Just back from a very good visit to the Consultant. CRP 2/ESR 2 (CRP down from 22 - ESR always low). My results reflected how much better I've been feeling since reducing to 10mg on the 1st March (previous 2 drops proved much more difficult). She's now sent me away with a programme of reduction that needs a degree in maths but makes sense to me and I hope its going to work. I'd be interested to know if anyone else has been given this programme. 1st week: 9mgs followed by 6 days at 10mgs. 2nd week: 9mgs x 2 days and 10mgs x 5 days equally spaced (I hope you're following me and haven't dropped off to sleep with boredom :zzz: ) 3rd week: 9mgs x 3 and 10mgs x 4 ditto above. By week 7 I'll be down to 9mgs all week. I then repeat the pattern to get down to 8mgs etc. etc. It will take 63 weeks or thereabouts to get off the steroids completely (if I'm lucky!) She said there may well be some blips and to listen to my body, but she also said that she's finding this quite successful and is hopeful that it will work for me. Although it will take a whole 7 weeks to reduce just 1mg I'm going to give it a go as my Consultant is very focused and seemed very excited that she had found a way of getting a good percentage of her patients off of steroids completely albeit very, very slowly. I'm now going to sit a Master's Degree in Maths to work out what I have to take and when (actually I'm just going to buy another pill dispenser and do a week's tablets at a time). The only negative was my cholesterol but that's another story and I won't bore you with it :? Keep well. Lizzie Ellen
Hello Lizzie-Ellen - my, those ESR and CRP results are impressive. Yes, that regime is very similar to the one that Ragnar has recommended for reducing when below 5mgs (a well noted difficult position from which to reduce) and one that I have followed for the last 6 months or so. I do so know what you are talking about re needing a degree in Maths - my husband drew up a calendar for me and I follow it religiously....my little grey cells would never cope without it - sometimes when on the high dose steroids I couldn't remember whether I'd fed the dog or not! As for your cholesterol, SNAP, mine's 6.2 and I've been asked to make an appointment with the GP!
Good luck with those future reductions - slowly does it, as they say.
Hi Lizzie Ellen Your blood results are really good news I am very interested in this method of reduction and will mention it to my DR as she is always very receptive to ideas When I had PMR the first time I came of steroids in 2 years with a very conventional reduction prog with no problems but considering I have had to go up from 4mg to 15mg since Xmas and I am almost 18mth into this bout I think some different thinking is needed to beat this dratted thing !! I am coping OK on 12.5 at present and do have a lot more energy than I did so positive thinking It will go away !! Off to Prague for the weekend for my Birthday ( booked when I was on 5mg !! ) and thank goodness the weather has warmed up there a bit I wasnt enjoying looking at the snow on the webcam We have had enough here !! Hope you continue to improve and have printed your reduction prog off as dont think I will remember it !!
Hi Mrs O. I asked the Consultant today about the 'brain suspended in treacle' syndrome ( :? ) and she said that steroids make you retain fluid and this affects the brain - so relieved there's a medical reason for being so vague at times. My cholesterol has gone back up, its 6.5 and I already take a hefty dose of statin. I had to come off Simvastatin as I had dreadful cramps with it and now take Lipitor. Still get cramps, but not so bad. I'm reluctant to come off statins as last time I did that mine shot up to 9.2 so its off to the GP next week to see what she comes up with. I guess we're lucky to have so many medicines at our disposal as we get older but like most of us on this site, my medicine cupboard is getting a bit crowded!
Hi Mrs. G.
Pleased to hear your energy levels are improving. I actually got the cleaner out yesterday and whipped round the house like a 5 year old (well maybe a 65 year old, but hey, who's counting!). The big improvement was that I actually wanted to do it, a little enthusiasm creeping back into my life - Yeh!! We've been thinking about Prague for my birthday so would love to hear how you get on. Have a great time. Good luck with the next reduction. My Maths Degree starts on 1st April and my partner (like Mrs. O's husband) has been sorting out a calendar for me.
Now you see - if I WANTED to do the cleaning like that I'd suspect I was sickening for something!!! Would you like to come for a visit and clean my little flat with hard floors? Where on earth does the dust come from? :-)
And see this whole fluid retention with steroids thing - during the PMR symptoms stage I used to have swollen feet and ankles in the evenings before getting the steroids, they disappeared completely at the higher doses (above 7.5mg/day) but have come back now I'm down to below 7mg but the night sweats/daytime flushes are almost a thing of the past with exactly the opposite pattern. Is that where the fat feet have come from? What a bizarre disease! Didn't have too much trouble with treacle brain syndrome though.
And for all you guys off to Prague - do enjoy! I've not yet made it there but I'm told it is lovely. I'd still be packing the winter undies in case though - the cold comes from the east over here and it's still a bit frisky in Russia so it won't take much for the temperature to drop again! Work on the layers principle and you'll be fine - then when the sun shines, you peel off the layers like an onion. The sun really has some heat in it now so remember to pack the sun cream - I was sunbathing before lunch up the mountain today and also did so down here in the valley at the weekend - but when I came down expecting to spend the afternoon on the balcony it went all cloudy!
Lizzie Ellen - find out what the breakdown of the cholesterol reading is, ie the HDL (good) and the LDL (bad), because if you have a high HDL reading, then less to worry about. It's great to hear that I've now got water on the brain as well as all my other problems!!!
Mrs G - Wishing you a very happy birthday and a lovely time in Prague. :cake: :bubbly:
Thank you all for your good wishes When I went to Prague 2 years ago I was able to walk miles and miles If anyone knows it across Charles Bridge uphill to the Castle all around The Castle then further miles uphill and THEN climbed their mini version of The Eiffel Tower before walking all the way back (downhill ) !! Where did it all go wrong PMR !! This time I will be just playing it by ear I hoped we would be able to do all that with the help of the funicular railway this time but its being serviced !! A month ago I was wondering if I would have to cancel so things have improved This beautiful weather has really helped I spent the afternoon down with my horses pottering about and watching the deer eating all my grass !! I am due to reduce to 10mg in about 10 days but I will make sure I feel OK first I am trying to go with the flow and just accept this could take some time and I am one of the lucky ones who so far hasnt had any side effects from steroids ( except the weight ) !! So after all Birthday celebrations are over ( a friend gave me chocolate deserts made I think with Irish Cream ) !! I shall try eating less carbs more protein and trying more exercise My sister in law ( who lives in Italy!! ) saw an advert in the Sunday Mail for a Nordic walking group in the New Forest ( where I live !! ) so I shall have to investigate that Anyone tried it ?? I miss my health club but know it had got too much for me Im really interested in all the answers you get from Consultants and have suffered a bit from treacle brain earlier in the year when I was feeling worse and if I took paracetamols I was leaving the packet out oherwise I was in danger of taking too many Very careful with my steroids leave them in a very prominent place Anyway best wishes to all and hope we all improve
MrsG - I've got my name down for a Nordic Pole Walking class starting in June which is run through Age Concern. Apparently they are doing a one hour brisk walking class and a 15 minute slower one - I think I'll try the slower one first as I don't think my back is up to walking for that length of time briskly, although I do manage a fast 35 minutes at the moment. If you get to try it out before me then perhaps you can let me know how you get on. MrsO
When I'm in Spain I see a lot of Scandinavians using those long poles for walking on the beach :surfer: (couldn't find a walking emoticon, so had to go with a surfer!!). They really stride it out and it looks to me as though it not only aids walking but uses the arm muscles as well. I'll be interested to hear how it goes. I'm going to have another go at the gym on Monday - the Consultant said it would help with my cholesterol - why wasn't I told getter older was going to be so tough. If I'd known I would have stuck at 40!!
I really do recommend you try aqua aerobics if your gym has a pool and classes. However, don't give up too quickly if you do try it. What no-one seems to remember (and only a really good teacher will think to tell you) is that everything you do in the water takes 7 times as much effort as what you do on land. Your muscles and joints are nicely supported by the water but when you start do take it quite easy until your muscles get used to the resistance and start to build up a bit or you'll end up flat out for a few days! I was able to do aqua when I couldn't do anything else (we had steps down into the water so no problems getting out - an important factor!) and there was another lady in the class who had quite severe ME, bad enough to have a disabled badge, who also found it one of the few types of exercise she could manage.
And re Nordic walking: it's the same action as cross-country skiing which is reputed to be the best cardiovascular workout you can get. I find using poles for ordinary walking is quite helpful on hills because of the leverage helping. MrsO - I think you're quite right to start with the gentler class. If they go off on the brisk walking at the rate most people I see doing it it'll be quite a pace! Lots of people do it here.
Thanks for the tips. I'm booked in for a programme at the gym on Monday and I've got my fingers crossed that I won't have to cancel like last time. The staff are fully aware of my situation (which also includes a knee that's well past it sell by date!) and I do feel I'm much more ready for it this time. My gym have an aqua aerobics class a couple of times a week, so I may give it a go. I certainly intend to do some gentle swimming - maybe one day the gym and another day a swim. I only intend going twice a week to start with. If PMR has only taught me one thing its that I have to be sensible, because if I try to battle it out, it hits back!!
What I forgot to mention in the last post was that just walking in the pool is also amazing exercise and a very good way to start! The lady I mentioned with ME had been unable to do any exercise until she started with the aqua and said to me one day how much she had improved over a period of a few months. You don't notice the improvement until suddenly you realise you have just done something you would never have dreamt you could!
We used woggles and dumbells made of foam to add to the resistance effect - if you join a class and they use them, do start off by NOT using them, just do the movements, then add the woggle or dumbells later and do the actions gently to start with. Ignore anyone who tries to make out you're not joining in properly - the appearance of being well raises its head yet again! Our ME lady found the equipment quite difficult to use because she found it all too easy to overdo it and we all know what that leads too.
All the very best for Monday - no suitable gyms here and if you think Britain is expensive for gym membership...
Aqua aerobics sounds so 'ladylike' I'm hoping I can scale down my enthusiasm a bit! I go to Spain a lot and I'm used to swimming in the sea and being bowled over by 15' waves! Won't be doing that this year, so looks as if I'm going to have to go with your suggestion. I've just looked at the Gym timetable and they have an Aqua Fit on Wednesday so I may just give it a go. I'll let you know how it goes. Do you still have enough snow for skiing :ski: I hear they had 6\" of snow in Rome last week, unbelievable!! Its pouring with rain here and so my new-found energy is being rather frustrated as I intended spending the weekend in the garden. Thanks again for the advice. Keep Well.