Hi. Newby with ra and mother with ra oa and vasculitis

Hi all hope you dont mind a newby just wondrred if anyone had some advise. I myself am 46 have had ra for approx 10 yrs currently taking hydrocloraquinalin and sulpazelazine. I have a 5 yr old who has been like a little germ magnet and i find a soon as i get up to full dose of she bringd something home that i come down with and have to stop my meds. My rhuemy has suggested methotriate injs and im due to start them next thursday as can get to full dose quicker than building up the dose of the others. Thing is i seem to cope with the pain without taking too much but so tired all the time. I have watched my mothers ra take hold of her over the years and want to stay as active as posdible for my kids. I want to enjoy them not just sleep through their childhood which is my go to coping method. Any advise x

8 Replies

  • Hi sunshine, I started with RA about 14yrs ago ,it started in my hands,I paid private to start with to see a rheumatologist as I couldn't wait because the pain was so bad.He gave me a steroid injection and sent me for a scan,it then was found I had it in all my body from my feet up to my shoulders. He then put me on Sulfasalazine and gave me an phone no to ring if it flared up,which has happened about 4times,he just gives me another steroid injection. The Sulfasalazine seems to pretty well keep it under control thankfully,my hands have twisted slightly,and my knees and feet occasionally are a little painfull but all in all over the last 14yrs the Sulfasalazine does the job.I do have follow up appointments every 6mths and blood tests every 3mths,but all in all my meds do seem to keep it at bay. Sorry to have ranted on so long but I really do understand the pain it gives you,especially in your case Haveing a young child.But I hope sincerely that you can get it sorted. Just a word of advise before taking any meds do ask questions about them. Big Hug.

  • Its nice to know there are others to offer support. Doesnt seem quite so bleak then. The sulphazelazine def foes work for me jyst lnocks my.immume system out.

  • Hi Perhaps it's just a case of getting the dosage right. I really do hope it works out for you eventually,as I know the pain can be unbearable.I don't really know what you mean by knocks your immune system out? Can you explain?

  • I'm sorry Sunshine I didn't read your post properly,and I never noticed the Vasculitis,I've just looked it up and I won't say I fully understand but I do get the idea. You have obviously got more than RA to deal with.But keep on this site and maybe someone will be of more help than me. Good Luck were all here to support each other even if we don't fully understand.

  • Just seems as though i pick up everything going and am on constant abs and then have to stop the sulphazelazine. Thats what i mean about little ones being a germ magnet she brings it home and im the one at the drs. I do feel a lot better when im on them but it seems as though im always having to stop them. Then re-start on low dose and by the time ive get back on full dose dd has brought something else home and im not fighting it off. Dont really want to go on mxt but rheumy thinks it would be easier.

    Does anyone else have to re-start on low dose. Rheumy said start 1 per day 4 1 week then 2 on 2nd week build up to 4.in 4 weeks. Such a long process.

  • Hi sun shine have you got yourself sorted yet. I just thought I'd give you a catch up. Hope all is well.

  • Oh sunshine I really wish I could be of some help.But my only experience is with the RA. But keep pushing for answers.Good Luck.

  • Hi Sunshine, i have R.A. and i know what you mean about picking up every germ or infection thats about, i'm constantly on antibiotics and still trying to find the right meds for my pain. I'm going for an infusion in 2 weeks but have to be infection free, AB free and trauma free! I'm new to all this, but hope sharing, listening and hopefully helping people who understand.

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