concerned

[cpr02]

know no one can really give medical advice here but hoping for a bit of perspective and hope.....

I've been diagnosed since 2019 and experienced the following

regular flare ups and multiple steroid injections

sickness and dizziness due to medication

not being able to due basic things around the house

not being able to walk

not being able to do the high intensity exercise I enjoy

not being able to do things plan things see friends etc without thinking how long will it be and when will I be able to go home and take pain killers

I can't do my full range of duties at work and have had high levels of sickness

I took steroid tablets when asked to and they made me feel depressed anxious and have panic attacks

finally I have been allowed to go on a biologic however now my toenails are bruised/ nails coming off either due to inflamation infection or side effects of medication....treatment plans for that may interfe with ra meds

has a lot of people had such difficult experience when diagnosed or am I just unlucky?

will it get better ?

[Brushwork]

To be honest, it takes a while for medication to kick in. It also takes a bit of trial and error to find the right medication for you. The steroids are necessary to lower your inflammation but you could ask for subcutaneous injections instead of the tablets, but you'd have to taper off the tablets first.

The early stages and getting diagnosed are a difficult period, it is not easy to come to terms with a chronic illness! The adjustments take time to deal with.

Be kind and forgiving to yourself.

I hope things improve for you soon.

Go gently

[cpr02 in reply to Brushwork]

I'm not on oral steroids when I was I found they really went for my mental health I have had lots of steroid injections with very little effect x

[Deeb1764]

I think many go through the process of just feeling awful as compared to those that can adapt quite quickly and it is so individual this illness. It took just over 2 years for me to find a med that worked which is Olumiant and that was a game changer for me. Anaphylactic shock severe reactions and just feeling low that my life had changed so much. I am in a slightly better place but typically sorted the RA main issues then was told I had fibromyalgia as well and this is truly biting my behind right now.

What worked for me was being proactive with my GP and RA team searching researching what would help me and this forum.

Yes many a dark day trying to understand how my life had changed BUT I am also very aware that things have got better too though small I am still thankful.

You have to dig deep but you will get there x

[oldtimer]

Rheumatoid Disease is a difficult long term illness. It often takes a long time to find the right treatment and each treatment takes time to be evaluated.

And coping with the adjustments needed to face a long term illness, the adaptations to life style, the unpredictability of everything is depressing, exhausting and makes you wonder if you will ever climb the hill to sunnier times.

Long term, however, you adjust and learn how to cope in the best way for you. But keep on at the rheumy team, they will assume you are OK and coping otherwise!

[KittyJ]

I think it’s quite a common experience in the first few years after diagnosis, not you being unlucky. Finding the right meds can take time and experimenting to find the combination or one that works for you. It certainly took me a long time and even then I had to change drugs as they lost their effectiveness over the years.

As regards the work issues have you spoken to your manager about adaptations or alterations to your work? NRAS have a publication that will tell you your rights at work and how to go about getting your employer to help you. You shouldn’t have to just struggle on. I can’t help with the toes as I haven’t experienced this but I hope you get it sorted out soon.

[cpr02 in reply to KittyJ]

hi yes I have my manager has been very supportive and has let me adjust hours taken Me off physical duties to more paperwork however I can't help feel this will be time limited they won't be able to do this constantly x