Helloooo. Is there anybody there!!

Hallo L-E. Glad to see your post both for your own good news and Jake's. There was bound to be a reaction of some kind and no wonder he's tired. maybe that's telling him not to go too fast too soon.

Glad,too, that the site was not on the blink. We're such a chatty lot that you do wonder when we have four days of nothing.

Also, I find I don't have the confident attitude to things generally that I used to ( I blame the Pred.! ) and find myself wondering if my computer has a glitch about four times a day. I have had a new router, courtesy of Virgin, for a fortnight and don't dare install it. How sad is that? It's supposedly going to help with the pathetically slow speeds we get out here in the sticks. That would certainly be welcome but what if I get it wrong and end up with nothing? Oh dear. My old one works via USB but the new via the Ethernet connection. I seem to have a socket at the back of the computer that matches the cable but don't feel very sure. If I disappear you'll know it was the wrong one!

Watched the wedding and thought the abbey looked wonderful. Have promoted Rowan Williams' voice over James Mason. Less said about some of the frocks the better but bride and bridesmaids a picture. Good luck to them.

Hi Lizzie-Ellen, Betty and all,

Good to have the chat going again...I thought everyone must have over celebrated the Royal Wedding and couldn't focus on their computer screens :lol: :bubbly: :yikes:

I thought Catherine looked fabulous...really elegant and her mother and sister could give others a lesson in how to dress :wink:

Lizzie-Ellen...hope Jakes check up went well and delighted to hear that you are getting back on track also.

I have had a fair bit of pain the last few days, so went back up to 11mgs as I could not do anything and was getting mightily fed-up and a pain to live with :oops: . I am seeing my rheumy next week and know he is going to suggest the methotrexate again....but I really don't want to rock the boat by taking yet another drug, so I might just pretend that I am still down to 9mgs :wink: .

Hope everyone else is well.

Love, Pauline.

Wow

I started to type a message and then - blank - I come back and two more messages.

Hope the hospital visit with Jake goes well and come back and tell us please.

Lizzie Ellen, take care and get some 'me time' in so the tiredness does not continue. It is no wonder all you and your family have been through, but the worst is over and the only way is up.

My replacement car (another oldie like me) delivered last Tuesday (where has the week gone) and its such a challenge driving a different car after 16 years with my old friend.

Loved the wedding, the frocks, the trees et al and glued to the snooker. Now have square eyes.

Cheers

Dublin

I meant to say, ask the Rheumy why he is so keen on Metho - what is it going to do for you that is going to make it better for you.

You could also read Margaret's story on Metho on www.pmr-gca-northeast.org.ukSo far Margaret seems to be doing OK on it, but still on 2mg of steroids as well. Before the rheumy put her on it, she had been stuck on 10mg for quite a while.

I gather the use of Metho is used as a steroid sparing agent or because people cannot tolerate pred.Mind some people have problems with the side effects of metho. But them side effects are present in most medication anyway.

It is a very personal decision to make.Good Luck

I kept looking in over the weekend and assumed you were all BH'ing and recovering from wedding fever! Couldn't agree more about some of the outfits (especially the silly hats :roll: ) and some of them should really have known better!

Glad to hear both Jake and grandma are improving!

Pauline - have you tried taking your pred as alternate day therapy now you are down to 10mgs? I tried going back to daily as I'd really struggled the second half of last year, going back up to 20mg/2 days from 13.5mg/2 days in the spring, and then unable to reduce at all. The daily dose was NOT GOOD, I didn't need more, just didn't feel as well in all sorts of ways. Anyway, I went back to alternate days and am reducing half a mg at a time (you'd think it was hardly worth it :wink: :oops: ) BUT so far I have had no problems at all :lol: .

Over the weekend I found another textbook online which had a detailed discussion of the alternate day regimen and its advantages - strongly recommended except for GCA and Crohn's (I think) as it means there is almost no adverse effect on the body as there is so much time between doses where the body has no corticosteroid acting on it. I mentioned when I did my knee that I actually felt BETTER for a couple of days so the adrenaline must now be flowing (it's just over a year since I changed to ADT).

As to the 4 days of nothing - maybe those of us who have been using the other new forum have been chatting a lot there rather than here. I have this feeling that this is the place to look for answers to a question whilst the other is being used for more fun and sillyness :wink: I know Granny Moss did mention it on here in a post - if there is anyone looking in who might feel left out! You can get there via the pmr gca northeast support group (that is right isn't it???? :roll: I can't remember how I got there now - too many other things going on!)

EileenH

Hi All,

yes still here, I also was wondering what had happened to everyone, but had nothing much to contribute myself.

Finished my bit of decorating today, I've been taking it very slowly.

Agree with all said about the royal wedding, some of those 'hats' looked like they'd been borrowed from the tellietubbies !

My husband has a couple of weeks off soon, so won't be on here for a while. Not very techie, no laptop !

:wah:

I'll wait until we're back and rested before I think about reducing any further, coping well on alternating 1mg / 2mg at the mo', hope everyone else is doing as well, and making the most of the lovely sunshine as well.

No doubt that will change when we are on our UK hols !

Oh, what a pessimist !

Best to all, Julia (DD)

I looked in a couple of times, but also assumed that a combination of the weather, the Wedding and Bank Holidays were keeping everyone occupied.

I really hadn't any contributions myself, wasn't going anywhere or doing much as I failed the planned Pred reduction but have pulled things together now by going up to 22.5 and will stay there for a while.

Weather is warmer here today - the nasty cold wind we've had does me no favours - but we need rain so badly!

Nefret

Hi Mrs K & Eileen,

My rheumy seems to think that Metho is the \"Wonderdrug\" that will make me able to reduce the pred at a faster rate :roll: .

I have read Margarets story on the website and also spoken to a few people I know who are on it for other conditions and I am still not convinced that it is the way to go.

I have got used to the side effects of the steroids at this stage....limbs not fit for public viewing because of bruise etc :oops: , but the metho seems to bring a whole new set of side effects :cry: .

My daughters riding instructor is on it for a form of arthitis and she told me that she cannot take any lessons on the day that she takes the med or the day after as she is just physically incapable of doing anything....and she is only about mid-twenties :!: :? ..

I have enough bother with functioning as it is without having to take a drug that will wipe a couple of days from my week :shock:

Eileen...I took 10mgs today and didn't feel sooo bad so I think that I will try the alternate day and see how that goes for me as my body just does not seem to want to accept 9 just yet.

I know that all of our \"professionals\" want to get us to as low a dose as possible.......but sometimes our bodies just do not want to co-operate :roll:

Isn't life witrh PMR just wonderful :?: :?:

Love to all , Pauline

I'm one of those on Methotrexate and it does work for me..........took only 6 months last year to get to 5mg from 30.

I did get down to 2.5 earlier this year, then ran full tilt into a GCA flare-up, having to go up to 40 again. That was on March 6th. Am now on 22.5 - had trouble dropping down to 20, so going a bit slower than they would like.

I have to get off the Pred - or get it down to an acceptable level - as quickly as possible as I have diabetes, osteoporosis, hypertension and heaven knows what else, all steroid induced.

Maybe I was lucky, but to begin with I had no side effects from the Metho. I had been on it for 10 months when I suddenly got absolutely horrendous mouth ulcers and had to lower the dose a little to get rid of them. No further problems so far (I may regret saying that).

Nefret

Pauline - I hope you haven't misunderstood what I said about alternate day therapy - what I do is take double the daily dose every second day, just so we're clear about what I mean.

David was given MTX when he had cancer - he hated it, he was like a block of ice for hours after being given it and he felt really rough - a higher dose I know but it does seem to remove at least a day from your week for most people when you are on weekly doses.

Other option: can you make the reduction much slower? I'm reducing at half a mg at a time: 20mg every second day, then 19.5mg every second day, 19mg, 18.5mg and so on. I have got to 17.5mg/2 days with not even a wriggle so far. Pill cutter and 1mg tabs to make the dose up above the nearest multiple of 2.5mg. I stay on the new lower dose for about 2 weeks before trying the next drop and so far haven't noticed any problems. Yes get to a lower dose - but in tiny steps!

Nefret - were you not given folic acid along with the MTX? The MTX stops the folic acid metabolism and that is what causes the mouth ulcers so you are supposed to be given both together and if you get ulcers you need more folate and not necessarily less MTX.

EileenH

Yes, was given the FA immediately along with the MXT and that has gone up several times, now on 1 tab x 6 days. Seems to be working ok, no problems (with this, at least) since last Autumn.

Will think hard about the next reduction, the 22.5 is doing well, I am positively sprightly today!

Nefret

Great news Nefret :surfer: (the most energetic emoticon I could find!). Hope you continue to feel sprightly!

Love from Lizzie xx

Hi everyone I'm here as well :D I was busy with the grand children over the holidays then had work to do in the garden. I try to do as much as I can on a good day then on the bad days I don't do much ha ha

I'm still on 10 mg but on my next visit to the doctor i will get some 1 mg tablets from her so that later on i can go down 1 at a time.

how is everyone doing?

Hi all,

Body seems to be improving a bit again taking 10mgs one day & 9 the next so fingers crossed that the extra half mg is doing the trick .

If this does not work I will try your method Eileen.

Had a LOVELY visit with the dentist today as I managed to chip a bit off a back molar, so I'm just waiting to get some feeling back into my jaw before I can eat......thankfully it wasn't at all painful, except on my finances :wink:

Hope everyone is faring well.

Love, Pauline

Dublin. Don't wish the feeling back too soon; I had my most comfortable day in weeks after the dentist numbed everything above the collar bone!