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john_t
#1 Posted : Monday, December 13, 2010 11:39:06 PM Quote
Rank: Newbie


Groups: Registered

Joined: 12/16/2009
Posts: 3
Location: Chester
Hi All,
Some of you may remember me from the previous forum. I wasn't the most prolific 'poster' but did do a lot of lurking.

To introduce myself again, I was first diaognosed in 1996 which was when my wife was first diagnosed with breast cancer. I didn't have any treatment at first because by the time I saw the Rheumatologist, the symptoms had gone away. My wife died in 1998 and the RA came back with a vengence. I know this could be a coincidence but I personally believe the stress etc had everything to do with triggering it.

I was first prescribed sulphasalazine, then gold, and finally MTX which took me through to March 2009. I also took anti inflamatory drugs including Vioxx (4 yrs)

I was in the Police when my wife died and I was able to retire early. My son was nine at the time so it was good to be able to look after him properly. The RA took its toll on my hands but more so my feet hence the surgery.They were particularly painful under the metatarsals.

I had a foot operation back in Aug' 2007 which didn't quite go as I would have liked. My foot became infected and one of my toes went black. The procedure I had done was the shaving of the bone on the big toe (bunion) to straighten it and all my toes straightened with pins.

I have since found that the shaving of the bone is not recommended for people with RA. Some of the infection may have been introduced by the pins because my toe had a bone infection that was difficult to treat.

To cut a long story short, the surgery wasn't successful and in time it looked worse than before the op. I was referred again in January '10, but to a different surgeon. He advised the the'fowler procedure' was the way forward but he wouldn't carry out any surgery whilst there was infection in my toe which he amputated in March '10. I have to admit, I was glad to see the back of it with all the trouble I'd had with the infection. Just couldn't get rid of it and apparently a bone infection is quite serious.

I had the second foot op in June '10 and I am very pleased with the result. The 'fowler procedure' involves removal of the toe joints which are then fused. I also had a metal plate along the big toe which is now straight and painless. I was in the 'boot' for about six weeks but it's been worth it. I am now due to go in on the 11th Jan 2011 (prov) for a similar procedure on my right foot.

Since 2009, I have had Depo Medrone (steroid) injections when I could but because of the surgery and the risk of infection I couldn't have them for awhile and suffered a lot. My Rheumatologist had put me forward for Rituximab which I started in September '10. Both infusions went well and the only side effect I had was a stomach problem which I'll not dwell on! I'm now back to normal and the RA is a lot better. I'm actually starting to feel enthusiastic about doing stuff! I haven't had that feeling for a long time. I do have my fingers crossed though (well I would if I could :-)

I've also developed a heart murmur which is being monitored.

Hope I haven't gone on too long but I thought it may help someone with a similar problem.

Best Wishes. John.
Lorna-A
#2 Posted : Tuesday, December 14, 2010 12:52:07 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 3/8/2010
Posts: 914

Hi John,

I am Lorna, I was diagnosed in 2007, I had had a flu jag which I swear triggered mine. I was very ill to begin with, but having been on the triple therapy I feel so much better. I am so sorry to hear of your loss, things must have been really hard for you in the beginning with the loss of your wife, and a little boy to look after. Your son must be around 21 now, you certainly have had a hard time of things. Like you I think it sounds very likely it was the stress which triggered your RA, one can only begin to imagine the trauma of your wife then you been diagnosed at the same time.

It's really good that you feel better and able to do things, I find this time of year depressing with the long winter nights. Have you had snow in your part of the country, we still have lots although the roads are cleared now, the main ones anyway. We are due for more this week, I hope not too much as my daughter is flying home from Norway this week.

I hope you have a lovely Christmas and a peaceful and painless New Year.

Take care Lorna Smile

Egg Lady
#3 Posted : Tuesday, December 14, 2010 1:57:02 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 10/21/2010
Posts: 69
Location: North Devon
Hi John

Welcome (back). I was formally diagnosed with RA in October this year, 5 days after I came back from the holiday of a lifetime, a lovely cruise around the canaries! So there was quite a mix of emotions. I felt so relaxed and well after my break in the sunshine, only to be told what I had been feeling was the case, I had RA. There was an element of relief almost because I have suffered on and off with very painful joints, albeit very few and far between episodes for some 10 years. Although I did have a "slightly" positive RA blood result in 1990 following a carpel tunnel operation on both hands, nothing appeared to develop and the rheumatologist deduced I had either a virus (famous for when they don't know what you've got) or spasmodic arthritis?

My biggest problem over the last 10 years or so has been trying to convince people, both the GPs that the pains I had in my joints are so excruciating that I felt sure it just wasn't a case of pulled muscle or strained tendon. I would have 3 or 4 days when the joint would swell and I couldn't work or do anything, and I was given pain killers and told to use ice packs. I lost sleep and just ended up feeling like a hypochondriac! My one doctor even suggested the swelling on my knuckles was from and insect bite!

I believe it was carpel tunnel operation which started it off. Having been an audio typist for many years the RSI in my wrists was almost inevitable.

I have been on Diclofenac and do-dydramol for the last 2 years because the consultant rheumatologist I saw then said I had classic Osteoarthritis, told me to lose 5 stone and wean myself off the pills, very helpful chappie.

You certainly seem to have been through the wringer a bit! It's good you have returned to the forum, I have found the friendly advice and good wishes from everyone a big big help .Blushing

It's always good to read other peoples stores and share thoughts and feelings. Keep posted

Julie (Egg Lady) Because I look after 6500 free range eggs and couldn't think of a more appropriate "handle"
Good advice is best followed by the art of listening

dorat
#4 Posted : Tuesday, December 14, 2010 3:23:35 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 3,157
Location: Huddersfield
hi John,

Welcome back!
Hope you are going to stay with us now.
It's so good to hear that you are doing well on Rituximab.
Good luck for the foot surgery after Christmas, I hope it goes well.

Love, Doreen xx
suzanne_p
#5 Posted : Tuesday, December 14, 2010 3:39:18 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 8/25/2010
Posts: 1,289
Location: Buckinghamshire
hi John,

welcome back and what a lot you have been through.

it seems stress can bring on this dreadful condition ... i first had Osteo in my knee's four years ago and then in Spring of this year i started having pain in my shoulders, arms and wrists.

fortunately my GP picked this up early and referred me pronto. i have been on Methotrexate since June but unfortunately it hasn't worked well enough so have just added Hydroxy last week.

yes the Depo injections really do help i had one a fortnight ago on my last visit to the Hospital.

i'm pleased to hear that you are doing so much better now with the RA, and feeling enthusiastic again as i know RA can knock you sideways.

keep posting and let us know how you are doing,

Suzanne x
Julia17
#6 Posted : Tuesday, December 14, 2010 5:42:01 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 2/18/2010
Posts: 1,098
Location: farningham kent
Hi John

Welcome back to the forum, good to know that the rituximab treatment is going well for you and you re getting you re back on track.

Hope all goes well in the new year, keep us posted.

Take care, Julia
AnnieB
#7 Posted : Tuesday, December 14, 2010 8:13:51 PM Quote
Rank: Advanced Member

Groups: Registered

Joined: 5/19/2010
Posts: 384
Hi John,

My names Anne and I joined the site in May this year so welcome back.

Don't apologise for going on too long thats what this site is for and I found your post informative.

Glad that things are now on the up after the difficult time you have had.

Keep posting

Anne x
jeanb
#8 Posted : Wednesday, December 15, 2010 3:12:44 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 3,006
Location: Timperley
Hi John

Great to see you posting again - welcome back!

Sorry things are not good RA wise but wishing you every success on Rituximab. Let us know how it all goes.

Love
Jeanxxxx
Kathleen_C
#9 Posted : Wednesday, December 15, 2010 5:02:28 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 12/3/2009
Posts: 1,689
Location: Durham
Hi John, and welcome back!

Hope the rituximab works some magic for you and you feel better.

Kathleen x

Rose-B
#10 Posted : Wednesday, December 15, 2010 9:59:32 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 4/20/2010
Posts: 1,749
Location: Somerset


Welcome John

Good to hear from you and keep posting. You have been through a lot of troubled
times, but glad things are improving and the new drug working for you well
fingers crossed that continues.

Good luck with your op in Jan.

Keep in touch Rose
Angiecha
#11 Posted : Thursday, December 16, 2010 3:42:10 PM Quote
Rank: Advanced Member


Groups: Registered

Joined: 9/5/2010
Posts: 185
Location: Lowestoft, Suffolk
Hi John

Good to read your post and I hope you are getting along ok. Horrible to hear that the surgeons got it wrong with your foot originally. Hopefully you will be able to stick with the Fowler technique chappie now.

Was wondering whether you felt you were now bionic? Do you set off the alarms at airports and such or have you not tried that yet?

Think you are so brave going through all the tests, drugs surgery etc. I'm in the lucky position of being in 'remission' and controlled (well, sort of) at the moment.

I hope in your new positive state of mind you will keep us all up to date with any escapades!

Look forward to 'hearing' from you again.

Angie x
Be yourself - everyone else is taken. XX
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