I had a blood test last weeka nd my GP said she is pleased as mu inflammatory markers are now noirmal having being high on diagnosis of PMR in Ocober last year.
Does the mean thgat the Pred is doing its work?
Or is the PMR lessening off?
I am on 13mg - feeling OK now sciatica easing off - GP suggested it may be a good time to reduce to 12mg.
I dont really know how inflammatory markers relate to PMR?
Cassie, that sounds like reassuring news, and yes it certainly does mean that the Pred is doing its work. But it's early days so doesn't necessarily mean that "PMR is lessening off", just that the steroids are controlling the inflammation at its present level - they are not curing PMR.
Being someone who had very high markers of inflammation in my blood tests at diagnosis, both I and my rheumy found the repeat tests an excellent guide as I reduced down through the doses. However, symptoms should always be taken into account alongside the blood test results as it is sometimes possible for the results to lag behind. This is the reason why small reductions are recommended as it is easier to see at what stage inflammation might be creeping through again and quickly get on top of it by returning to the previous dose at which we felt comfortable.
Good news though and long may it continue.
Hi Cassie
I started preds in August last year and at present reduced from 11.5 to 11
My advice would be listen to your body and if you feel ok reduce but I only do .5 at a time .
This appears to be working for me but we are all different .
I will stay on this for two weeks and if still feeling ok will reduce to 10.5 but will stay on that dose as going away for a few days in Feb.
So know that travelling and doing more may have a effect on the PMR so will wait till I come back before going any lower .
Best Wishes
Rose
Hi Rose
Thanks for your advice - good idea to reduce by .5.
I agree with you about travelling - I find the effect is not at the time but afterwards. After Xmas I did a 9 hour train journey to see family and felt drained afterwards - also its the planning beforehand that takes its toll and I slept on an air bed for 3 nights which was a bit chilly. I will have to look after myself more and plan reductions carefully as I will be away for a few days in Feb too and although I rested with my family, it's still tiring. Had to go though as new baby granddaughter born Xmas Day - so it was lovely,
I make sure everywhere I go I have warm footwear as I dont want to get caught out if it snows - no colds and coughs yet this winter-fingers crossed!
Cheers
cassie
Hi Cassie
I had a new Grandson in Oct like you I have a long way to travel 20min across sea and 5 hour train trip .Have to cross London on underground which I have never done before on my own ,Luggage and stairs will be my problem but I am going as I have only seen him once.
Luckily not so long as yours but it is still stressful but as you say well worth it.
I have invested in a new lightweight suitcase on 4 wheels and travel bag think forward planning is all we can do .
Enjoy your time away in Feb and give that baby lots of cuddles.
I am going to take my Grandson swimming for the first time.
Rose
I have taken the London Underground numerous times. Depending which lines you travel there is often, not always, a secret elevator somewhere if you ask a worker very nicely and behave somewhat disabled. You can sometimes also get help on the main lines. I think things get better all the time as awareness of disabilities is growing. Just allow yourself a lot of time, time even to pause and enjoy the characteristic smell of the trains, or the flower stalls, etc. I bought some lapsang souchong recently just because it reminded me of the smell of a train station. Ahhh, nostalgia. Enjoy the new grandbaby.
Found this:
tfl.gov.uk/transport-access...
Oh yes, that smoky smell!
Hi Cassie, I find it a good idea to ask for a copy of my blood results each time, so I can look back over time.
How did you get your sciatica to ease off? I cannot decide which I would prefer to have Sciatica or PMR!! The sciatica keeps me awake at night, limits what I can, in fact is an absolute pain in the rear, literally.
Hi Piglette
When I say ease off I mean compared to a couple of days ago when I was doing exercises on the floor for piriformis pain in buttock and after I couldnt get up for half an hour after I put an ice pack on it.
Do you think this scaitic pain goes with PMR?
This is my second bout is sciatic pain as you say it is horrible - had it for 3 weeks so far - hope it gos away soon!
Thanks I will ask for blood test result copy.
I dealt with sciatic pain by having a few sessions of Bowen therapy - a few others on the forums found it helped too. The University Hospital in Durham uses it in their Pain Clinic because they find it so helpful.
If you also have piriformis syndrome it is likely your sciatic pain comes from tight muscles in the low back - the sciatic nerve sometimes passes through the middle of the piriformis muscle (not in everyone) and if the muscle is spasmed it pinches the nerve and causes the sciatic pain. Bowen really would be worth a try if you can afford 3 sessions - if it is going to work for you you will know by then, possibly even sooner.
Poor wee bairn! A Christmas Day birthday! My daughter is the 22nd and that was bad enough with "combined" presents! Are they both doing well?
Surprise, surprise - my daughter was born on the 28th Dec! We really must stop this! But we made sure she never got combined pressies!
Thanks- they are thinking of a summer celebration as well as a Xmas birthday to split it up- as least her brother will always get presents on his sisters birthday- they are doing well thanks and are relaxed with second baby but sleep deprived of course!
Hi Cassie, I saw my physio yesterday and she said I have severe inflammation of the sacroiliac joint causing the sciatica. She used ultrasound and general massage and it is a bit better this evening thank goodness. I have managed to book a telephone conversation with my GP, to get even one of these nowadays takes nearly a week. Poor old NHS. Do you take any pain killers? I have had the sciatica for two months. I have stopped trying to reduce pred for the moment as my brain cannot get round the idea.
Thanks - Piglette -trying to stretch with exercises before I get out of bed- but this pain is worse when I straighten up- have to do a few laps around the house before I am at a reasonable level- I think we PMR people cultivate a high level of positivity to rise above and try to carry on as before if at all possible I find that despite all things PMR related- the determination of people is inspiring- i know nothing about TENS machines are they any good do you know
Cassie
Hi! I used a tens machine a lot pre diagnosis with PMR and found it invaluable. It wasn't an expensive machine and I got it from Lloyds Chemist. Definitely recommend it.
Thanks for you advice i will certainly look into it
That's what mine eventually developed into - and it was sacroiliacitis that led to the admission to hospital for their first line approach here: i.v. high dose pred and painkillers in the morning, i.v. valium as a muscle relaxant in the evening x 3. I only got the full lot twice as I reacted to the i.v. valium with a big atrial fibrillation episode! Very rare it seems.
So then I was sent to the pain clinic - where the pain doctor (an anaesthetist) decided all my back muscles were as hard a boards and that the spasmed muscles were the cause of the sacroiliac problem, pulling the joints too tight together. She gave me injections into the back muscles - steroids and a technique called needling. It took several months to get them "soft". The back problems kept returning every so often - until I had a wisdom tooth that had been erupting squint (for nearly 30 years altogether but only in the previous 10 years had it been through enough to affect my bite). Since it was removed my back has been much better providing I'm careful, not perfect, but far far better. The effect of the tooth on my bite was enough to mess up my entire back when it was left to mount up.
Piglette, I have had a few bouts of sciatica over the years, sometimes caused by simply going over on an ankle. I have a slipped vertebrae at the base of my spine so am obviously quite vulnerable to any slight trip or tumble. I haven't discovered any wonder treatment for that problem personally, but during the latter stages of PMR/GCA, I developed severe pain in my shoulder blade area and it resolved very successfully with gentle massage, ultrasound and heat treatment by an excellent physio over a few treatments. Because of that, I feel the ultrasound and massage you are presently undergoing may also prove very helpful for your sciatic pain. If it doesn't, then the Bowen treatment that PMRpro has suggested may be well worth trying - two members of our Surrey Support Group have recently found Bowen sorted their problems - one of those was sciatica.
Thanks Celtic. I sometimes find stretching can cause a horrible pain down the leg if I am not careful, sciatica is really nasty. I did try Bowen last year but not for sciatica, unfortunately it had no effect on me. I think the person doing it was a bit iffy though.
Maybe it would help the sciatic now? Just wondering, nothing else.
That is true. I must admit the ultra sound or whatever the physio did this week has helped, so I might carry on with the physio for the time being to keep costs down, also the iffy Bowen lady is the only person close by unfortunately.
Oh dear - which sources have you used to find one? There are two registers and they have different members. Plus there are the ones who aren't on the lists...
I have looked on the internet and contacted our local complementary group. This lady seems to have a monopoly around here, she goes to several different places, she must work a twenty four hour day. There are two others but they are twenty miles away. My physio is fifteen miles away and I am not that keen on driving that far even.
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