Back from appointment with Rheumy

joon51

Been going to hospital for 10 months now and on my 3rd doc.

Didn't quite know what to make of it.

Sat down he said my inflammation markers were up sort of new that, he then said he doesn't think the hydroxy and meth are suiting me as they don't seem to be doing there job, so I have to stop the hydroxy tomorrow, I am back on steroids 5mg, got to take 5mg for 2 weeks then 4mg for 2 weeks and keep going down if I get any pain or inflammation to stay on that dose till it settles. I am not to go back till June 13th when he will decide what route he will send me regarding my meds. He gave me some amitriptyline to help me sleep at night as I get achy legs at night.

Toni how did you get on at your appointment today?

DD how are you feeling today, hope your knees are alot better

Take Care Junex

dreamdaisy

Right, I think you are dong OK with this rheumatologist, he isn't rushing into any rash decisions, and that has to be a good thing.

A 5mg dose of steroids is hopefully enough to give you a small boost and start helping matters. Two weeks per dose level sounds like a plan - I am doing three per level as I am reducing and so far, so good (tho the rot is beginning to set in, I am down to 10 and it ain't quite enough!) I take it you are to continue with the meth? What dose of that are you taking?

A tip for the amytryptaline - I have read on here that those on it tend to take it between 7 and 8pm - that way they have a good night but don't wake up all groggy and foggy. I hope it helps you sleep.

My knees? Less raw and sore but still very painful, as is the ankle she did. I am humira-ing tonight so hopefully that will shove me back up to moderately grotty, it would be nice. Thank you for remembering! Take care. DD

joon51

Hi DD sorry your knees and ankle are still very sore. The rheumy wants me to stay on meth (I am taking 25mg per week), until I see him although he doesn't seem to think it's working, he didn't say what he would put me on instead. I have to go back on the andr acid thing the one you take once a week and must not lay down. The having no energy part is really getting to me, you would have thought there was something they could give us. The rhuemy did say if I get signs of a flare or any aches to take the same dose of pred for extra couple of weeks. He thinks it's the steroid got it under control not the other meds. I managed 1 week without steroids, was so pleased with myself felt incontrol very short lived. You seem to be very clued up on the med front and thankyou very much for all the good advice you have given me over the months.

Take Care Junex

barbara12

Hi June
Sorry I dont know about your meds, but I do hope they can get things under control, one thing I do know is that amitriptyline really works at night, I take it around 8.30 because it takes sometime to kick in, and then you are not groggy in a morning.
Good luck with everything
Barbara x

traluvie

Hi June,

Sounds like your rheumy is being cautious and wants to find what suits you best...
How long have you been taking the hydroxy and that for??
Glad to hear the steroids are helping, they helped me but i am reluctant to have a second injection as my rheumy scared me when telling me all the side effects lol,, but i think i will have to give in as i have been suffering again recently...
Amtriptyline i take.. i started on 1 tablet and have upped it to 2 now.. i found it worked wonders for me the first few weeks.. then i was up again in the night with pain so gp said try 2.. worked again but now suffering again... so will speak to gp..I hope they work for you.. they do help alot but i just think my body is getting used to them lol...
DD is right, it is best to take them between 7-8..
The tiredness is very draining.. i have had to have a sleep in the day over the past few days.. thats a first for me...
It can get very daunting at times.. nice that we can all talk and support and understand eachother..
Hope you get a good night sleep tonight..

frogmorton

Hi June

Thanks for the update....l take my amitriptyline at 8 pm and no later. they take longer to work than you think...2/3 hours for me and the first time l took one next day l was washed out. After that l have been fine.

The pred will work you know they will but I hope he has another plan up his sleeve for next visit....

I got on fine thanks for asking saw registrar and all was well agreed to keep everything as it is...add extra colchicine if needed and extra co-codamols as well as the patch.

Then I got home.....and the fingers on my RT hand swelled up

TYPICAL

Love

Toni xx

dreamdaisy

Blasted alendronic acid, god that stuff gets my goat. I know it's no biggie, having to sit up for 30 minutes, it's the empty stomach bit that gets me growling. I do mine on a Sunday so as usual I wake at about 3 or 4 am, with pain, then remember it's AA day so I shouldn't take painkillers, then lie there debating whether to do the AA there and then, or hang on and do it at more civilised time as if that makes a difference. I don't enjoy the ensuing six hours or so of super-grottiness that follows either. I bet I'll still get osteporosis anyway, I've been inhaling steroids for years for the asthma.

That's a pretty big dose of meth, it's a shame it isn't doing much for you but then my experience of it has been much the same. What else have you tried? Do you go to Ipswich? I do, I see Dr Lane, well I do when she isn't otherwise engaged in breeding. As for the tiredness, well it's part and parcel of the arthritis game - our bodies are so busy attacking us they have no time to provide us with energy. It does get one down from time to time, doesn't it? I hope the 5mg steroid dose is helping - to be honest that has been the only med that has ever made a real difference to me in how I feel and cope. Lovely, lovely stuff it is. I keep lying to myself that life without it will be better whilst knowing full well that it won't. Never mind, it doesn't matter. DD

joon51

barbara12 wrote:

Hi June
Sorry I dont know about your meds, but I do hope they can get things under control, one thing I do know is that amitriptyline really works at night, I take it around 8.30 because it takes sometime to kick in, and then you are not groggy in a morning.
Good luck with everything
Barbara x

Hi Barbara , my rheumy said to take the amitriptyline 12 hours before I get up, I took it at 5.30pm as I tend to get up at 5.30am, well I had to go to bed early I was falling asleep best night sleep I have had for ages
Thanks for the Luck
Take Care Junex

joon51

traluvie wrote:

Hi June,

Sounds like your rheumy is being cautious and wants to find what suits you best...
How long have you been taking the hydroxy and that for??
Glad to hear the steroids are helping, they helped me but i am reluctant to have a second injection as my rheumy scared me when telling me all the side effects lol,, but i think i will have to give in as i have been suffering again recently...
Amtriptyline i take.. i started on 1 tablet and have upped it to 2 now.. i found it worked wonders for me the first few weeks.. then i was up again in the night with pain so gp said try 2.. worked again but now suffering again... so will speak to gp..I hope they work for you.. they do help alot but i just think my body is getting used to them lol...
DD is right, it is best to take them between 7-8..
The tiredness is very draining.. i have had to have a sleep in the day over the past few days.. thats a first for me...
It can get very daunting at times.. nice that we can all talk and support and understand eachother..
Hope you get a good night sleep tonight..

Hi Tracy I had the best nights sleep ever last night, hope you did as well.
I had been on Hydroxy since October along with meth the rhuemy said yesterday that he didn't think the were doing there job so first he has taken away the hydoxy will see him in 10 weeks to see where we will go from there, I have been taking my meds for inflammatory poly-arthritis which I think I am right by saying it's a sero-negative type arthritis
Yes it is very nice that we can offer one another support, I am still working full-time and I know friends at work just don't know what we are going through

Take Care Junex

joon51

frogmorton wrote:

Hi June

Thanks for the update....l take my amitriptyline at 8 pm and no later. they take longer to work than you think...2/3 hours for me and the first time l took one next day l was washed out. After that l have been fine.

The pred will work you know they will but I hope he has another plan up his sleeve for next visit....

I got on fine thanks for asking saw registrar and all was well agreed to keep everything as it is...add extra colchicine if needed and extra co-codamols as well as the patch.

Then I got home.....and the fingers on my RT hand swelled up

TYPICAL

Love

Toni xx

Hi Toni Glad things went well for you what is colchicine haven't heard of that one before. Had a great nights sleep don't think I was with-it till about 2pm, something normally starts to swell on me a day or two after my appointment, me thinks some-thing is stirring or swelling lol

Take Care Junex

seamonkey

Hi June,
Hi there, ihave just been reading you post and replies and am interested to see that you take amitriptaline for night time pain in legs? am wondering if this would work for me. I wake many times in the night with sore legs and heels. The thought of a full nights sleep is wonderful. I may see what doc suggests nixt time i see her, I hope your steroids get things under control for you,
wishing you well
seamonkey

joon51

Hi Seamonkey I can only let you know my experince had one last night best night sleep for ages, I was just so relaxed, I am rather hoping if I have a good nights sleep that prehaps I won't feel so fatigued will let you know.

Take Care Junex

joon51

Hi DD Third time lucky I hope keep losing my post replies. I do hope your knees and ankle are improving. Feels like my knee is up to its tricks again, we will see. I go to WSH they are a nice lot over there. The more I think about it I think the doc might of been a bit fast in taking me of hydroxy I know they are the proffessionals but we all on here know that we get flares keep looking at my fingers think they are getting fatter will wait and see. I slept great last night already took my pill tonight here's hoping for another good nights sleep

Take Care Junex

carola

I am on similar meds incl the meth, hydroxy and steriods and I also used to suffer the leg thing at night. I took x2 tramadol at bedtime and it seemed to sort it.

Hope you get some relief soon AND some answers over time. It is good to hear a Rheumy say that the meth and hydroxy aren't working so going to try something else though.

Take care
Carol

skezier

Hi June,

I am glad he is at least trying to help you and hope that the new meds will work for you. I had preds a while ago and reacted to them but they did do the job. was on 35 ml a day though.

I just seen your on 25 mtx is that the tablets? See I was for a while and they have done something to my stomach so I am now on the jabs and at present they are at 20ml instead. I see my rumo next month and tit might go up to 25 again I don't know yet.

What I wanted to say is any stomach pain get your self in the jabs. I didn't i just put up with it for too long till i couldn't any more and refused to take them.

Good luck though and hope it will start to help you and like Toni I hope he does have something else up his sleeve for your next visit. Cris x

julie47

Hi june

Sounds good that you had a good nights sleep the other night and I hope you slept well for a second night in a row. (pass some med over here please)
I hope the steroids help until your next visit and that they have by then decided which route you should take.

Take care,
Juliepf x

(toni I hope your fingers have reduced in size by now)