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Newly Diagnosed..saying Hello to all. Male Aged 45..life hi-jacked!! Options
petti1
#41 Posted : Tuesday, May 10, 2011 8:04:24 PM Quote
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Joined: 4/16/2011
Posts: 36
Location: Northumberland
Hi Darshin,

I am new too, diagnosed 1 month ago, so far had 2 joint inj and waiting to start mtx on 6 june. No rheumatology nurse appt materialised so far despite supposigly having 1 sent within 2 weeks of seeing consultant (April11) I do have a fab GP though who is trying his level best to sort out my pain. Its funny really, I have gone from a sore wrist, to every part of me having pain in some way in just a month. The pain in my wrist (right, and I am right handed) is agonising. I know exactly how you feel though. It is a lot to take in, especially when you appear to have a new pain daily!!

I have found lots of support and encouragement on this site so far and I have only posted once, everyone here understands what us 'newbies' are going through in these early days so it is great to know we are 'normal' in terms of the disease process, I honestly thought I must imaging all the new symptoms at first.

Welcome to the site, I look forward to learning more about you. I am 48, married 3 grown up kids and 1 grandson, 2 further babies on the way in june and july so need to be out of pain to cuddle the new grandkids!! Love
dlakhia
#42 Posted : Tuesday, May 10, 2011 9:43:49 PM Quote
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Posts: 79
Hello again..2 questions

1) If MTX was stopped for anyone what was the reason - too many white blood cells?

2) If you had steroid injection intra muscular i.e in the arm/bottom for example how long did the effect last? My first one lasted 2.5 weeks before flare up?
sheila_G
#43 Posted : Tuesday, May 10, 2011 9:57:52 PM Quote
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Joined: 3/28/2011
Posts: 956
Location: North Preston
Hi Darshin

My mxt was stopped twice. 1) because liver function test was high and 2) because I had a breathing problem and mxt can cause fibrosis. After the first one I was only off for one week could go back on after next test was ok. The second one was more problematic. I had to have a CT scan, chest x ray and by the time I got results from both mxt had worn off and I had the worst flare up ever. Fortunately breathing problem was not caused by mxt so was able to continue on it.

Sheila x
LynW
#44 Posted : Thursday, May 12, 2011 4:06:35 PM Quote
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Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
Hi Darshin

Better late than never I guess! Welcome to the forum. A great place to be for support and information; lots of folk, lots of knowledge and a wealth of tried and tested experiences! Glad you have found us and NRAS!

I'm Lyn, married to Mike, we have four children (well I call them children but perhaps it's time to stop!), Abby 23, Ian and Jake 17, and Louis 16. All four in various stages of education! We live in Thornton Cleveleys in north west Lancashire. I was diagnosed with RA nearly 23 years ago and have since run the gamut of medication and had lots of surgical procedures along the way. Currently on Enbrel, Leflunomide, Prednisolone and Naproxen, and a wagon load of pain killers! Struggling at the moment after knee surgery last summer, a major flare in Cyprus of all places, two lots of knee aspirations and joint injections in 7 weeks, a depo injection that didn't work and basically RA that has not been controlled for the last 12 months! But heyho... no-one said life with RA would be easy and all the lovely friends I have made make it very worthwhile (mostly!)

In response to your questions

1. After 10 years on methotrexate I developed neutropenia (a shortage of neutrophils) leaving me open to recurring infections which went on for months. I did the 'stop start' trick with the methotrexate but each time I re-started the neutrophils dropped again. Now off the drug but pushing to go back on it as it is one of the most effective drugs I have ever had. Keeping my fingers crossed to be allowed on a low dose as a test. Methotrexate can be a cause of leucocytosis - too many white cells. These same symptoms can also reflect a high level of inflammation. It depends what the other blood markers show such as high CRP/ESR etc.

2. I was told recently that intramuscular steroid injections (ie depomedrome) should last anything from 6 weeks upwards. I have only ever had one, a max. dose one, and it didn't work at all! Perhaps you needed a larger dose, some do!

You are on a good combination of meds so hope you get some relief soon.

Looking forward to getting to know you,

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

JulieM
#45 Posted : Thursday, May 12, 2011 6:45:10 PM Quote
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Location: W. Yorkshire
My mtx was stopped when I had an abnormal liver reading (they subtly asked me if i had been partying!) but that was just a blip and I was soon back on it.

My depo injections can last for about a fortnight and sometimes i don't feel any effect at all! There is no rhyme or reason with this RA!
YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
Lorna-A
#46 Posted : Friday, May 13, 2011 5:32:24 PM Quote
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Hi Darshin,
I had 3x Depo injections roughly 2 weeks apart. They did wonders for me, within a few hours I could move again. I will never forget that feeling, without them I was an invalid needing everything done for me and with there help I was again mobile.

Why don't you keep a diary to chart your progress, I did and looking back you can see how far you have come. I checked mine before coming on here and each week made a difference to me.

Hope you are well.

Lorna Smile
dlakhia
#47 Posted : Saturday, June 18, 2011 10:37:37 PM Quote
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Hello again..Quick update after seeing my (private) consultant this Friday after reviewing latest blood tests.

My ESR and CRP were high and gone up against the previous blood test. I was probably under influence of the 3rd depo-med injection on the older blood test.

The consultant has advised me to start on a 3rd DMARD drug sulfasalazine..which I took today. 2 x daily to start.

So now 3 DMARDS to get on with..

Also had an aspiration on my right knee - a tea cup worth's yellow/orange fluid removed and also a steroid injected into knee. Lot better now.

In fact today is the best I have felt in days. Even hands and fingers were great on wake up.

Wonder if the injection in knee can act across the body?

I also have my first NHS appointment here in Watford and am hoping that they will take over my case going forward.

Living in hope that surely 3 DMARDS must get me control of this horrible illness!.

Hope I haven't bored with this essay..

-Darshin
-- MTX, HCO and new Sulfasz
sheila_G
#48 Posted : Saturday, June 18, 2011 10:51:54 PM Quote
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Posts: 956
Location: North Preston
Hi Darshin

I think an inj into a single joint can spread across the body. I had an inj in my shoulder 2 weeks ago and I haven't had any problems anywhere since. Hoping it lasts a while longer. Good luck with yours

Sheila x
dorat
#49 Posted : Sunday, June 19, 2011 11:10:20 AM Quote
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Posts: 3,157
Location: Huddersfield
Hi Darshin,

Lovely to hear that you are feeling a bit better.
Yes, a steroid injection into the joint will get into the system , I have noticed this with joint injections.
Good luck with the sulphasalazine, I hope the combination of 3 DMARDs does the trick for you.

Doreen xx
jenni_b
#50 Posted : Sunday, June 19, 2011 1:41:30 PM Quote
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Location: nr Southampton
hi darshin.

pleased things are looking up. 3 dmards together is known as triple therapy.
its ever so good in research- as effective as anti-tnf according to some research.
also, the steroids help a great deal in the short term.
one stab goes a long way even if it is in the knee... some get absorbed into the body as a whole.
does it feel better with the fluid off?
i always used to get lots off and it felt tonnes better.
now, it doesnt want to come out!

keep posting

Jenni x
how to be a velvet bulldoser
suzanne_p
#51 Posted : Monday, June 20, 2011 11:56:11 AM Quote
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Joined: 8/25/2010
Posts: 1,289
Location: Buckinghamshire
hi Darshin,

pleased to hear you are feeling a bit better,

and good luck with the triple therapy .. you were able to start it early in England, as my 2 DMARDS were given 6 months apart although sadly failed.

still waiting to hear on the Humira.

Suzanne x
dlakhia
#52 Posted : Monday, June 20, 2011 8:55:27 PM Quote
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Thanks for your replies all. So it seems that a jab in the knee can spread to the body. Well it must be as my hands were great the next day and are good today.

First time knee drain/aspiration has helped quite a bit.

My private consultant was initially only interested in a slow start to DMARDs with MTX. But then on next visit he said that he went to some conference where he discovered the latest approach is "combination therapy" and so started me on HCO. I found this a little funny as I had already read that "combi therapy" was the NICE recommendations nowadays and wondered why he didn't know this? Then with latest ESR and CRP some 6 weeks after HCO he said I should start SulfaSalazine as well.

Have tolerated the first 2 drugs OK so far. Lets hope sulfasz is OK as well.

He has also encouraged me to go for NHS referral for future takeover of my case and his argument was that in case all 3 "dmard" drugs don't work then it will need an application for biologics like a lot of you are waiting for. The fact that I go to the NHS already on 3 drugs will hopefully get me qualifying earlier.... But that's for another day and hope it doesn't come to that.

Frankly I am relying on these 3 "dmards" to get me right..like Lorna in Scotland..!

I would love to hear from others for whom combi-therapy works/worked

- Darshin

LynW
#53 Posted : Wednesday, June 22, 2011 12:55:03 AM Quote
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Joined: 12/4/2009
Posts: 2,127
Location: Thornton Cleveleys
Hi Darshin

The approach your consultant has used is the one that is recommended ie combination therapy. Majority of practitioners use this method as it has been well researched, tried, tested and recommended.

I have explained this elsewhere but not sure where now! The method of combination therapy used in England is called the 'step up' method. One DMARD is introduced, often Methotrexate as this is sometimes enough on its own to slow the progression of the disease. Something we would all like with the minimum of drug intervention. If symptoms are not brought under control within 3/4 months a further DMARD is added to the mix to make a combination therapy. If necessary a further drug may be added to make a triple therapy. Each stage is initiated gradually so that at all times the efficacy of the regime can be adequately monitored. If side effects occur it is usually clear which drug is the culprit and just that one drug can be removed from the cocktail.

The method used in Scotland, certainly by Lorna's consultant, is the less frequently used 'step down' method. All three DMARDS, usually including methotrexate, are given at the outset. The idea being to hit the disease hard at the start. The snag with this is it can be very toxic on the bodily systems and if side effects occur, commonplace when so many new drugs are all introduced at once, all have to be stopped until things settle down.

In my opinion, and it is just that, it is not necessary to 'over treat' RA. It is a progressive disease, as I well know, but that progress is slow. Joint damage occurs over a long period of uncontrolled disease, years, not overnight or even months. A slowly built up drug regime will be more effective providing it is carefully controlled and monitored.

I have had combination therapy in the past which has worked well until such time as the drugs have lost their efficacy. This seems to be a feature of RA unfortunately and different drugs may need to be tried as a matter of routine. So, there is no cure yet but most people diagnosed and treated early enough will have a very acceptable prognosis with today's modern drugs and will live a fairly normal life with little or no joint damage. Sounds like your consultant has you heading in the right direction, fingers crossed for a good outcome.

Take care

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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