What to do , can any one tell me what they would do please

Think you . Have taken your advise and asked for a reduction plan

I have never truly been free of shoulder neck pain .It took 3 weeks for the first dose of pred to reduce the pain to an almost forgettable level . Some days would be exalent and other days would be back some time mildly or sometimes quite bad , however my doctor kept expressing the need for me to be down to 8 or 8.5 by June July just gone . However the raised inflammation levels have been all over the place and when I spoke to a different doctor she reckons that I had a flare ,so that's why she put me to 15 mg ,I had told her that I only drop .5 mg as that appears to work easier but still have never been completely free of pain throughout . But has been so bad this time after going from 15 to 10 mg I though I would try again But am willing to try a drop to 12.5 . How long would you put your self on the 15 mg I wondered If 5 days would be ok .I have never felt so free of any thing when I tried 15 mg 4 weeks ago and so am very disapointed with my self now . Thank you for you help Carol

Carol, it sounds as though you have got yourself into a yo-yoing situation with the Pred and that always seems to create problems for future reductions.

On the other hand, I know you love gardening and I wonder if you are aggravating the shoulder/neck pain by overdoing the gardening especially during a few days around your reductions.  You mention some days would be excellent and other days would be bad - perhaps those bad days are due to you overdoing things on the good ones.  The more physical work you do, the more steroids you will find you need, and you will take longer to reduce down through the doses.

It is very rare for any of us to feel "completely free of pain throughout" - that only applies to a few very lucky people - it certainly didn't apply to me or many others I'm in touch with. 

If you have already today gone back to 15mg, then you need to remain there for at least a week or until your symptoms have responded as previously, and then because of all the previous yo-yoing of the doses, if it was me, I would just try 14mg in the first instance.  If that works after a week, then try 13mg, and so on, stopping for a longer pause when you rech 10, BUT at the same time resting that neck and shoulders from the physical gardening work to give the Pred every chance to do their job.

I actually have had a steady drop at .5 mg pred but the doctor kept pushing me to reduce when the blood test results were all over the place . I was down to 9.5 mg .However because I was in so much pain , really couldn't turn or bend my head the other doctor put me up to 15 mg with the drop to 10 mg in 3 days . Anyway have done what you sujested and now taking 12.5 mg for a week or two as we go away soon then start the slow reduction again . Thank you so much for your help hope you are keeping ok Carol

Where are you off to?

It sounds as though you have another Dr who isn't at all familiar with the need to go slowly with steroid reductions for PMR.  The fast reductions he is recommending are alright for other illnesses such as when prescribed for asthma attacks, infections, etc, but it doesn't work for PMR.

If the 12.5mg dose proves successful, stay on it for a good couple of weeks before continuing on your slow reduction process again.  If not, then don't hesitate to return to 15mg.  If your holiday is very soon and you are planning an active one, then it might be wise to postpone any reductions until you get back.  Good luck, and have a lovely holiday.

We are going to Ludlow we use to camp in a tent . Then when my husband was diagnosed with myeloma 5 years ago . After his successful stem cell trance plant we thought we would make life a little easier and bought a camper , which was to small , only our poor border collie had to try to sleep by the peddles . We have now got a caravan , which I love . It's like taking ,home ,with you . We haven't been to Shropshire before so hope it will be good . The upside of this pmr is that I pack less food etc so we have to eat out more .I am going to join Sliming world when I get back , have put on half stone since the start last nov. but really could do with loosing a stone and half . My daughter has got fibromyalgia and has lost 6 pound over the last 4 week so fingers crossed . Wondering if anyone else had tried it ? Carol

Ludlow was just a name to me, so I looked it up.  Sounds interesting, as long as you can walk!?!

Don't know Shropshire either.  We've lived in Durham, Oxford, London, Bristol, Somerset and our last place of residence was the Cotswolds.  Now in Germany.

We bought a motor boat when we left for Germany, we just loved the Norfolk Broads and we wanted something of our own to come over to England when we wanted to.

Have a great holiday.  Hope the weather keeps fine for you.

Regards fr C. 💐

Hope you have a wonderful holiday.If you goto slimming world do let us know how you get on and if it is compatible with par.I had to come off steroids partly because of the weight gain (just over 2 stone)but post heart attack last year need to really lose just under 9 stone.Since stopping pared have so far lost 10 lbs but it is slow going.Felt a tad nauseous after first methotrexate dose so that may help but not an ideal way for weight loss

Well if you like the broads you will find Norfolk generally good as mostly flat.A lot of the nature reserves are good having plenty of seats/benches.I make great use of them when husband has days off work.Mind you my trusty walking stick is also a boon.First started needing one when 50 but at 57 now have got over embarrassment and used to sprightly pensioners and snail's passing me LOL

The problem of pmr being in my neck shoulders , which sounds daft I know is that I could walk miles but gradually I found walking very tiring about a year before diagnosis . Have always had problem with neuralgia on left side of head and thought pain which was similar on right side ran down to my hand was reslated to my job of being a draughts woman many years ago when we worked on great big drawing boards . Anyhow these pains became worse after walking until I stopped walking so far . I think that the pound of the heel on the ground (I have got a decent trainer ) just aggravates the PMR . I love craft . Wall hangings patchwork and painting also gardening but unfortunately end up sitting reading because of the shooting pains through shoulders and neck very frustrating .

We go to the Cotswold a lot , stay mainly in Broadway . It is a beautiful county . I would love to live in Hay On Wye but it's to far from my son and daughter .

We all live in Hertfordshire . Which although we live in the country part , the roads are now horendasly busiest We want to go on the broads one day .Sometimes .(We stay Suffolk a lot ) we promise ourselves a run up there . I have never been . Hope the days are kind to you on you PMR journey you sound as though you have been a horendas time 🙀 🚣 take care Carol🎨

Hi Carol,thanks for your kind wishes.Have been on this journey on and off for 12 years since diagnosis but well you just have to get on with the life dealt to you and count your blessings.I visit a friend every week who is housebound with MS and I always give thanks that I am still able to get out.Like most PAR sufferers though I go mad on good days then suffer for days after-I just never learn

Don't visit Norfolk anymore (too old, sold the boat).

I have had PMR for well over 3 1/2 years and have used and NEEDED, sticks, crutches, rollator (or walker, whatever it is called in England) and wheelchair.  The only one I use now is?   The rollator!  With stick, crutches I walked bent, like an old woman (heavens, I'm only 76)!  Now I walk straight at my own pace.  My husband says "I wonder what people think when they see you bowling  along"!!!

Anyway enjoy your w-stick.  I'm never embarrassed when using the walker and people are so kind.

We lived near South Cerney.  Loads of lakes and splendid countryside.  We nearly bought a flat in Broadway, a lovely little town.  

Yes I agree people are so kind.Since I also went grey prematurely I have lost count of how many times bus drivers have offered me pensioner fares.I still got 10 yrs to go but have stopped being offended and just smile. Hubby says I should take them but if an inspector got on sure he would get in trouble which I would not want to happen.

That is why I tried Bowen Therapy and it worked.  I now walk without any support at all. 

Have tried to find a Bowen specialist near Soest, but haven't come up with one.  The Germans don't seem to have heard of Bowen Therapy.

I have to amend that.  Have just found another site and it has hundreds of addresses in Germany, even one near me, only 24 Kms away.  I will certainly be getting in touch with them.  I've never heard of it not helping anyone.

Great, give it a whirl, if it does not work with the consecutive, three weekly one hour sessions, then they will tell you.

By the way!  I think Eileen mentioned you live in Gateshead. I was in Newcastle with one of my groups about three years ago - never realized it was so pleasant, especially down by the river!

My step mother and half sister both live in a seaside town called Seaton Carew, do you know it?

I am afraid Bowen technique did not help me which was really sad as so many people had spoken so highly of it. It may have been the therapist who thought she was the bee's knees!!

Yes and it not so far, we used to visit that part of the coast often and especially when on the way to British West Hartlepool, the place where they hung a monkey as a spy.

Haven't been there for sometime, had to give up driving.

If you ever get up to Newcastle again let me know, then we can meet up for a coffee or if we have a support group meeting on that day, then you came come and meet the every growing gang of members.

I had tried reflexology which other people had found helped, it did not help me at all.

We are all different, hope you only had the three sessions.

I haven't tried reflexology yet, although I like having my feet played with! A friend of mine had it and she said it made her paranoid about what was wrong with her. I am trying acupuncture in a couple of weeks time as a trial.

Good Luck with the acupuncture, it works for some, but did not for me.

Have been thinking of trying the Bowen tequnique but don't want to upset the apple cart ( so to speak ) however a lot of people seem to have success with it . I have pain in neck and shoulder which agrivete the   Neuralgia . Is it mainly for back and legs or do you think it could helpme . I have found therapist in Wewyn Garden Citty which isn't far from me .Are they accredited by any group is there any qualifications I should look for . Sorry looks like I am setting out GCSEs exams .I guess I am worried about it makin things worse Carol

I try and have Accupuncture once a month it helps with relaxation which eases the symptoms of PMR but it's very well worth a go .Have had several types .The one I am having at the moment is Vietnamise ,which really is the only one that has reLly worked . Good luck 

It will be interesting how I get on with the acupuncture. My mother said it was a waste of time when she had it done. Oh well, can but try.

Yes they are accredited, just google Bowen Therapy founder of and read up on it.

The best thing about Bowen is that you book for three, once a week hourly sessions and if there is no improvement, it is not going to work for you.  Best money I ever spent.  Do not ask me how it works, I call it 'white witchcraft' and it is the most gently therapy I have ever had in my life.  Just remember to drink lots of water which they will tell you to do.

I am back . You have all been so helpfull in the past , that I yearn for more advise .

Had a talk for over an hour with a neurologist on Friday he had decided that I am now suffering migraines instead of neuralgia . Which I can relate to , because 2 months into this trip of PMR the pain did change from being brought on by cold etc to starting with ache in neck just below my scull then ripping into the L or R side of face .

He however queries the fact that I may not have PMR . Because my response ( he said ) was slower than he would have expected . It took about 3 weeks in all . 2 to 3 days was better but positively good by week 3 after 15 mg prefer .

Tomorrow I am seeing my doctor . Now I am on the 12 . 5 mg pred which I will stick at until I come back from my holiday ( Mrs O always has good advice ) tonight I am back to square one . The reason I saw the doctor in the fist place . Pain in left shoulder runing down outer arm to elbow . And unfortunately canot move head onto left shoulder because on stiffness in right side . My shoulers Pop when I shrug , a positive reliefe when it does and also in bend of neck . Does this sound like bursitis to you . Absolutely fed up as even neurologist didn't think that I needed to see a rheumatologist as my last sed reading was 33 which is half my age , which is what he said it should . I am had I am not 100 years . My blood pressure has been up and down . Normal 130 over 90 but last few months fluctuated and when I saw the neurologyst it was 170 over 90

What to do , what to do

Carol

I know exactly how you feel, been there got the T-shirt, DVD, seen the movie etc, you will get through it - it is just so frustrating.

I am not much help on this one, but I would ask you to tell  your GP everything.

The shoulder problem could be because of the PMR (sometimes Rotator Cuff injury) and that needs to be sorted out. (orthopaedics for that one).

Migraine, can be sorted out with either pain killers from the GP or Feverfew tablets - but check with a Pharmacist before you even buy them for compatilibily.

I would also give Bowen Technique a whirl, it does so much good and although not cheap, you have to book three sessions in subsequent weeks, but if it does not work for you within those three weeks the therapist will tell you - they are the most honest practioners I have come across.

CRP and ESR are guidelines and guidelines only to tell the medics that something is going on.  I was 69 when I started on the journey I took and neither my GP or Rheumy would accept 33. They were not happy till the ESR was in the low 20's and the CRP was down to 8.

Stick to MrsO's advice, I would say exactly the same.  When you come back don't even think about dropping, not even by 0.5mg, until you have everything that is going on with you cleared up.

My blood pressure used to flunctuate and nobody was ever bothered by it, sometimes they just took it twice  (white coat syndrome) and if they take it when you have just arrived at the surgery and sat in those awful chairs waiting your turn and anxious, what do they expect.  Get them to do it twice, once at the beginning of the consultation and once at the end.

Keep your chin up, if possible, with that nuisance of a shoulder