PMR/GCA For over 12 months .GCA the most painful of the two ,came down Pred too fast and now back up to 30mg .
Headaches, Shoulder, Back, and fingers/wrist , worst by far at night and early mornings .
Trying a different GP at my practice and told to stay on 30mg for 1 month then review.
Very helpful Forum and thanks for all posters.
Good luck with your taper this time. I think you kind of have to properly accept what has happened to you and how your life has been turned on its head before you do an effective DSNS taper. It takes acceptance and the patience of a saint.
thank you for sensible advice .Hopefully I can regain control
Hi,
Good advice from your second GP. Despite what some doctors think, you have to listen to your body - not do everything in accordance with their plan which may look feasible on paper, but in reality very often isn't!
Having been down that road once, through no fault of your own, I'm sure you'll take things more slowly this time.
Just for your info my GCA lasted 5&half years, and that's not unusual so no point in rushing things. If your GCA/PMR is still active, you still need the Pred!
Hopefully you will now be able to start again and taper according to what your body needs, not what the doctor prescribes, desires, or has read about the process. Time me thinks to put the past behind you , knowing that you are in better hands and have gained invaluable experience and knowledge for the rest of your ( hopefully uneventful) journey. I think many of us have also been in that place and have had to go up again at different levels. You are not alone.
nessclif (husband replying ) nessclif still struggling,hardly any sleep ,very painful in morning
headaches,sore throat ,shoulder pains .
What is LDN , also is PEMF treatment effective.
seeing Cardiologist tomorrow for further tests .
thanks on behalf of nessclif
Low Dose Naltrexone - it is not a recognised therapy in the UK and when used is being used off-label. Google it - but bear in mind the practitioners who are providing it privately are making money out of it.
I have heard of people who say PEMF helps but I am far from convinced myself. And it REALLY doesn't come cheap.
Thanks for update.
I have had a search ,PEMF Looks to be an expensive way ,and thanks for LDN suggestions ,always good to have sound advice .
One thing that puzzles me an outsider is how is steroid reduction (taper) calculated without any visual indication .
This forum is an excellent walking stick for sufferers .
Sorry - don't get what you mean.
You start with a dose that should be more than enough to manage the symptoms and then you titrate it - you reduce it slowly and carefully until the symptoms start to return. Then you go back to the last dose that worked. It is empirical, it covers all the variables that might contribute to what dose you need. Enough means no symptoms, too little means they come back. Is that what you mean?
sorry for confusion as I am posting for my wife ,she is in her second year on preds ,GP put her on 30 mg pred last month after starting on 20 .She has never been free of pain from the start but 30 certainly seemed to help.
She is now on 27 ,currently pain now in one wrist, shoulder, and headaches .also mild swelling of ankles and very little sleep .
Reading your advice I would assume she really needed to be higher than 30 from the start.
Thanks for explanation
Or it isn't PMR - and that is even more likely. PMR pain does tend to be bilateral - and when a patient has one-sided problems it is often due to myofascial pain syndrome (or something similar) or bursitis.
Has your wife seen a specialist?
Three visits initially to local Orthopaedic Hospital (she worked there as a nurse majority of time on Spinal Ward)
The visits mostly concerning wrist and hand swelling at the time .
Interesting suggestions I will investigate.
GP has NOT actually said what the problem is as far as I know but did organise the first Orthopaedic visit .
I'm not sure the orthopaedic hospital is the best place for muscle problems - doctors are notoriously poor at identifying anything they can't see on x-rays or an MRI scan. A physiotherapist or therapeutic massage therapist would be my choice.
I knew there was something else I meant to say in the previous post - tell us more about the headaches.
Headaches probably not the correct word, more like intense shooting pain and not all over , last one started side of neck and shot upwards , also top of head , almost like following artery paths .
Blood pressure high at times but seem to be under GP control.
Have you any neck or shoulder muscle problems? Does your scalp feel strange? Tender, sore if you brush your hair, lay your head on the pillow?
apologies for delay, Wife has attended hospital for tests and advice but no indication of what her problem is. Next appointment is to have the 24 hr BP (she has had these before at least 4 times by GP but this latest request is Hospital ) 30 mile round trip and at least £3 parking ,cannot understand why local GP was not asked .
For the past 8 days ,wife in total agony with severe pains between Hips and Groins (both sides) and unable to walk anywhere,top of legs seem to be locked preventing movement ,GP visit yesterday ,full test carried out ,bending stretching etc then advised to wait a week as she thinks its Severe Groin Strain .Equally as bad today.
Currently on 40mg Pred ,plus 30mg Sopadol (co-codamol) .
Very little sleep and sitting in a chair can ease the pain but getting back up seems to be agonising .Trying to use a walking stick but arms very sore and fingers swollen .
Anyone experience similar on here would be a comfort .We are both over three score years plus 20 , but quite active until this burden.
No relief so far ,wife put on a lot of weight so dreading more steroids .Thanks for reply .
Then there MUST be a question as to whether this is the PMR we talk about here if the PMR-type symptoms aren't improved. If there is any question of GCA then a GP is generally not competent to manage it - there are exceptions.
Your GP is out of her depth - your wife needs an emergency referral to a rheumatologist. Now - not in a week or two.
sorry for long delay
Wife taken to hospital for checks following severe pain in the groin/ back area, many tests and xrays ,no problems showing ,stayed in hospital for 5 days with various doctors trying to diagnose.
Finally sent home with a referal to local Orphopeadic for MRi scan, Scan results showing a small fracture in Pelvic back area ,result sent to local GP .Wife still unable to walk but using a walker support frame to get to the bathroom, also using a Comode at night bedside.
prescribed Morphine Sulphate with syringe 3 times a day. still severe pain especially bad down left leg to ankle and this are getting Very swollen and very very painful ,this pain throughout most of the night .Prescribed Pregabalin plus 8 co-codamol .Still pain as bad as ever.
Now stop co-cod and take Paracetamol 6hrs interval
Prescribed Morphine Zomorph slow release as an addition.
Still pain as bad as ever
increase yesterday to double dose of Zomorph (2 tabs twice a day 12 hour interval)
still to use Morphine sulphate if required to assist.
3-30 am wake up again in severe pain in back legs and shoulder , took 1 pregablin plus 5ml Morphine ,
woke in severe pain at 5-45 am.
Both legs and ankles very swollen and making it very difficult to shuffle around on Frame.
also taking daily 25 Pred ,plus water tablet ,
Anybody else on this supportive forum experience similar if I discount the fracture side .
We are currently awaiting for the Spinal Specialist to study and hopefully advise on the fracture ,we have had currently 5 different GPs visit following my requests .
I would very much like to know if the severe swollen leg ,ankle, and shoulder pains are PMR
in this case which is so confusing .
Thanks in advance
This sounds like a terrible ordeal. Can't help much regarding for issues but have seen others on firum have fractured in back and pelvic region.
Regarding swollen legs. I saw in earlier message your poor wife was sleeping in a chair. If this is still the case this won't help with swelling. Feet up if possible. Hope she is able to get some bed rest. I am sure that all those medications are impacting. I can only sympathise and hope you both get some relief. I had slipped discs and was immobilized for month but once sorted was much better. I was much younger but these things can and do heal. I hope they get to bottom of it. I wish I could off more help. 🌻🌻🌻🌻
Thank you for reply,we now have a reclining chair but she still prefers the bed but such a painful struggle to get in ,leaving the bad leg hanging over the edge helps a lot but trying to get up again is extreme pain.
GP on the phone , take maximum Pregabalin tablets (6 twice a day) previousley on 8
also take Paracetamol 2 tabs 4 times a day
.
Stop co-codamol .
Slipped disc myself a few years ago (sneezing pulling my socks on ) lasted quite a few years off and on and that was intense pain.Good job we cannot recall pain only remembering how painful it was.
Are you in the UK? You should have Occupational therapy/Physiotherapy assessment for home aids.
yes had a visit ,physio not happy to intervene until specialist reports back.
Better night last night with pregabalin increase , but affecting vision (blurred) also 2 Paracetamol .
6am ... 2 Zomorph, Esomeprazole
6-30 am 3 Pregabalin , 2 Paracetamol. 2.5 Morphine sulphate if needed.
8am 25 Preds,
9am
B/Pressure tabs Atenalol
,lercandipne, Losarton, 27 aspirin, furosemide.
10 am 2 Paracetamol, 2.5 morph sulph if needed.
Mid afternoon
3 pregabalin , 2 Paracetamol, 2.5 Mo Sulph if needed.
6pm 2 Zomorph
6-30 2 Paracetamol , 2.5 M/Sulph if needed.
10/11 pm 3 Pregabalin, 2 paracetamol
Didn't expect her to intervene - but offer some aids in the meantime!
Yes aids on the agenda but we have been cut off by over 12 inches of snow , cold thaw today shifted more than half.
Yes I always think that. You only realise how bad you were when you feel a bit better and then gets almost wiped.
I typoed earlier....was in bed for almost 8 months with discs and sciatica. I can relate to the idea that movement is too painful to contemplate. Best wishes.
GCA Osteoarthritis 
Tapering steroids
Very confused Chessington Newby
