put ice pack on. I have also made an appointment with a very nice private physio for tomorrow morning. I also know her privately a bit so it helps.

He who took me on the fated walk 10 days ago has gone on another long coastal path walk while I had a day out with my friend!! What I didn't spend on clothes will be well spent on physio!!!

Beev :?

Hi again my friends , what would I do without your kind concerns & good advice.

Thank you all.

Today I took 25mg, & my ,do I feel much better, so thats it,

no more listening to docs, I am listening to my body,& woe betide any doc who interferes!

As you can see I am a newbie at this.

I also have G.C.A. , started on 50mg before xmas, so getting down to 25 now is good I think.

I have had no problems with the G.C.A. its the P.M.R. that causes most pain.

Anyway the mention of a blood test for vit.D, I have never been offered one & didnt know about it till joining this forum, so something else to ask the doc about.

I do take calcium & vit D supplement, but wonder if the dose is enough after reading more about it here.

As for blood test of E.S.R. my doc thinks they are a waste of time, because they dont always prove anything.

When I started all this my count was 38, it was pooh poohed, I was told if it was 100 & 38 then we would worry.

My Rhuemy who I no longer see, didnt pick up on my G.C.A. I told him about the headaches, blurred vision & loss of vision in one eye for a short time, maybe seconds.He reffered me to a Nuerologist who straight away said G.C.A. & P.M.R.And I paid for the Rhuemy!!

So again I must ask for a blood test for E.S.R. & C.P.R ,whatever the numbers come out as, I shall be on my guard.

Thank you all once again.

Amycakes.

Hello Amycakes

It does make you despair a bit when a Rheumy cant recognise PMR and GCA !!!!!!! A GP possibly not but a Rheumy !!!

When I started my 2nd bout of PMR ( I have just checked ) my ESR was 37 and my CRP 45 ) and my Dr had no hesitation in saying PMR again she also remembered ( and this was 6 years to the day !! since my first bout that my CRP is normally higher than my ESR !!!) She treats my blood results as personal to me If I am around 5 thats great if it goes into the teens no reduction and when they suddenly shot up to 24&27 after i had gone from 20mg to 4mg I was put up to 15mg until they were under control I feel lucky that my bloods do tell a story but I feel doubly glad my Dr treats me as an individual My Dr always passes me her pen so I can write down the results I really find it helps I think you are really going to have to treat yourself the way you are being looked after

Beev Pleased to hear you are seeing a Physio but sorry you are in pain I dont take Ibuprofen either but when I had a problem with my leg on holiday I bought some Ice Gel of the person who did the massage in Lanzarote and it has been great Made in Finland and I have managed to get some more of the Internet You have to wash your hands over and over again after you have put it on but I found if I used it 3 times a day it really helped Good luck with your leg tomorrow she should where there is pain is originating

Mrs G

Amycakes: yes, an ESR on its own doesn't necessarily prove anything but an ESR of 38 is borderline for consideration of PMR if there are other matching signs and symptoms.

I'm astounded at the rheumy's \"referral to a neurologist\" when you had complained of amaurosis fugax (the vision loss) as he should have had you in an ambo on the way to A&E or at least sent you straight there with someone else driving - apart from any other possible diagnosis it's a sign of stroke! :cry:

And again - if you are on calcium and vit D supplements you should have had those levels checked first before being put on them. The CRP is indicative of other things (including cardiovascular) as well as being a bit more specific (not raised for me though). And if they ever suggested alendronic acid the calcium and vit D MUST be done as it (AA) has no effect at all if they are low and they must be corrected first.

beev - take a taxi to the car next time! :oops: :lol: Have you tried applying for a disabled badge? PMR should be enough to allow one - although I know that some councils will die rather than hand them out.

Eileen

[quote:cdd5aec8de=\"Amycakes\"]Hi Everyone,

Dropped a couple of days ago from 25mg to 20 mg, not feeling so good these past few days, so thinking maybe Ive dropped too soon.

More leg weakness , more aches,& shaky, so think I should go back to 25mg again for maybe longer than the 2 weeks my doc wanted.

Very tearful & feeling so down.

A bit fed up to put it mildly.Sorry to be a pain, just need a big hug I guess.

Amycakes.[/quote:cdd5aec8de]

Amy I got dropped from 15 to 10 then had to go back to 15 then back to 10 then 7 and a half and back up to 10 I think i met myself coming back lol plus when I got my blood done this week it was high and also high blood pressureI also had a weepy week and feel silly sending you great big hugs

[b:f964273de0]Eileen[/b:f964273de0]

I have been fine until now. Even at the beginning of PMR I didnt have pain like this. Once I managed to stand up and get moving it wasnt too bad. I have even been doing energetic aerobics for the last few months!

I don't get it because I was feeling quite a bit better this morning - no problem getting out of bed. But this afternoon since Ive been home I havent known where to put myself. Have been doing alternate heat and ice and have overdosed a bit on the paracetamol. Not quite so bad now.

Why does this have to happen in the school holidays??!!

Thanks for all your help.

[b:f964273de0]Amycakes[/b:f964273de0]

My ESR was 37 at the beginning and they treated that as elevated, although I know some say that isnt elevated - seem to be different opinions about it. Since the steroids ESR has been below 20.

Beev

Amycakes wrote

\"I also have G.C.A. , started on 50mg before xmas, so getting down to 25 now is good I think. I have had no problems with the G.C.A.

Amycakes, I have GCA but not PMR.

I started on 60mg and it took me 8 months to get down to 20mg.

The CRP is a very good marker for GCA - so keep a record.

I also wonder, if you have seen an optician and got a base mark for the current state of your eyes. If you are located in the UK, now you have GCA you are entitled to two free eye tests a year, ie one every six months. The optician fills in the form.

Be aware, GCA does not have the pain of PMR, but is not to be dismissed,

if the CRP is elevated it could be the GCA playing up and then you would need an increase as GCA requires a higher dosage than PMR. CRP is used as a marker for GCA.ESR a marker for PMR. Keep a record of both so you know where you are.

MrsO has both and she will be a better guide than me.

Good Luck in the future.