Anxious about being immunosuppressed

Gillyd62

Hello everyone I was diagnosed with RA in July. I am just coming to the end of my second course of steroid tablets and have been on methotrexate for four weeks now. I am so anxious about being immunosuppressed. I don’t feel I can go to restaurants or do anything really. How do other people cope??? Thanks so much for your help.

btw I’m 60 years old.

helpline_team

Hi @Gillyd62

Thank you for posting on the forum, I’m sorry to hear about the anxiety you are experiencing regarding being immunosuppressed, due to your RA. We understand how difficult that can be to manage at times and finding how others cope can be really helpful.

Please re post on our 'living with arthritis' forum, where you will receive more replies, this is a great place for sharing the experiences of others as well as getting more support.

I also hope the links I have given you will be helpful, NRAS is the National Rheumatoid Arthritis Society and may also be a useful contact for you if you do not already have it.

https://www.versusarthritis.org/news/2020/november/ask-the-expert-newly-diagnosed-with-arthritis/

https://www.versusarthritis.org/about-arthritis/conditions/rheumatoid-arthritis/

https://nras.org.uk/

Best wishes

Lynda

Helpline Advisor

jamieA

Hi @Gillyd62

I think that's a really hard question to answer. I suppose it depends on a whole host of circumstances - everything from anxiety levels, where to go, how to get there and even what to eat and much more. Covid hasn't helped for sure - and the fact I had bouts of pneumonia just after being diagnosed 2 years ago. For me it's meant that since being diagnosed and medicated I've changed my lifestyle and I also do a bit more planning ahead. I'm a 66 year old male - I now carry a backpack with a collapsible walking stick, masks and sanitizer with me. I also do an LFT test next day if I've been somewhere with lots of people.

For the where to go I avoid tight spaces. My nearest two restaurants are both small and 'intimate' - pack in too many tables - so I wouldn't dine there. This summer I've eaten outside a good number of times but that's not feasible in winter so I'll look for large, bright airy places.

For the how to get there - I haven't been on a bus or taken a taxi in 2 years. I've taken a couple of short train journeys - at off peak times only though and masked up. So I either take the car or walk. I'm thinking of getting a bike - maybe an electric one.

For the what to eat - I'm just a bit careful. Although it's not necessary, I gave up alcohol as I felt that the amount of pills I take made it a risk I really didn't need. I don't eat soft cheeses, unpasturised anything or pate. I've just read an article that states that caffeine can affect how well MTX works - but that's a step too far for me I'm not giving up my coffee!

We hosted a family event at the weekend with about 12 people from 6 different households. Rather than a formal thing we had a buffet style and kept windows and doors open in the kitchen/dining area. I've also got a permanently set up gazebo in my back garden that we've used even in winter.

My family and friends have been really good in understanding what I can and cannot do.

I think the key is to adapt to what's possible - life will be different but don't let it stop.

Gillyd62

Thank you so much. That’s really helpful .