tillytop is not doing too well.

suzygirl

Wishing you all the best for your appt tomorrow Tilly.

(((hugs))) x

roses1

Hi Tilly,

Good luck with your appointment, hope you are feeling a little better.

Rose x

dreamdaisy

Good luck for today, tillytillytilly, bell ringing will commence at 11.30. DD

suzygirl

Tilly, just logged on to see how you got on today. Hope it was all you needed x

ironic

Hi Tilly,
I just wanted to say I hope you got some answers and came away with some positive news.
I hope you manage to get some sleep tonight.

Many hugs,
Lv, I x

tillytop

Morning lovely peeps.

Thanks for your good wishes for my appointment yesterday. I was in a "reet lather" beforehand :roll: so I really needed them.

Not expecting anyone to read my "war and peace" below - just that writing it down helps me to clarify my thoughts.

Due, I suspect, to my current state of mind, I was very upset after my appointment but my wonderful G has managed to help me see that it was actually quite positive.

The rheumatology nurse was really lovely yesterday and, having listened to what I told her, took it on herself to retrieve my notes from the registrar who was going to see me and take them to the consultant I had seen before instead.

Consultant agreed with me that I should stop the meth altogether and my understanding is that meth related side effects should subside within
2 - 6 weeks. Somewhat surprisingly, given the new osteoporosis diagnosis I was told that, if I can't manage as the meth wears off, I should up the pred :shock:. He said he didn't have worries about 7.5mg pred or below but recognised that more may be needed and said "if you need to take more than that, well you do". He also said that pred was, health wise probably no worse than the Diclo which I found quite an interesting comment.

I told him that the Rituximab appears to have started to work and he said that, looking at the special "B Cell" blood tests I had a couple of weeks ago, it has definitely zapped my B Cells which is a good indicator of success, although it can be up to nine months apparently before they can say with certainty how well it is going to work.

I didn't think the RA was too bad at all at the moment but my blood results and the DAS show otherwise so I think the consultant was surprised to hear me say that, if the joints continued at the present level I could manage but that what I couldn't cope with was feeling so unwell with everything else.

This consultant was the one who sent me the letter telling me I had osteoporosis and that he had written to the osteoporosis specialist for advice on how to manage it. When I asked him if he had heard back he said "not sure, I don't remember seeing anything" but Alendronic Acid is probably a good idea :roll:. I just thought, "here we go again - just take the pills" with no help, support or advice on what I could/should be doing to help myself. I asked if he could explain the diagnosis to me in terms of how advanced (or hopefully not) the osteoporisis is and he printed out the results, looked at them and explained that he didn't really understand them because it's (understandably) not his area of expertise. I know the hospital has specialist osteoporosis nurses so I asked to be referred for some proper advice and help and he was happy to do that for me. I just find it so upsetting and frustrating that, if I hadn't asked I would just have been left to get on with it. The National Osteoporosis Society has some good information about appropriate exercise but their leaflet states that it is aimed at otherwise fit, 70 year olds (or something like that) and many of the exercises involve things I can't due due to the RA. Conversely, I have seen exercises suggested elsewhere for those with restricted mobility, thought "oh I could try that" and then read that you shouldn't do these exercises is you have osteoporosis of the spine. I am trying so hard to find ways to help myself get better and trying to get proper help and advice feels like pulling teeth sometimes!

Finally, I asked for some physio - for my neck and shoulder and hopefully for some advice on how I can strengthen my muscles to support my joints as advised for RA/osteoporosis and he said he would do that. He said that I should try to walk as much as I can (which I am already doing) but said "if you can't, you can't" which might be true, but not very helpful!

Thanks again for your support and for reading this (if you haven't lost the will to live by now )

Tilly xxx

dreamdaisy

I've just woken up and dunno realy what to say. It's good that the meth has gone (feeling that ill all the time despite better joints? Is it worth it? ) and with official 'blessings' so I hope that does begin to leave your system and you feel physically brighter soon. Of course their answer is more pills, it always is. Start eating the mini-milks (lotsa calcuim, not many calories), walk every day (once round the block should help, if you have a block - oooooooh! Tilly from the block, you go girlfriend!) and don't Alendronic until you have seen someone who knows summat about all this. There are new meds coming thro for OSPs all the time, AA is old hat now. (you know the AA I mean, no, the road one or the anonymous one. :roll: ) DD

PS. For someone who who didn't know what to say I reckon I ain't done too bad, especially now I've removed the typos!

tillytop

Hey DD!

Thanks for your post - you did make me chuckle - "go Tilly, go Tilly" and, as you said at the end of your post, for someone who didn't know what to say, you said some very good stuff!

For me the meth side effects are definitely not worth it (please remind me of that if I am totally seized in a few weeks time ) and, given that it has been nearly 2 weeks now since I have taken any, I hope that some improvement is just around the corner.

I had come to the same conclusion about the "AA" in terms of waiting to see what the osteoporosis specialist says. I also want to get the meth properly out of my system before adding anything else into the mix. You say about AA being "old hat" and interestingly enough the consultant yesterday did say that there are now "biologics" for osteoporosis and it might be that, given that I am "still young" (which is very flattering from someone who looks about 16 as he does!) that may be an option. But as I said before, if I hadn't asked to be referred I would have just been left to get on with it with the "AA". As you say, I need to make sure I get lots of calcium (I am SURE that Smarties have lots of it) and will continue to walk round the 'hood" as much as I can!

Hopefully going out for tea and cake with my Mum today so looking forward to that (we've missed the last couple of tea and cake Thursdays so think I'd better have double helpings of (calcium rich ) choccy cake!

Thanks again DD.

Tilly xxx

roses1

Hi Tilly,

Tea and cake Thursdays sounds lovely!


Like your wonderful G said it was quite a positive appointment , you asked the right questions and got the referrals you need , you got off the mtx and i would think it it is wise to get that out of your system before introducing others. Good luck with the other appointments . It does seem sometimes we have to prise information out of these health professionals, its like they in the secret service or something! :shock:


Just thought its Friday how was the cake y'day

take care
Rose x

suzygirl

Hi Tilly, glad to hear that you pushed for referrals for the osteo. I am sure I have heard of new meds for osteo. Can't remember specifics at present. Lets hope without the meth you feel better and dont have to up the pred. The consultants do seem to have differing views of pred, although I suppose it depends on the patient.

Glad to hear your hubby helped you, it is difficult not to get upset over appts. It is hard facing the reality of it all. Still tea and cake should help!!!! Lol Have a slice for me!

Hang in there, you are doing really well x

skezier

Hi Tilly,

Like Rose is casually enquire about the availability of cake?

Flower there is some positive there although I am staggered nobody had thought to get you an appointment for the op consultant. Maybe the nurse will be able to as you have questions that really need answering.

I know it can be hard to feel ill all the time and mtx isn't for everyone so its good your off it. With a bit of luck it will mean you feel better in your self and don't have more trouble with the bones.

Hey glad the Rituximab is doing its job and Tilly I so hope that you will start to feel so much better.

Hop you have a good day flower and don't forget to save a cake.
CDM, Smarties and a bottle of unpasteurised milk with tea in the owl box and a nudge form the best Deer. Love and a ((((( ))))) cris xx

julie47

Hi Tilly

Well I am pleased that you had your wits about you and asked to be referred to a osteoporosis expert. I honestly don't understand why they don't just do it automatically and it is upon our selves to give them a flipping nudge. :roll:

Have a lovely cake and tea day today

Take care,
Love Juliepf x

tillytop

Thanks all for your support - and thanks Cris for the supplies in the owl box and the deer nudge! So much appreciated..

Tea and cake out yesterday was good thanks.

I just wanted apologise for not feeling able to do much in the way of supporting others on here at the moment but I am thinking of you all...

Lots love

Tillyxxx

skezier

Hi Tilly,

Its not always easy to hep others when your not doing too well so please don't apologize flower.

Leaving more supplies in the own=l box but....

Did see the deer with a ladder earlier so hope they are still there for you later....

((((( ))))) and a hope you will feel so much better soon,. Cris xx

dreamdaisy

Ummmmmmm - this is typed with affection: no apologies are necessary, you twerp. It's your turn for some support, you are always there for others and this is a chance for us to return the compliment (and, hopefully, help you thro this rough patch). We have classic Bank Holiday weather here - it's stair rods and the lights are on. Flaming August. :roll: DD

weejean

Hey Tilly

So sorry I missed your appointment on Thursday :x
It is a good thing that you are confident enough to ask for expalnations and also to ask for referrals etc. There are so many people out there afraid to ask and question things and they must be left feeling very confused and frustrated after their appointments. I hope you continue to feel better and you are so lucky to have such a wonderful family who are there to support and listen to you when you need them. The Tea and Cake Thursdays thing sounds good and I will be making a similar date with my Mum on a weekly basis (i love cake). Hope you have a wonderful weekend xx

julie47

Hi tillytop

Just popping in with extra hugs (((((((((()))))))

Thinking of you
Juliepf x

suzygirl

Tilly, just stopped in to wish you a fab bank holiday weekend. It is sunshine and showers here, with cold spells. :roll: Usual bank holiday weather. Hope you are enjoying yourself whatever you are doing.

hileena111

Hi Tilly,
Just came in to say I hope you are feeling a bit better. What sort of weather do you have there? it was windy and good drying weather earlier but has just started to pour down.
Glad you had your wits about you and asked all those questions
Love
Hileena

suzygirl

Hi Tilly, hope you are having a good bank holiday. It is cold here and not very nice at all. Seems as though autumn is in the air. I wouldn't mind, but I blinked and missed summer

Am sitting on sofa with Izzy curled up next to me.

tillytop

Thanks Peeps for your continuing kindness and for continuing to post on this thread. So much appreciated.

Well, just as I was beginning to see significant signs of improvement from stopping the meth, my pituitary whatever it is has decided to play silly beggars, big time, and I have done literally nothing the past 4 days (5 including today) other than sit dripping in front of the fan or shivering under piles of blankets. It is relentless and I feel like a wrung out sponge and thoroughly miserable. One thing after another and I just wish it would STOP! But I have started following the eating plan which got me over this last time round and I am trying to hold onto the fact that it wasn't just a fluke. If it works as before, I should start to see a dramatic improvement after about 10 days - and today is day 4 - so fingers crossed. I know there are lots of others having similar problems so I will report back in due course. If it works this time round it DEFINITELY isn't a fluke!

Thinking of you all.

Love Tilly xxx

traluvie

I really do hope you feel better soon luvie..

Thinking of you and sending you BIG hugs

(((((((((((((((((((X))))))))))))))))))

stickywicket

Well done on sticking with the plan, Tilly. It's not easy when other bits are doing their best to mess things up but, as you say, only one way to find out. It would be so much easier if we could deal with this stuff one bit at a time, one illness at a time, one lot of meds at a time. Stick at it. I am impressed.

tillytop

Thanks Tracy and Sticky!

Coming up for a whole hour without a hot/cold flush! It's such a relief to have a bit of a break! Hope I haven't jinxed it by saying so though) :roll:

Tilly xxx

suzygirl

Tilly, I find the whole hot flush symptom a real misery, it keeps me homebound at times. :sad: So I really feel for you. Lets hope the eating plan works for you. You so deserve some relief.

Big (((hugs)))