I went to a talk on Nordic pole walking this morning and am due to start an 8-week course in September. Many of you will remember that Nordic pole walking was recommended for PMR sufferers on this site by a Mr A during last summer (I think the thread is PMR and Nordic Walking if anyone wishes to look it up).
Whilst there I met a lady who had PMR and GCA 10 years ago and fully recovered in 3 years. I was particularly interested to hear that, like me, she had recovered from the two conditions as I have heard that it can be more difficult to get off steroids completely with GCA.
My co-ordination was a little out of sync when I tried the poles for a few seconds this morning so I just hope they will be safe in my hands and that I don't poke anyone, but then if Eileen can handle her ski-ing poles it can't be that bad can it?!!!
I just thought to hear this would give you all a boost and confirm that there is light at the end of the tunnel so keep smiling everyone - not so difficult in this gorgeous sunshine.
That is very encouraging to hear of someone getting off the steroids with both PMR and GCA It is always nice to hear of someone on a similar position I am always pleased to see on other postings I am not the only person who has had PMR twice as at first I felt the odd one out !!
Hope you get on well with your Nordic poles I bought mine but that it is as far as it goes !! Since the weather has improved I have been doing lots more work on my land and in my garden so feel I am getting enough natural exercise I did try it with my electric fence poles when I was moving the horses the other day !!
I really hope this weather will continue as it has been such a boost but Wimbledon and Glastonbury are due !!!!!
Good luck with the Nordic poles and the electric fence poles Mrs.O and Mrs G.
I have posted on this before but good news does. perhaps, bear repeating and we all need all the encouragement that we can get.
I have a friend who had GCA ( but not PMR ) and was very ill indeed before he was diagnosed This was some twenty years ago. Wrong age
( fifties ) wrong gender ( male )
After eleven years on Prednisolone he was completely cured, had almost no side effects and has since come through a multiple heart by-pass and continued an active life.
Having come through one episode of PMR I have every intention of getting through this second one along with Mrs.G
I meant to say \"suffered\" rather than \"recovered\" in my 2nd para, as of course I haven't yet recovered.......quite!
I am at present endeavouring to get to 1mg (it seems unbelievable!), this being about the 7th week of the taper and on 2 days at 1.5 and 1 day at 1, so another week or two and I will hopefully, fingers crossed, reach 1. I have got a little bit more discomfort when first rising from a chair and also in my right top arm muscle but a fantastic physio is working on that and has so far got rid of a lot of muscle pain in the shoulder blade area on that side.
The \"recovered\" lady that I met today said that she underwent a lot of massage therapy during the final months of reduction which she said definitely helped her. She wasn't prescribed any bone protection or stomach protection at the outset 10 years ago (did they know that such protection was necessary then, I wonder?) and she unfortunately developed steroid-induced osteoporosis. She was then prescribed various bisphosphonate type drugs but was unable to tolerate any of them. However, she said there has eventually been a slight improvement. My physio is of the opinion that if we have steroid-induced osteporosis our bones will improve when we come of the drug, whatever our age, but this is contrary to what we usually hear - although I will hang on to that dream as I'm unable to take the meds!
Mrs G and Betty, I really do think about you both such a lot and how you are having to cope with the return of PMR. To be diagnosed with it once is devastating enough but you both sound like fighters and you should feel very proud of the way you are handling it.
Mrs G - I'm sure you don't need Nordic pole walking with all the exercise you have working on your land and with the horses - you did make me chuckle the other day when you said you told your horses how you felt but they didn't seem to listen! I have the same problem with my puss cat!
Lots of best wishes to you both and everyone else looking in.
So pleased you are doing so well with your reductions I think a lot of the recovery ( I hope ) process is accepting we are all different and need to suit our reduction programmes to our own needs I was so sure my PMR would follow my first bout when I went from 20mg to 1mg in a year stayed on 1mg for a year and back to normal So I have come back to earth with a bang !! particuarly in Jan Feb this year when I did feel low even back up to 15mg I couldnt wait to take some paracetamols as well to cope with the aches and pains
My house garden and land look a lot better now Am reaching places I couldnt reach last year at all !!
Yes I think massage is great The hot stone massage I had was wonderful I was useing stairs as though I had one leg working and after an hour with this lady I could bend my knee It was fantastic Unfortunately she is in Dorset an hour from me
My Dr put me on Alecdronic acid straight away this time She said when I had it in 2002 the way of thinking was they waited till a Dexa scan showed a problem but now they were on prevention rather than cure
IF I carry on feeling as I do I will consider some exercise in the winter when I wont be doing so much outside I gave up my health club and helping with Riding for the Disabled as I was getting pulled muscles and dont want to rock the boat at present
I will get the Nordic poles out this weekend and have a try I did at one time have this lovely horse who you could put your arms around and she would rest her head on your shoulder , she knew everything we had to shut her in the yard when the vet was coming with a nice big needle as she seemed to know when he left his office and would disappear !!!! I miss her Im sure your cat is a great comfort to you when you only feel up to sitting and doing nothing
Monday I was \"an angel\" today I am a fighter ( thanks Mrs.O ) so I am feeling very pleased with myself! As pleased as the day recently when I parked our dear old Volvo Estate next to a driving instructor and he said \" that was well done\" ( I should hope so after more than 50 years driving ) but, of course, I smiled and just said thank you. Actually the Volvo is much easier than the Mini we once had but I didn't say that to him, either.
It doesn't take much to make someone feel better and this site does a wonderul job in that and every other department. We don't change much, do we? The infants I used to teach were so easily encouraged by a word of praise. I hope there is still time for that in today's educational world. I expect it is the same as with the Medics. Not all to do with qualifications; much more with the quality of the person.
Have just read the N.E Newsletter. What a vote of thanks these people all deserve. Thank you all. BettyE
She wasn't prescribed any bone protection or stomach protection at the outset 10 years ago (did they know that such protection was necessary then, I wonder?)
Sorry, forgot to put this bit in!
When I had PMR in 1999 the risk of osteo p. was mentioned. I was given something called Cacit. It was fizzy tablets that wrer dissoved in water and had to taken in the middle of a four hour fast. ( I finally worked out that the best time was bed-time as then I didn't have to watch everyone else having a cup of tea or something to eat and not being able to join in! ) They caused no problems and had a pleasant orange taste. As no-one has ever offered me a Dexa scan ( and they won't now as I'm over 65!! ) I don't know if they did any good or not. There were also chewey tablets. Calceos, perhaps. This is all I am having now as I cannot tolerate bisphophonates, either. I also have proper milk, butter and yoghurt and hope that that will be sufficient. Also free range organic eggs.
Way back I took part in EPIC which was a Europe wide project into the connection between diet and cancer. That involved a heel scan which must have looked ok as there was no follw-up. I do just wonder how correct the statistics re o.p. are. The poster on the wall in the RH. Dept waiting area said one in three were at risk. Really? How do they know? As our PCT refuse scans to anyone over 65 and just say take the stuff they cannot have any statistics for the oldies who would have been ok without. Like Mrs. O I'm just keeping my fingers crossed.
Re the stomach protection, that has never been offered, either but as I seem ok with the bog standard Pred. I haven't raised the subject.
As no-one has ever offered me a Dexa scan ( and they won't now as I'm over 65!! )
BettyE
Oh yes they should, the Dexa scan is available to any women, past the menopause and heading towards 60. And even more so in a long term steroid user and it is NHS policy to offer these scans.
Reason, a higher incidence of hip and knee replacement is in Woman, this is because once the menopause happens, bone loss occurs.
Dexa scans cost the NHS about £20 and take about 20 minutes. A hip or knee replacement is over £17,000 currently and a hospital stay of at least five days. Prevention is cheaper, but also better for us.
I did not know about Dexa scans until I was sent for one immediately I was on steroids and had been on them for six months. I was 68 and have had one every year since. Next one due, November this year.
I am lucky, my bone density is holding at 97%. The medics put that down to long term HRT. I still take 0.625mg of premarin everyday and have done so since I was 33.
So ask for a Dexa scan. Do not bother with the 'heel' ones offered at some superstores or chemists for a price. You need the 'hip' and heel one done correctly at an NHS Hospital.
Remember it is your NHS and you are paying for it - just ask for the scan and if challenged tell them its NHS policy and to look up the directive issued.
In response to your \"won't be offered a scan at over 65\" - I've just asked my husband who used to be head of the department that did them in his hospital and he says he suspects that may depend on the Trust policy but he wasn't aware of such a rule. Above and beyond that - whilst reading on the internet this morning I found some stuff on an osteoporosis site from the USA where they said that the majority of bone density loss after the menopause occurs in the first 1 to 5 years so, if you take the average age of menopause to be 51 and the upper age to be likely to be about 55, then most damage has been done by the time you are 65 and so that would make a dexa scan redundant after that. I'm not sure about the figures but I imagine that osteoporosis is a normal part of aging anyway and that eventually most women would become osteoporitic as they live longer beyond the menopause and become less active - both causes of the change in bone formation.
Being osteoporitic does not, however, 100% mean you are going to break bones - there are other risk factors involved and attention to them reduces the risk considerably as well: good lighting, removal of things you might fall over (including pets, the grandkids toys, rugs, worn carpet etc), diet and body-weight bearing exercise and elimination of other lifestyle risks such as smoking, too much alcohol and so on. In fact, it is also possible that the reduced bone density measurements are not the most reliable indicator of risk of fracture but another indicator related to another structural aspect of bone formation is better (I can't remember what it was called now though - wish I'd noted the sites I visited this morning!).
What is certain, though, is that in many (though not all) patients the use of higher doses of steroids over a long period does affect bone density and, again, the majority of the change occurs in the first year of treatment. This is a different risk to the menopausal one and should be monitored - preferably with a dexa scan once every 1 to 2 years at the most and should therefore have nothing to do with age. There has been some discussion on this on another thread and MrsK said she has one every year, her GP reminds her. (I see she's repeated it here whilst I've been writing!). Everyone with PMR should have one at the outset of treatment to provide a baseline reading and it should be repeated at intervals as long as steroid treatment continues. They are not expensive - MrsK says about £20, my husband thought about £70 max although that was the figure for selling the service to another Trust so was probably higher than the real cost. Either way - a lot cheaper than dealing with a osteoporitic fracture of any sort and especially a broken hip! And much less painful!
There is no longterm data on what happens when taking the alendronic acid and some authorities feel it should not be used for more than 4-5 years altogether. Ten years ago, HRT was still seen as the magic answer to osteoporosis and in some cases the risk of the osteoporosis still outweighs the risk of the HRT. But it wasn't the wonder they thought at first because of the possible longterm effects of artificial oestrogens - and maybe the efforts of the manufacturers of Fosomax (the original brand) to ensure every woman with even the slightest fall in bone density was encouraged to take it may turn out to not have been a service to womankind after all. Personally, I don't think it should be used \"preventatively\" unless a fall in bone density has been demonstrated - and that needs at least 1 dexa scan and 2 dexa scans in anyone whose bone density was still very definitely in the normal range in the baseline scan at the start of treatment as mine was.
However - my reading this morning was chasing up a reference I found to prunes! A researcher in the USA has done a couple of studies on prunes in osteoporosis and claims to have found they are associated with an inc
I've got my all my toes crossed as well as my fingers - my first DEXA scan at the commencement of steroids showed normal spine and hips but my second scan during my second year on steroids showed osteopenia of the spine with a T score reading of -2 (the norm is greater than -1; osteopenia is between -1 and -2.5; osteoporosis is a T score below -2.5). I do so hope the yoghurt, milk and oily fish, walking and low steroid dose prevent a further deterioration.
Do go and ask for that DEXA scan - don't bother with just the heel one as I've heard it isn't so accurate.
And, snap with the Volvo Estate and well done for keeping the side up with excellent parking, but yes, they are easy to park considering their size aren't they. We are on our third one - they were great when we had two golden retrievers to cart around (sadly lost the last one when I was at my worst and bedbound) and we were going to downsize this time but it turned out to be the easiest car for me to get in and out of especially now as it's got a higher wheelbase and I find it so very comfortable with my spinal problem let alone the PMR.
Oh that horse of yours sounds as though she was so cuddly and loving - we've had two border collies and two golden retrievers over the years and they have all been like big teddy bears - great for telling your troubles to and soooo intelligent......when they wanted to be! - miss them like mad still.
It's great to hear that you are feeling so good again and you're very wise to not rock the boat at the moment - as I said previously, it sounds as though you are already having enough exercise on your land and especially reaching those small corners again!
Thank you for yet another informative post - I've put prunes at the top of my shopping list for tomorrow to feed to my bones and if they reduce my cholesterol as well I'll be over with a bottle of wine and a hug!
What cups of tea scares? Sky News is too occupied with the football to tell us anything like that! Maybe they all need a cup of tea after last night - I was struggling to keep awake :roll:
Ah yes, yesterday \"4 or more daily cups of tea increase risk of rheumatoid arthritis\"....... but today (same newspaper) \"6 cups or more very beneficial to the heart\"! I will continue to enjoy my daily 4 or so cuppas of decaffeinated. But I think the England team should definitely take pure caffeine!!!
Oh - right, I googled just after posting and found today's info and wondered what was scary about that! However - today's was a Dutch report I noted so they did query what the effect would be if you drank your tea with milk (the Dutch, like everyone else this side of the Channel, drink their tea without milk - ugh!).
And you're left to wonder how the British have survived as a race. When I had my second daughter in a German hospital on day 3 post-C-section I was told I could now drink, what would I like? Obviously, a cup of tea, black tea (i.e. proper tea, as opposed to herbal stuff) but with milk, I explained. Oh no, I was told, that would make you ill - peppermint or camomile was the choice. I declined and made do with water. :roll: :lol: