My 2 Year RA Anniversary

It was my 2 year anniversary of being diagnosed this week, not the sort of anniversary you expect cards or chocolates for but I certainly never expected to be here 2 years ago!

I've had a massive flare since early september, I was on 25mg mtx and enbrel but missed two doses as I got an infection on holiday. On the day after we returned from holiday my mother in law died very unexpectedly, she was 62 and it is only 18 months since my father in law also died very suddenly at 60. The following day my gran died. This, the infection and a back injury caused a huge flare. My consultant took me off enbrel at the end of sept as he felt it failed, my RA nurse disagreed. I was switched to humira and immediately had an allergic reaction so I was changed to golimumab and due to start it mid november.

Just before starting the goli I got a rash and spoke to my rheumy nurse who got me in there and then to see the consultant. My CRP was 220 and I was diagnosed with Rheumatoid Vasculitis (RV) which means my immune system had started attacking the lining of my blood vessels. It is very rare and can be quite dangerous and only occurs in very agressive RA. I was put on a really high dose of steroids reducing over 5 weeks.

The goli immediately made me feel worse but I couldn't put my finger on why. As the steroids reduced my RA worsened and as soon as I finished them just before Christmas the RV recurred despite having had my second goli jab so back on the steroids. This time they made me soooo sick over Chritmas that I couldn't keep anything down. I saw the nurse on Jan 4th who got the consultant as I was so poorly, he says I have drug induced lupus, stopped the goli immediately and wanted me on rituximab. As it would take 6-8 weeks to start my nurse got him to agree I could retry enbrel. I had to persevere with the steroids and start enbrel again next week.

On Tuesday the RV got so bad and I was getting nosebleeds, I spoke to the nurse who got me in that day for a steroid jab but when she saw me she said there was no point, it wouldn't help and to come back the next day for an infusion.

I think the steroids are kicking in at last although neither the RV or the horrendous swelling have gone but I can move a bit better today.

Thanks for reading, sorry I've gone on so much, I've been feeling at bit sorry for myself and everyone one on here seems so lovely and supportive from the things I've read.

18 Replies

oldestnewest
  • What a dreadful time you've had - I'm so sorry that you've had such bad luck. You seem to have got an especially nasty form of RA, and and all the different stress you've had can't have helped. So I think you have every right to feel more than a bit sorry for yourself - if it were me I'd be a useless puddle of misery so you must be very strong to be coping as well as you seem to be. And it's so horrid to have to constantly be going backwards and forwards to the clinics, as you never get away from thinking about it.

    Do look after yourself, and try to do some special things to cosset yourself - you deserve it.

    I will hope for you that the infusion has a great effect in calming things down, and you get to go back on enbrel and it gets things back under better control soon. It is remarkable though how quickly things can change with RA, but positively as well as negatively. So maybe good times are just round the corner for you - here's hoping. Polly

  • Oh Mary it sounds as though you are really going through the mill just now. I really feel for you after all your bereavements and I would suspect that would make the symptoms and your disease flare badly.

    Have you thought of using a service called CRUSE, It helped me so much when I very suddenly lost my Dad, as I could talk to someone and not keep talking to friends and other members of the family who were suffering.

    When my consultant wanted to change my therapy they did hand and feet ultrasound which showed the drug hadn't worked as I still had active synovitis, It was a relief in some ways to actually see the signs of inflammation being there or not and helped him decide what other drugs i needed.

    I hope things settle down for you and that the Enbrel works well for you this time, look after yourself and i hope this year is better for you. Axx

  • Oh Mary,i really feel for you my love. I lost both my mum and my dad in 8mths so i know how it feels.It took me 2yrs to get over their deaths and to say it was hard is an understatement.

    You must rest as much as you can until they get you settled down. Down apologise for having a moan,if we don't know we can't help you,and thats what we do support each other through good and bad times. It is a help as each of us has first hand knowledge of the suffering that your going through,some of us more,some of us less. Pain is pain as far as i can see. Some of us can stand it more than others.

    So Mary feel free to moan away. It helps us as wel as it does you.

    Take care sylvi.xx

  • Hi Mary

    So sorry to hear your suffering so badly with your ra..you've already been through so much with all you loses and I can't imagine how low you must be feeling.

    I lost my best friend in July and I flared so badly and I'm still not over it yet but you sound much worse so I totally feel for you.

    Never worry your moaning we are all here to support each other at all times good and bad.

    Take care thinking off you x

    Julie x

  • Hi Mary

    I'm really sorry thet you are so ill at the moment but it sounds like your doctors and nurses are looking after you.I really hope that your steroids work quickly and you start to improve very quickly.Glad you have joined us and hope to see you posting often

    Look after yourself

    Julie x

  • Ditto to what everyone here has said and bags of sympathy for you. i did read somewhere that the longterm prognosis for those with very aggressive RA is actually better than for those for whom it progresses slowly so I really hope this means that yours will be controlled soon by the right drugs - here's crossing fingers (and that ain't easy!) for you that the return to Enbrel works really well. Tilda x

  • Hi,

    I'm really sorry that you're having such a physically and emotionally difficult time:-( You're not 'moaning' you've got every right to be feeling absolutely fed-up, miserable and rotten.

    You have a particularly nasty and aggressive form of RA and some really unpleasant outcomes from drugs - do take good care of yourself and come on here for support as often as you need it, you're not alone.

    Cece x

  • Mary your story is so dreadful it would be very difficult to remain upbeat with even one of those things. I sincerely hope this latest lot of drugs works. All the best.

  • Hello Mary, I was going to start with Oh Mary, but so many others have empathised so well i can't add to that. I was very sad to read what a horrible time you have been having.

    I feel awful that I have been complaining when you have obviously had such a miserable time. I have heard of that vascular RV? before, probably as I work (worked) in Health insurance for years and saw it on claim forms a few times.

    I can only say 2012 is going to be your year, I am sending positivity your way, things are going to get better .

    Hugs to you, Gina.

  • Thanks for your comments, it does help to know that other people are going through similar things.

    I've realised from this site how lucky I am to have such an incredible rheumy team at Carlisle (even though it is an hour and a half from where I live), especially my nurse who has become quite a good friend over the last 2 years as I've seen her so much.

    I expected the steroids to be doing a bit more than they seem to be but I do feel a little bit better that I did.

    I hope you are all ok and enjoying the lovely weather.

  • Dear Mary hope things inprove for you soon

    very best wishes

    Alison x

  • Dear mary, As I read your first blog last week, or maybe earlier this week, I said that was the most horrendous story of the effects of RA I've ever heard. Coupled with all the sources of stress is beyond what one human should have to bear! So, know we are all with you.

    Are you living alone? Do you have family nearby to help you with daily routines? I am alone, and I just can't imagine dealing with all of that! And my friends and family tell me I'm strong, but I don't think I have had so many things all at once!

    All the advice here is supported, try to stay in, stay warm, get horizontal, whatever it takes to be comfortable. But first, make sure you have your meds beside you, with something to drink, also coffee, tea or hot cocoa, a sippy of red wine, and the tv remote! God bless dear heart, LoretXX(((((((o))))))

  • Hi Loret,

    Thanks for your reply. I live with my other half, Mike. We live near my parents and they and our friends have been brilliant but its difficult for anyone without RA to understand that side of things and I feel awful complaining to Mike all the time when he's had so much to deal with losing both parents.

    I'm not usually such a moaner and think I cope with my RA pretty well but this flare and the RV have been a bit draining on top of everything else.

    Mary

  • You earned the right to moan all you need to, and you came to the right place. Hope all settles down this weekend. Love, Loret

  • Please always feel you can moan away here anytime Mary - we may not be suffering as much as you are but we all use HU to moan for the reasons you have specified re family and friends not fully understanding or having enough to deal with. Whereas all of us here have bad days/ weeks/ months and need to offload to stay sane sometimes. Take care and please do whatever you feel need to do to recover from the flare, bereavement and RV. Tilda x

  • Hi Mary, I have been thinking of you, wondered if you started back on the Enbrel, and how are you generally speaking? Sure hope things have settled down to more tranquil days. Do take care! Loret

  • Thanks Loret, I restarted enbrel today. My CRP was higher than before the steroid infusion and the vasculitis has come back again. My rheumy wanted me to have another infusion but I felt there was no point as it didn't help. I also now have a cold and a massive dose of steroids on top of the enbrel would probably completely floor me!

    How are things with you?

    Mary

  • Hi Mary, Glad you started the Enbrel again, now let's hope and pray it makes a difference. Yikes that cold virus must be blowing with the winds over there!

    Things with me are pretty much the same, as far as the arthritis goes, except for both wrists and hands and feet might be flaring a bit, it's time for the Simponi injection tomorrow and then the MTX the next day.

    My Rheumatologist's office nurse called today with an appointment for me to see the Ortho Hand Sugeon, for Feb 10, and I will have to go into Cleveland for that. My spine surgeries were all done in Cleveland, at Metrohealth Medical Center, and this doctor has an office several blocks east of there.

    My daughter-in-law will be driving, so hope it won't be too hard to find.

    I really haven't decided what I will agree to do. But I need to find out what can be done, or what must be done. My right wrist is not too useful, especially in the kitchen, chopping and slicing is really painful.

    So, we'll have a couple weeks before I get an answer. You keep on keeping on, you know the PACE advise, don't you? First rest, drink lots of fluids, and get rid of the cold. LoretXXX

You may also like...