Inflammatory Arthritis - New here

Hi Everyone I am new to this group and I live in NZ. There are no support groups for inflammatory arthritis in NZ. I have ankylosing spondylitis (inflammatory arthritis). I have had it for a long time but diagnosis took a while. I have been on salazopyrin, methatrexate, and meloxicam. This caused me to pile on huge amount of weight and also BP went up to 230/190 causing a medical emergency. Currently I have cortison injections in my hip joints in the interim. I have now lost 15kg and my BP is now normal again. Have Rheumy appointment on Wednesday. Don't know what the next step is a little concerned...

8 Replies

oldestnewest
  • Hi and welcome from someone else with AS, and kiwi connections. There definitely is a New Zealand support group:

    arthritis.org.nz/campaign/

    I'm pretty sure they have support group meetings around the country (mum used to be a regular at their exercise classes, etc), though will probably be attended by people with a mix of RA, AS, etc.

    Also, if you are wanting to be part of a bigger forum for ankylosing spondylitis (this forum is mostly RA), then try one of the two big international ones, which both include kiwis: kickAS and the spondylitis society of America (google ankylosing spondylitis forum and both should come up). For information about the condition, the National Anklosing Spondylitis Society in the UK (NASS) has some great downloadable information, including their "back to action" exercise programme. Appropriate exercise and a daily stretching routine is probably one of the best things you can do for yourself if you have AS.

    Hope you have a good rheumatologist appointment. You probably should about be eligible for anti-tnfs now, having gone through the other meds. Definitely ask about it if they don't suggest it themselves.

  • Thank you for the information. Much appreciated. Yes my Rheumy said in a letter to my GP he was thinking of trying the anti tnf's. A bit concerned about them as I cannot find anyone who is on them who can tell me if there are any pitfalls etc. I will definitely join the campaign sos to speak. Once again thanks..

  • If you join the SAA forum forums.spondylitis.org/ubbt... there is a woman called Shirley there who is from Wellington and on antitnfs. Loads of other folk there on antitnfs for AS too, so you should be able to get good answers.

  • THat is funny my name is also Shirley and I am from the Wellington region as well. THanks for the link.

  • Thanks for the support group link. I have now joined there as well. I have my Rheumy appointment this avo. However it is the last thing I feel like as I have had a tummy bug and feel very washed out. It was interesting that when I had the bug I was sorer than I have been for many years I couldn't lie anywhere that didn't hurt. Maybe good day to go to Rhuemy..

  • Hello, and welcome. Although most of us on here have RA, we're a mixed bag so all those with other types of inflammatory arthritis just as welcome. And anti-TNfs are used a lot for RA so loads of people here use them, tho' not me as aI take similar drugs to you. Hopefully one of them wil pop along to tell you about their experience, but if not do a search as there have been many posts about the good and bad aspects of these drugs.

  • Welcome waikanae. There are a few here with AS so you're not alone you're very welcome & enjoy being with us here. I don't know much about it only what I've picked up here as I have RD but we're a mixed bunch so hopefully you'll relate to some of our issues!

    I'm sorry to hear you put on weight & it just goes to show how each of us reacts differently to meds but it's great that you've lost 15kg. I hope your BP is still monitored & if necessary medicated as you now have history of it going so high.

    So are you off all your meds now then? If so hopefully your Rheumy will have a plan for your start treatment quickly. Whilst the cortisone injection will ease the inflammation & therefore pain in your hips it's not treating the cause is it? I've been fortunate & I've reacted well to my MTX alongside many other meds & not needed to try too many to find the ones that work for me. I believe anti tnf's can be the answer for many though I hope you don't have too long to wait, here in the UK I believe you have to jump through hoops to qualify as funding is required.

    Let us know how your appointment goes won't you. Many members are on anti tnf's/biologics so I'm sure you'll get lots of help when you know just which your Rheumy thinks would be best for you. Good luck for tomorrow.

  • Hello and welcome we all here have a few "issues",so feel free to update as required.Just because you are on the other side of the planet you are amongst friends.

    I too have AS and RA and I will have good days and bad but still taking meds there is a wide range which you will find out,and which work for you.Good luck

You may also like...