Just when you think things are on the up ...

.. you get knocked back down again! This ruddy disease has such a lot to answer for!

P.S. (Yes I know the PS belongs at the end ... but mine is going at the start!)

For Gallini in particular!

July 25th

Got my Methotrexate back last month, restarted on 7.5mg, and stopped the Leflunomide which didn’t seem to be doing anything anyway. Enbrel was so pleased to see his buddy, Methotrexate, back and I thought to myself jolly dee a few weeks and we’ll be out on the town again , well, slight exaggeration but you get my drift! Naproxen is down to 250mg twice daily and Prednisolone is about 7.5mg a day plus the folic acid, Omeprazole and assorted pain killers. Heyho, Rome wasn’t built in a day, they say.

Went to the Coordinators conference and NRAS birthday lunch returned home pretty weary but no worries that’s life with RA and you have to adapt or you sink. I have at least learned that much in 23 years! Busy time ahead ‘kids’ going here, there and everywhere, jobs need doing on the house, but take it in your stride lass these things are sent to try us. Then out of the blue, Thursday morning dawns and ...

... What is this dreadful pain in my right leg? It’s not particularly warm nor is it swollen but boy does it hurt, like long term cramp. Oh well, life in the fast lane no time to be fiddling about today we have our local NRAS meeting tonight and much to do before then. By lunch time I take myself off to bed, can’t stand it any longer. Leccy blanket on full and pain relief maxed out. This really isn’t me!! Two hours later out of bed must plod on so best leg forward, at least I can see rheumatology nurse at meeting. Meeting brings light relief and I try to forget about leg, so much easier when my mind is otherwise occupied; I’ve never been able to multi task!

Nurse has a look at bad leg and wants me seen by vascular nurse to rule out DVT. Oh heck! Two hours in GP surgery on Friday (vascular nurse can’t see me ‘til Monday!). Three Tinzaparin (anticoagulant) injections over the weekend. A badly bruised stomach to boot, goodness knows where I’ll put the Enbrel tomorrow! Two hours in DVT clinic today including three tubes of blood letting and a vascular ultrasound. No sign of any DVT!

Seems I now have a ruptured popliteal cyst (Bakers cyst), groan! Have to phone the rheum nurse on Wednesday when she’s had chance to speak to consultant. Seems like the Synovial sac in the knee has finally given up the ghost and spread its contents all down my leg. Nice! Already have problems with this knee (well both actually!) and now it seems likely it will need surgery to repair rupture. It’s not going to need aspirating as the mush is now everywhere it shouldn’t be south of my knee!! Bother, surgery means stopping meds ... groan, groan and thrice groan. This is where the problems started twelve months ago! More groans

Doesn’t life just belly up? Wasn’t planning on a hospital stay just now. For goodness sake, if I didn’t laugh I’d be sat in buckets full of tears. Life is so exciting being an RA patient just not a very patient one in my case!

29 July

Things went well at the hospital and today there is some improvement thankfully, whoopee! Whilst I am up early today, as I say I did manage some decent sleep so that's pretty good considering the additional steroid floating about my system! Thought it wise to get up and get on at 5.30am instead of laying there thinking about the day ahead. I can always sleep again later!

Both knees were aspirated and depo-medrone injected so feeling much less swollen. Took a 'water' tablet to help release the build up of fluid in my right leg and that seems to have helped. The consultant is hoping that, now the fluid has gone, the steroid will repair the rupture in the synovium and surgery can be avoided. Positivity is the order of the day Once things are settled I could do to cut down the Naproxen and Prednisolone and try and get back to where I was in December 2009 before things started to go so wrong!

Lyn

[LavendarLady]

Hi Lynn, I also had a Baker Cyst burst behind my left knee when we were in the USA 3 1/2 years ago. Had great treatment at San Diego Hospital (Scripps Mercy) who were so kind. Thought at first it was DVT as leg very swollen and painful, pulse up, heart galloping, particularly as had done a 10 1/2 flight only a couple of days earlier! Hotel paramedic referred me to the hospital immediately. Hospital did an ultra sound scan and showed me the blood passing up and down the leg in flashing colours. Very pretty. Also confirmed it was a cyst not DVT. Apparently, the Baker cyst is an early sympton of RA. Anyway, because the cyst had burst, I had to keep the leg up as much as possible to help it drain. The hospital mentioned in the discharge notes, it could be RA and to see my own GP when we got back to UK. Of course, it did turn out to be the start of RA coupled with the plantar fasciitis I had in both feet for some weeks beforehand. I still do get an aching leg from time to time which settles down after a few hours. The cyst did fill up again a few weeks later but then went down of its own accord.

You could put the Enbrel into your other thigh rather than your poor bruised tummy (or your bad leg).

I forgot to take the Enbrel yesterday as working and very busy so will have to take it today. MTX seems to be coping on its own for the moment.

Hope you will soon feel on top of the world again (not) but much better anyway. Love LavendarLady xx

[Hidden in reply to LavendarLady]

Thank you for your good wishes, I don't let things get me down so it's business as normal for me!

It's strange that they should suggest it can be an early symptom of RA, not heard that one before! They all have their own ideas don't they? The rheumatologist decided my problem is probably more likely a ruptured synovium rather than a popliteal (Baker's) cyst. I was advised by my rheumatologist that it is common in people with long term disease where the synovium has become steadily weakened by frequent fluid build up and tears under pressure.

Do you inject Enbrel into your thigh? Eek ... that's painful. Mine goes into my stomach, always! Missing one day shouldn't affect things, so no need to worry on that score

[LavendarLady in reply to Hidden]

Hi Lynn, No I usually inject into my stomach swapping sides each week. Did once try the thigh - boy is that painful - I sat on the loo cringing! But then I am a coward anyway! I have missed the odd day with Enbrel when I have forgotten to take it and have taken it the next day. Doesn't seem to make any difference. Hope you are now feeling better (Saturday today). Love LavendarLady x

[Hidden]

Hi Lyn

Eeeh lass you don't do things by half do you. Glad to see you are up beat about it and that you do not allow this goddam disease put you off track for long!

It is so inspiring to read about how busy you keep yourself and cope with things despite the fact that RA is constantly trying to knock you back!

Hope you feel back to "normal" soon, Take Care

Julie xxx.

[Hidden in reply to Hidden]

Thanks Julie Oh you know me, I like to get a proper 'job' out of things. RA is back in the goods wagon where it belongs whilst I soak up first class living. Keeps rebelling though ... you know how it is!

I can't do multitasking so RA just has to keep itself occupied

[Tiasteph]

Hi Lyn,

I had this happen, was also given the blood thinning drugs as it was a Saturday morning & nobody about to scan until the monday! Very painful, as you say just like cramp! All the tests do mimic a dvt.

I had pleurisy another time & that was a suspected PE, again some problem with a broken scanner meant a stay in hospital & more blood thinning drugs…hey ho better safe than sorry I guess!

Anyway, I feel your pain or should that be have felt…?!

Wishing you a speedy recovery, so you can get on with your busy summer plans xxx

[Hidden in reply to Tiasteph]

I must say I don't much rate the blood thinning drugs although I'm sure they are very highly regarded! made a right ole mess of my stomach. The bruises and inflammation have only just gone!

Speedy recovery happened just fine Steph thanks. Leg much improved although both knees are very misshapen and I suspect that's not going to improve. I just won't bother entering Miss World this time; knobbly knees on the seafront at Blackpool .. now I might stand a chance!

[Tiasteph in reply to Hidden]

Glad your feeling better Lyn

My old knees have seen better days too, bet I'd beat you in that Blackpool knee contest ha, ha. xx

[Tricia-P]

Lyn

So sorry to hear this you were so happy when I first met you, but then all this happens and of you go, I'm struggling with synovial getting into spine L5/4/3/S1 can't op as too dangerous to do so, not ready to talk about it much, but you know and I know that all our fellow RA suffererers (is that too many ers) are beside us and understand. Keep your chin up along with your leg.

love Tricia Pxxx

[Hidden in reply to Tricia-P]

Hi Tricia, just to say I'm thinking of you and what your going through. Take care and be strong luv!!

mand xx

[Hidden in reply to Tricia-P]

Tricia, I've been thinking about you and wondering how you're doing - I'm sorry that things are so tough right now

Take good care of yourself,

Cece x

[Hidden in reply to Tricia-P]

Thanks Tricia, I'm much better now two weeks down the line! Back to my cheery happy little self. Over the years one thing I've learned is that you don't let it get you down otherwise you come unstuck. the blighter tends to linger once it gets hold!

So sorry to hear your news Tricia. How on earth has it reached this stage? Kept expecting to hear you were en route for op. Understand how difficult it must be for you right now. Thinking of you, pecker up

Lyn xx

[Hidden]

Hiya Lyn, well well we certainly don't do things by half do we! Why is the damn disease so stubborn all the time, just when we feel nothing else can go wrong it always seems to.

I really hope you start to feel better soon,all things considered I'll know you'll still be positive it's the only way to cope.Like you say if you didn't laugh about it you wouldn't stop crying once you got started.But we have never been ones to give in, that's the one thing about having this disease so long, is does make you stronger!

Hope all is well at home for you, exam results time soon!

Take care for now.

mand xx

[Hidden in reply to Hidden]

Much better thank you muchly Yes, you're right about positivity it's the only way forward ... until we get slapped in the face with a wet fish yet again!

One son has had his results (he did Level 3 BTECs rather than A levels) and has had his place confirmed at Lincoln Uni. Next twin is next Thursday for A level results and then youngest, like yours the week after for GCSE results. Far too much to think about!

Thanks Mand

[Gina_K]

Hi Lyn,

Hope you feel better soon.

xxx Gina.

[Hidden in reply to Gina_K]

Thanks Gina much better now bop it on the nose and on we go!

[Hidden]

Hi Lyn,

Taking it on the chin as always!

Sorry that you're having such an unpleasant time and hope that you manage to get some drug-regime equilibrium back soon.

Cece x

[Hidden in reply to Hidden]

Oh yes the drugs! What a pain they are. GP says I want you off the anti-inflamms, Rheumie wants me off the steroids ...aaargh there's just no pleasing some people. Talk about a balancing act!!

Thanks Cece

[Hidden]

such a shame as when I met you fleeting at the nras lunch.. you seemed quite well but tired!. so sorry to hear of your problems..

wishing you well

[Hidden]

Thanks for your good wishes Alison. I only posted the blog for Gallini's benefit and all you lovely people have left nice thoughts

I was quite well then but yes very tired. I don't adapt easily to different situations! I'm okay in my own surroundings but when you have to think about using other people's cutlery, moving chairs away from tables, opening other people's car doors, sleeping in hotel beds operating showers etc.

I'm back to being a happy bunny again

[englishmama0]

So sorry to hear that you are going thru such a bad patch. Just when you think things are grand, then something creeps up. And I know what they say about anti inflams, but when you need them, you need them. I've had a bad patch myself, and now my shoulder if giving me gip. Just know people are thinking of you, fighting the same fight you are, and hope all goes better. One Day At A Time. ........... Pam