Hi to all, just an update.........it seems that doc was right; after 4 days pain has been relieved by 75-80%. I feel that this is a long standing issue which has crept up on me and I didn't realise just how much pain I had until I hadn't got it! That is how PMR started with me too, no sudden acute pain but pain building up over a matter of months, even years.
Just been for bloods, Rheumy is ringing me when he has the results - and if they give him any clues, I will be surprised. Never any rising inflammation markers unless I have something other than PMR/GCA - like the severe chest infection I had last year.
Feet already swollen, legs following on, but that is a small price to pay for being able to look out of the window and see a beautiful day out there. I hope everyone is enjoying it and that the sun cheers everyone.
Nefret
Hello Nefret
In one way a bit of a blow that your pain relief seems to confirm GCA and you're on the steroid roller coaster again, but in another way thank Heavens for those steroids that give you that amount of pain relief. Plus you seem to have struck lucky with both your new GP and new rheumy. And you're living in a lovely part of the world so you can enjoy this lovely sunny day in the sea air.
Take care,
MrsO
........just to say that status is still quo! Still on 40mg and will be there till I see Rheumy on Wednesday. What happens on Wednesday? Only time will tell!
The steroid legs have found me over the weekend and I can now move with all the grace of a couple of bull elephants in must.
It is a relief not to have the continual pain in my neck and head..........I simply did not realise just how much I was struggling with it. Insidious little beastie!
Will update after appointment, till then am going to enjoy this lovely weather.
Nefret
The doc's opinion after a good prod and check was that I can begin to reduce the Pred, so today I am on 35mg. Will stay there for two weeks and then try to get to 30mg.
Although I am in a worse spot as regards the steroids than I was this time last year (I'd hit a wall at 20) I'm obviously better off in that I am not now working and not moving house again.
I have a 'routine' appointment for July and will see how far down I can get by then - assuming no relapses, walls or anything else happens.
I'll admit to still feeling a little low..........I was so pleased with my reductions, but this will teach me not to take anything for granted.
I am going to potter outside in the garden today in this lovely weather; that should lift my spirits.
Nefret
Hello Nefret
So sorry to hear you have had such a bad time recently With steroids the only way is down ( we hope ) !!
The plus is you now know how to manage yourself and can control the situation more When i had got to 4 from 20 I wasnt really listenning to my body and my bloods had been a bit erratic but I just wanted to get there and unfortunately I had to go back to 15 now I do really see how I feel before I do anything
I do so hope things improve for you
Mrs G
Hi Nefret - so glad to read better news from you that you are heading in the right direction again :D and I have everything crossed that you will continue reducing faster this time and successfully. Bestest of luck :goodluck: and hope the \"pottering\" in the sun lifted those spirits today. 8)
MrsO
Just another update.............three weeks along and have done one week at 35mg now. Have got all the side effects which Pred kindly gives me, but the worst thing so far is the stomach bloating. Although I have had issues with it before it's far worse this time round..........I am so swollen that just getting up from a chair can make me breathless. I also have a hiatus hernia and the acid reflux has started up again (Mrs. O, Mrs. K, am going to try the lemon trick; up till now has been well managed and have not needed it).
Rightly or wrongly, I think it is the uncoated Preds which I am taking. I have an appointment with the doctor next week and I am hoping she will accept my case for the enteric-coated ones, or at least enough for me to see if they help - if they don't, there's no choice!
Have also acquired the 'steroid legs' big-time - but I've done that ballet before!
Nefret
Nefreet - very likely, especially at that dose. Don't ask - demand enteric coated - very politely, of course. :lol:
EileenH
Hi Nefret
That must be so uncomfortable with the stomach bloating - it sounds like fluid retention (didn't you mention in a previous post that your ankles were swollen as well?) which is probably aggravating the hiatus hernia and the acid reflux - good luck with the lemon trial (a third in a glass of warm water before each meal is the recommended amount).
I have never had a problem with getting the enteric coated pills on repeat prescription with Boots but then I haven't been able to take the stomach protection meds either so perhaps the GP is 'playing safe'! Going by what you've said about your new GP, I'm sure she will agree the need for you to be on the coated pills and perhaps rather than suffer until your appointment next week you could request a prescription for coated pills over the 'phone.
Take care.
MrsO
Hi Nefret
I sympathise about the reflux. Mine was controlled by Omeprazole until I started the 1mg uncoated tablets (stopped them after a few days).
When my surgery decided to swap to the cheaper uncoated tablets in general, I refused to take them from the pharmacy and booked a call with my GP immediately - I made my case over the phone, and he authorised me to have the coated ones.
If I were you, I would not wait with that discomfort till next week. Why not give them a ring now?? You shouldnt have to suffer. I have also managed my reductions without taking the 1mg tablets, so I have only been taking 2.5 and 5.
Out of interest the GPs in the practice had so much grief from patients having stomach problems with the uncoated that they have changed tack now and have reverted to the coated ones.
Beev
I had no problem getting the coated ones; I think she believes it's simply the whole situation aggravating the stomach rather than just the tabs and she could be quite right. However, she had no hesitation in prescribing the enteric coated tabs and obviously, if there is no improvement, then I will need to see her again.
I had a full check up this morning and (rather cautiously) things are going in the right direction. Down to 30mg as from today, BP is fine, WBC is fine (that seems to be the only indicator that things are amiss as far as the bloods go; it hops up and down when it's upset). I have quite a lot of fluid retention, still some leg pain and the shakes.........hopefully they will begin to disappear soon.
All in all, I really couldn't expect much better! and such a lovely day here, too.
Hope everyone is getting the sun and feeling pretty wellish for it.
Nefret
Hi Nefret
Good to hear better news from you in that you're down to 30mg and your lovely new doc has prescribed enteric coated tabs. That's a good sign too that the WBC is normal - I remember being told mine was raised when I was in A&E just after commencing on Pred - I never really discovered whether the PMR or the steroids were the culprit but certainly as the inflammation reduced the WBC returned to normal. Hope you continue with a straightforward reduction and the side effects disappear soon. At least you've got the weather on your side now and long may it continue! :star: 8)
MrsOx
Hello Nefret
Pleased things are improving for you Yes this wonderful weather is making us all feel better isnt it Lets hope it stays !!
Mrs G
Hi Nefret
Glad things are improving and that you have the coated tablets now. it will be interesting to see if your stomach improves as a result. It's so difficult to sort out what is causing what isn't it?
Beev
To keep the record going, have dropped to 25mg as from today. Will stay on that for 2 weeks and then (hopefully) do a 'slide' over 8 days down to 20. Not sure what will happen after that - if I get there, of course - as 20 was my wall last time round; will see what happens.
The original pains and problems which I queried in the first place have not made a return, so have my fingers crossed.
Still getting the high-dose Pred probs..... bad back spasms if I try to walk too far, legs weigh about a ton each and I have had to drag all my 'fat' clothes out of cupboards and bags.
Happily for me, there is a big difference between this year and last, I am under no stress or pressure as I was last year and I feel so much better in myself this time round. The early Spring weather has been a bonus for me, last year it was a very cold and late Spring.........remember going out over the Easter holiday and feeling, um, er......awful!
Good wishes to everyone else on the Pred helter-skelter!
Nefret
Hi Nefret, all the best for the next reduction!
I have always kept a PMR diary, not just medications but also the main things that have been happening, and weather if relevant, just in a few words. So it is interesting to look back and see what other things were going on and effected how we felt. Was it this time last year you were moving? It certainly was an interminable winter then but we can't complain this year after the snow and ice last Nov/Dec! :cry:
It must be depressing about the clothes - still if you've come down in size before you'll be able to do it again I'm sure.
Take care, with love Pam
Hi Nefret
Fingers crossed for that \"slide\" down to 20 to be a smooth one. If you weren't on the MTX at this stage last time then, hopefully, that will make for a much easier reduction this time. BTW did the cucumbers come from S--------s or T---o? Like you, I love them and fancy having a go! Take care.
MrsOxx
T....co, Mrs. O. They are also doing aubergines, peppers and tomatoes in the same range. I was tempted by the peppers, but don't want to bite off more than I can chew!
Nefret
Wasn't able to make the reduction to 20mg - it lasted 2 days. While I had nothing to do but watch the Wedding, the pain and discomfort were just too much and on Saturday I put my other head on (the sensible one) and went up to 22.5.
Much more comfortable now but still find it so difficult to believe that such a comparatively small amount could make such a difference.
Will stay on 22.5 for a couple of weeks; my next check up is the 19th May so might stay on it till then.
Nefret
I am currently reducing by half a mg at a time - so really a quarter of a mg per day as I do alternate day therapy! I was rather further down than you at the equivalent of 10mg/day and I have been trying 1mg at a time every so often for a few months and it was hopeless, I just felt miserable. I have now reached 17.5mg/2 days - I stay at the new dose for about 2 weeks before trying the next drop and so far it's been OK. It just shows how sensitive you can be to the decrease in dose.
I assume you use 2.5mg pills - really looks like a couple of weeks at least with one day at 22.5mg, then a few weeks with 2 days. The thought of 25 to 20 over just a couple of weeks really seems quite a lot to me when I think of your history.
Hope you are feeling better now though,
Eileen