Still Hoping For a Miracle

littlenell62
littlenell62 Member Posts: 5
edited 7. Apr 2013, 06:06 in Living with Arthritis archive
Hello Everyone

I'm new to the forum, just joined tonight.

I turned 50 last year. I developed a shingles-type rash on my arm and within 2 weeks, my lower legs swelled to about twice their normal size. Whilst my legs were not painful as such, my mobility was much reduced because of the stiffness caused by the swelling. Within a very short space of time, my hands, wrists, shoulders and collare bones became very painful, so much so that I wasn't sleeping. I was having to take more and more pain relief just to grab a few hours of sleep. My GP didn't have a clue what the problem was. Eventually, I was referred to rheumatology and given a steroid injection which calmed things down almost to normal.

I had another episode mid Sept and am just going through another one now. I was given Methotrexate but that made me lose my hair so I have just tried Sulfasalazine which has given me chronic tummy upset so I've stopped taking it and will need to speak to the rheumy nurse tomorrow.

I have tested negative for RA but obviously have some type of inflamatory arthritis. I am not sure at this stage whether it was the rash or the menopause that has made this complaint flare up. Neither am I sure if this is some type of temporary complaint or something that I will have to live with permanently.

Has anyone out there experienced what I have? Did you get better?

Each episode seems to be a little less extreme that the one before.

Any information, help or guidance would be gratefully received.

Thanks so much

Comments

  • stickywicket
    stickywicket Member Posts: 27,764
    edited 30. Nov -1, 00:00
    Hello Littlenell62. It’s good to meet you but I’m sorry you’ve had such a tough time of it. We’re not docs, unfortunately, and can’t attempt diagnoses and, as for whether it’s temporary or permanent – I guess that’s one for your rheumatologist.

    There are quite a few people on here who are sero-negative but still have a form of inflammatory arthritis. In terms of treatment it doesn’t matter much as you get the same meds. Steroids, in one form or another, are often used to treat it until the meds kick in. It sounds as if you had a bad time with methotrexate. I’ve been on it for years and only lose a few hairs here and there. Sulphasalazine can cause upset stomachs but I don’t think you should just take yourself off any of these meds without consulting your rheumatologist or at least their helpline.

    I don’t think any of us knows what causes our arthritis. I know there is a form called Reactive Arthritis which is just that – it develops as a reaction to some other virus or something and, if you get lucky, goes away again. Those of us with RA or PsA (I presume they didn’t think your rash was psoriasis?) though tend to have it permanently. You might find some of Arthritis Care’s booklets helpful, especially the one on Types of Arthritis. http://www.arthritiscare.org.uk/PublicationsandResources/Listedbysubject
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • elnafinn
    elnafinn Member Posts: 7,412
    edited 30. Nov -1, 00:00
    ReActive Arthritis also crossed my mind, but as Sticky says, we are not medics so cannot and would not dream of trying to diagnose a forum member's symptoms.

    I remember well that (Rainbow77) Fayann was diagnosed with ReActive Arthritis and had flare ups every so often. I have a feeling in the end she got herself well-ish but it took a goodly time. She is not on the forum now so hopefully she is feeling fairly good now.

    If you use the Search button at the top of the page, and type in her user name or ReActive Arthritis you should be able to glean some information from her and other forum members on this.

    Elna x
    The happiest people don't have the best of everything. They just make the best of everything.

    If you can lay down at night knowing in your heart that you made someone's day just a little bit better, you know you had a good day.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, you are having a tough time aren't you? As the others have said we cannot diagnose and sometimes even the rheumatologists can't until other bits of the puzzle fall into place. There are many sorts of auto-immune inflammatory arthritis, to a certain extent labels don't matter because the meds are the same but tolerating them can be a challenge.

    I'm on injected meth, sulphasalazine and some other stuff too. These are causing their own troubles but without them I'd be in a far worse pickle. I'm 54, reliant on crutches or a rollator for getting around, have 39 affected joiints with two sorts of arthritis but yes, I reckon things could be worse! :lol: One sort is psoriatic arthritis (which comes with skin trouble and is a sero-negative form) and the other osteo arthritis.

    I had five years without treatment because my then GP didn't recognise my initial symptoms of an inflammatory arthritis - you are in a better place as your GP has referrred you to the right people. I understand that miracles can happen and in my experience they happen to other people - hopefully you will be one of them. Keep in touch to let us know how you are getting on and I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • barbara12
    barbara12 Member Posts: 21,281
    edited 30. Nov -1, 00:00
    Hello littlenell and welcome to the forum
    The others have pointed you in the right direction, the one things this forum has taught me is how complex arthritis is, I am still having regular blood test after nearly 4 years of arthritis...at the min it is OA...but yet I can go back to before my teens having what they said then was fibrositis...sorry spelling...I do hope you get some answers very soon x
    Love
    Barbara
  • littlenell62
    littlenell62 Member Posts: 5
    edited 30. Nov -1, 00:00
    Many thanks for your replies.

    I spoke to the nurse today and she wants me to persevere with the Sulfasalazine. It's just so difficult with working full-time and fairly long hours. Also, I'm in and out of meetings most of the day and can't just dash out easily.

    I'm going to give it another go and see if the symptoms settle down.

    I'll keep you all posted.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    What dose of sulph are you taking? I take six per day, three in the morning, three in the evening and I take both doses after food. When I began in Feb 2002 I had dreadful bruising over my lower limbs, others experience nausea and / or the upset tummy. I hope you can persevere with it and that it soon starts to help matters. Are you also having your bloods done? I remember being on fortnightly blood tests when I began sulph. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • littlenell62
    littlenell62 Member Posts: 5
    edited 30. Nov -1, 00:00
    Each tablet is 500mg. I'm supposed to be increasing the dose weekly until I'm on 2 each morning and another 2 each eveing. I had only taken one and as ill for 2 whole days.

    Yes, have to have bloods done every 2 weeks to srart with.
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    You are indeed in the very early stages, your body may well need time to adjust, some do struggle in the early stages but things can settle. Take the morning tablet with food, then when you progress to morning and evening again make sure that you eat a little something - that may help matters. Another tip is to not expect to feel poorly - the mind is a powerful thing, negative thoughts might influence how you are feeling. Good luck and please let us know how you get on. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • gt43
    gt43 Member Posts: 14
    edited 30. Nov -1, 00:00
    Poor you - you struck a chord with me, as my whatever-it-is (also negative for all the usual blood things they look for) also happened as I turned 50 ... adding insult to injury, eh! So, no answers, but just wanted to add my sympathies, and hope the docs come up with some answers soon.

    Hugs,

    Carole
    XX
  • littlenell62
    littlenell62 Member Posts: 5
    edited 30. Nov -1, 00:00
    Hi Carole

    Apologies for not replying sooner. I have been without internet for last 4 weeks, won't be back on for another 2 weeks, doing this now from my sisters.

    Do you mind me asking how old you are now or how long ago you were diagnosed with IA?

    It is almost a year since I suffered my first flare up and once the year is up it is less likely to be reactive and more likely to me something I might have to live with permanently - not a pleasing thought!

    I just got more and more ill on the sulfa, appmt with consultant in 10 days so will see what he recommends next.

    Helen x