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FIONA752
#1 Posted : Sunday, June 13, 2010 9:07:50 PM Quote
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Joined: 12/4/2009
Posts: 312
Hi everyone!
I have been away on a mini-cruise from Plymouth to Santander on the
"Pont - Aven". Two nights onboard the ship and three nights in Santander,
Spain. (It was fabulous, but not the point of this post.)
I was incredibly lucky, last year, to have 7 months of remission of symptoms
from my R.A.
Unfortunately, after the first couple of months I injured my Spine and so was on
strong pain medication for a catastrophic collapse of a Thoracic vertabra.
(I have now managed to stop the painkillers completely, but still know that I
have Spine damage if I do too much cleaning, etc.)
At my visit to the Rheumatologist a few weeks ago, I told him my symptoms of R.A
were still in remission and so he requested that I cut down my R.A medication, which is
Plaquenil - Hydroxychloroquine Sulphate to one per day instead of two to see how I
got on.
I persevered on this lower dose for two weeks - but all my R.A
rubbishy pains and stiffness returned!!!!
(By the way my painkillers for my Spine did not touch the R.A pain!)
Even now, after weeks of being back on my original maximum dose of Plaquenil,
I have not been able to achieve the wonderful freedom from symptoms of R.A
that I had for those great 7 months!
But I persevere!
Love to all,
FionaRollEyes
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LynW
#2 Posted : Sunday, June 13, 2010 9:39:59 PM Quote
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Location: Thornton Cleveleys
Hi Fiona

Sounds like a great break, love Santander, so typically Spanish, although a long time since I was there!

Sorry to hear you are having problems. Doesn't it just seem that what takes years to achieve can be dashed with a couple of weeks reduced medication? Really tough Fiona, but do stick with it and hopefully things will soon improve. If not, perhaps time for a change. Watch out with that cleaning!

Lyn x
My son, Ian, completed the BUPA Great North Run on 15th September running for the National Rheumatoid Arthritis Society (NRAS). You can read his story at http://www.justgiving.com/ianlukewilson

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Calmwater22
#3 Posted : Sunday, June 13, 2010 10:58:35 PM Quote
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Welcome back from your holidays sounds divine
aw no so sorry see ra out of remission i can say cleaning and ra dont agree often for me sure alot others same.
ouchy your back good to see it has calmed down.
wishing you well that slight up of emds will be enough for you.

for me i had quite some years of remission followed by a slow creeping out of remission good your still under a rheumatolgist that was my downfall being discharged took many years to get re referred by which time took 2 years to gain slightest control.

so im so pleased see you were left on a dosage of meds and not completley stopped.

should be quicker to work again.
lv hugs

melly
cuddly cats make my world seem so much more fun
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heather1
#4 Posted : Monday, June 14, 2010 8:38:21 AM Quote
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Location: hampshire
Hi Fiona, so sorry to hear your RA is back. Take good care and I really hope you get some relief soon,

lots of love
Heather
ps your holiday sounds fab!
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m_nanasbaum
#5 Posted : Monday, June 14, 2010 12:56:45 PM Quote
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Sorry, Fiona the RA has reared its ugly head again. I am in the same situation, had several years managing my life quite well, but lately I am in a lot of pain. Everything seems a struggle. First thing in the morning I feel absolutely rubbish after having spent a restless night twisting and turning to find a position, where the pain in my right knee will ease. There is also the terrible tiredness and lack of energy. I get so fed up with myself, because I feel my days get wasted, when I can`t do much.
I am so glad to hear, you had a lovely break. Going by boat can be so much more relaxing, than the ghastly airports, which even for healthy people often are nightmarish these days.
I am also on Plaquenil, 2 tablets a day. I did try to go down on my steroids from 4 to 3 mg, but I have had to
go back up. What fun it all is.

Merete
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Rose-B
#6 Posted : Monday, June 14, 2010 2:50:04 PM Quote
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Location: Somerset

Sorry Fiona that the dreaded RA has returned for you, yes I agree soo depressing after being
symptom free for 7 months, and then reducing your tablets all the symptoms return.

Sorry to hear that . I do hope relieve comes soon. I am waiting for leflum to start acting on
me as been off work 3 months now, with extreme stiffness, slight depression, upset with the
naproxen. and had to come off mtx last nov. so I am desperate to get sorted as well.

Good luck

Rose
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jeanb
#7 Posted : Monday, June 14, 2010 4:30:37 PM Quote
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Oh Fiona -so sorry the RA has returned. What a bum disease this is.

Much love
Jeanxxxxx
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bethbrown
#8 Posted : Tuesday, June 15, 2010 4:03:17 PM Quote
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Hi Fiona
Reducing meds
I have just had an anti-tnf appointment with the nurses at the hospital.
I was put on infliximab last August having failed (sounds so depressing - as if I've not tried hard enough!) on mtx, prednisolone and leflunomide.
Last June- having reduced the prednisolone to see how I was - I was suffering quite badly and scored enough on the DAS score to qualify for anti-tnf. I have been so well since starting the infliximab - that I was keen to stop leflunomide (which I believe has increased my BP - needing me to take MORE pills to control that) although I am not without little episodes of swollen joints and pain.

The nurses recommended that it was NOT a good idea to stop leflunomide or even reduce it, as they say - if it makes my RA flare they can't guarantee it will be as effective if I try to return to the dose I'm on at present. And I was so hard to get under control to start with!
So - I am still on the cocktail of mtx, lefl + anti inflamatory plus the statin and BP tablets and the anti-tnf BUT at least I can dress my self now, dry my self after a shower, clean my teeth effectively etc none of which I was able to do easily last June.

I sympathise with you and hope you can get it sorted soon and return to as near to ‘symptom free’ health as possible.

Love Beth
Anyone else had similar experiences trying to reduce meds?
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lizziemouse
#9 Posted : Tuesday, June 15, 2010 4:54:01 PM Quote
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....Until last year my life was all about reducing meds with the never waning hope that I could then just quietly fizzle them out while no one was looking.....
- After about twelve years I have finally realised I can't manage without the meds - the dratted RA ALWAYS comes back :(

...but somehow or other over the last year I have accepted this, I know I am very lucky to be really quite well the majority of the time,
and I have now stopped seeing my tablets as the "enemy",
I know and accept now that i need them - without them I would be so much worse,

I finally realised how much I needed my tablets after having to give them up for a week last winter after exposure to swine flu, I actually MISSED them and was really pleased to start taking them again!

It is a bit of a mystery as to why some meds work for some and some don't, I really hope you all can find something that works well for you,

Take care & look after yourselves ~ love from Liz xxxxx
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lyn2
#10 Posted : Tuesday, June 15, 2010 8:01:23 PM Quote
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I'm trying to reduce steroids, and have got down to 2mg, then 3mg, then 3mg, then back to 2 mg. I've been able to cut down from 5mg to 3mg in about a year, along process.

Now I'm going to try and cut down my amitriptyline. I won't stop taking it altogether, but will try one tablet one night, then 2 the next and so on. The only thing is if my subconscious knows I'm only taking one and then it won't work. I could do with having a placebo! I'm not sure if I can do it though, as if I have a lot of pain I have to increase the amitriptyline.

Time will tell!

Lyn
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MrsWoman
#11 Posted : Wednesday, June 23, 2010 9:03:47 AM Quote
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Sorry Fiona that its come back I suppose the meds were working well. Perhaps you will go back after being back on the original dose for some months.

Hi Lyn I am on steriods too and need to go down. I just hate having to cut the tablets up which has put me off. The doc only said for me to go down to 2.5 - and inferred that 2.5 is better than 5. I wonder does that mean I can never go down to 0 steriods?

I read the headlines that there was a vaccine for those with asthema and hayfever in 4 years. I hope that this breakthrough helps with RA research. Though I know its a different immune system.



Mari
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