Hi everyone! I discovered this wonderful site this evening on Twitter. I am a Canadian/British citizen who has lived in Cambridgeshire since 2013. In 2018, I was diagnosed with severe RA. The last few years have certainly been a roller coaster, but, at the moment, my RA is somewhat stable. I look forward to participating in this group!
An introduction: Hi everyone! I discovered this... - NRAS
An introduction
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MoniqueB
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Welcome Monique! Glad your RA has settled down now and hope you are coping with the lockdown. I lived in Cambridge just north of the city centre and worked in Sawston for a couple of years in the 80s. We liked it very much despite the lack of hills but we returned to hilly Yorkshire two years later as my partner got a better work opportunity. It was a wonderful adventure though. You’ll like it here on the message board I’m sure. 💗
Thank you for your welcome NeonKittie! I have to admit that lockdown is wearing a little thin these days, but I'm coping decently. I hope you are too. Yorkshire is one of favourite areas in England, so how lucky you are to live in such a lovely location.
Just wish that soon we will be safe to be out more in our lovely outdoor places. 💗
Me too.
Hello Monique and welcome, hope you find this site helpful, supportive, informative and fun too. Good to hear that your RD is stable and that's encouraging for people to know too. I hope you will feel able to participate in which ever way you feel comfortable with, sending you some warm welcoming wishes xx
Hi MoniqueB, and welcome. Sorry you've had a rough couple of years getting to where you are now, but glad you are so much more stable. It is a great site. I only joined in November but have been so happy to meet some lovely, caring people who have been through, or are going through, the same myriad of symptoms RA presents, and have a wealth of knowledge to share on coping strategies, medications and much much more. I look forward to you participating too! Xxx
Hi Niao. Thank you for taking the time to welcome me! I'm happy to be stable too, but I know that things can change quickly. One thing that RA has taught me is to roll with the punches and make hay while the sun shines (sorry for the clichés!). And yes, I agree, the site appears to feature many lovely people - I'm so grateful to have found this place.
Hello Monique, welcome to the group. You’re right, it’s a really friendly supportive group. I discovered Healthunlocked nine years ago when I was eventually diagnosed with Graves’ disease (hyperactive thyroid with antibodies) and joined Thyroid U.K. I just couldn’t have survived without that amazing group. Then a couple of years later I developed inflammatory arthritis which was when I joined this group. I live to the south of Cambridge just inside the Hertfordshire border.
Hope you’re bearing up with this awful covid and keeping well. It’s not a time when you want to be needing any sort of medical attention.
Hello Fruitandnutcase. I'm so sorry to hear about your health issues, but I hope that your Graves' disease is under control now and, of course, your inflamatory arthritis too. A couple of years ago I spent a month in Kings Langley. I really enjoyed my stay - Hertfordshire is a gorgeous location. As I mentioned to Neonkitty, the pandemic is wearing a little thin. This week's news was especially harrowing. I hope you're bearing up too.
Thank you Monique, the Graves has been in remission since my treatment stopped which is very good. Not sure about the arthritis I’ve got all sort of creaky aches and pains at the moment. You’re right, the pandemic I’d wearing a bit thin now. I just get really fed up with people who are constantly trying to prove how ‘clever’ they are by pushing the boundaries - it’s quite clear what they need to do, then there are the ones who are still saying ‘it’s no more than a cold’ and people who refuse to wear masks or use hand sanitiser and keep their distance. My neighbour is a hospital consultant and her husband was saying yesterday that he hopes those awful interviews with people - especially young people - who are suffering might help make people realise how truly awful it is.
I'm so pleased to hear that your Graves in is remission, but, of course, I'm sorry to hear that your arthritis is currently troubling you. I know that my RA symptoms can change week-to-week, if not day-to-day. With regard to the pandemic, I too am growing increasingly annoyed with the ignorance and selfishness of some people. Given the recent Covid news, I don't understand how they can still be in denial? The 'it's no more than a cold' attitude and behaviour is baffling.
Hello and welcome Monique, I’m glad you’ve found us and that your RA is now mostly stable. I’m sure you have lots of useful advice and support for those newly diagnosed or in their first years of diagnosis.
I’m in Cambridgeshire too, recently moved out from the city to the fens countryside for a quieter way of life.
Hello KittyJ. Thank you for your welcome. I'm very pleased that I found this site too! I hope that I can provide some advice to others who have been recently diagnosed (I've already learned so much from others on this site). An RA diagnosis certainly requires a steep learning curve! How lucky that you live in countryside; I would imagine that it's a haven during the pandemic.
Hiya Monique. Pleased to welcome you to our group. Sorry to hear your RD was diagnosed severe, though stable is what we all aim for, a good place to be. I’m pleased for you having brought it under control in a relatively short time, that's encouraging to hear for other new & newly diagnosed members. You must have the support of a good Rheumy team.
Hope to see you around, you must have experiences to share & help others with. 😊
Thank you for your welcome. Your user name made me laugh - no more heels for me either! Yes, I'm very grateful to be somewhat stable these days. The first couple of years after diagnosis were, frankly, really rough, but my Rheumy team has been a wonderful resource and I'm learning to cope with RAs ups and downs. I hope to see more of you too!
Actually, due to my foot issues, I can't wear flats so in heels again, albeit lower & block heels or wedges. I’m sorry you've had a tough couple of years, RD is such a tricky disease for some in the earlier stages. Fortunately mine was only in my feet at diagnosis, that was enough! Which meds have you tried?
What sort of foot issues do you have? Interestingly, my RA started in my feet too and then spread to my knees, hands, shoulders, and jaw. Last year, I was finally able to stop wearing my trusty Clarks nurses shoes and move to more regular footwear. In the summer, I tentatively ordered a pair of block heels, which I've yet to wear.
The mediations I've tried thus far is (1) Methotrexate, started at 25 mg, am now down to 20 mg, (2) adalimumab (weekly shots), and (3) hydroxychloroquine. Unfortunately after about six months after starting the adalimumab, I had an allergic reaction to the adalimunab - I developed what resembled pustular psoriasis on the palms of my hands, the bottom of my feet, and scalp. Not fun! Then I developed sores and rashes on my chest, under my arms etc. My rheumy referred to this as 'paradoxical reaction'. In December 2019, I stopped taking the drug, and then, when that didn't clear up the symptoms entirely, I stopped the hydroxychloroquine too. After that, my symptoms started to ease, but didn't totally clear up until last summer, six months after stopping the drugs. The palms of my hands are still a bit scaly. I was discouraged that I had to stop the adalimunab, as it was really helpful in addressing my RA, but the side effects weren't worth it. My rheumy now wants to start me on olumiant or xeljanz, but I suspect that this won't occur for a while, due to the pandemic. What meds are you on?
Hi Monique
Glad you've found the group, although I'm sorry you needed to (if you know what I mean)😊
I'm very happy to hear your pesky RA is behaving itself (more or less) at the moment. Long may that continue!👍🤞
We look forward to hearing more from you in the future. Best wishes X
Welcome to the group. We all have ups and downs but that is life! I got diagnosed in 2018 end of and just started benepali as DMARDS did not suit me as seem to be sensitive to everything but there’s always hope
MoniqueB in reply to
Thank you for your welcome Deeb. I agree that it's important to have hope. With regard to the DMARDS, methotrexate appears to be working at the moment, but, as with you, I appear to be sensitive to some of the RA medications. For example, I eventually had an allergic reaction to hydroxychloroquine, so had to stop taking the drug. I also had to stop taking adalimumab. It appears to me that RA treatment often requires a bit of trial and error. Thankfully, I've read of many people who were placed on a variety of medications until one (or a couple) finally did the trick. I hope that that's the case for you with the benepali.
Welcome to this great forum. I am sorry that your RA is severe but am so pleased it is pretty stable at the moment. Long may it remain this way for you to.
I was diagnosed with RA in July 2019. Still working on finding the meds that work well for me and having a few complications along the way but am remaining as positive as I can as I have a good team behind me and this lovely forum and NRAS keep me going each day. Gail x
Thank you for your welcome Gail. I hope to remain stable for a while too. Fingers crossed. As with you, I've had a bit of a journey finding which meds work the best for me. Similarly, I've also had a couple of complications. Good for you for remaining positive and I'm so pleased to hear that you have a good team working with you. And yes, this forum is lovely!
Salut Monique, welcome to this wonderful forum. A place where you need have no fear of having to hold back. Here you really can talk about everything and there will be someone who's had a similar experience. NRAS is also a very good source of information and they have a help line and a peer to peer phone conversation service with specially trained volunteers who live with RA.
Merci stbernhard (sadly, I don't know very much French but, while self-isolating, have been working on it!). NRAS does indeed seem like a fabulous source of information - I'm so thankful to have stumbled across this site. Thanks for the head's up about the phone service!
A very warm welcome MoniqueB, it’s great you found this site, I’ve only been here a few months myself but it’s a bee hive of information shared from others in the same shoes, which I’ve found extremely beneficial, look forward to your future participation,
Thank you for your warm welcome Durrell. Yes, I'm so pleased to have found NRAS. I've only been here a couple of days, but I've already found a great deal of useful information.
Your very welcome it’s lovely we can share our worlds/daily lives together, our lovely families are so supportive but everyone here just gets how we feel & cope daily, sometimes a mountain to climb & the next it’s a breeze.. take care & enjoy all those lovely cuddles with your baby, they grow far to quickly 👶 xx
Just saying hi Monique! I was diagnosed in 2018 too, still experimenting with drugs (that sounds wrong!). Agree with your comments re the pandemic, having gone back to home schooling my kids again last week, I can feel my sanity falling away by the day! 😜Anyway, lovely to have you in the group, look forward to getting to know you better. Xx
Hi Monkeymum! Thank you for the welcome, I look forward to getting to know you better too. I too am still experimenting with drugs, but, given the pandemic, new treatments appear to have been put on hold for the time being. The difficulties of home schooling sounds trying. I know a lot of my friends are struggling. The other day, my grocery delivery man told me that, when home schooling his kids, given his druthers he would have suspended one daughter and expelled the other!
🤣🤣 Thanks for the tip Monique, I shall spend the rest of the afternoon considering which child to suspend and which to expel!
Welcome from me Monique. You will find a lot of help and support here.If you like a good laugh check out the Positive wellbeing during isolation section. There's a lot of good humoured banter which often gets quite crazy but it's a good laugh and everyone is fun yet kind and caring😁🐰
That's putting it mildly, 'quite' ! But I'll second that, it can certainly liven up one's day!😁
Thank you for the welcome MadBunny. I do indeed like a good laugh, so will definitely check out the Positive Wellbeing during isolation section. Thanks for the head's up!
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