I’m rare apparently!: Just had a f2f with my... - NRAS

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I’m rare apparently!

23 Replies

Just had a f2f with my rheumatologist upshot is I have both RA and PSA usually have one or the other not both . I don’t have psoriasis but it’s in the family. So a game of messing with meds . First off upping MTX. I’ve had problems with the higher doses before so going to try again. He doesn’t want to change Baricitnib as it’s doing some good and there is no guarantee the next will be as good . We are going to play it month by month . I have appointments until December every month with the biologic nurse then will see consultant in December. I do need a steroid injection in one of my knuckles as well. Oh the joys of autoimmune diseases.

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23 Replies
PSAWarrior28 profile image
PSAWarrior28

I'm RA seronegative and have PSA as well. Unfortunately I get symptoms from both of them (at least I think so). The rheumatologist has assured me that the treatment path is the same for both.

in reply toPSAWarrior28

Oh so glad I’m not on my own. It so difficult to know which is which. I have fibromyalgia as well and Sjögren’s as well . The gift that keeps on giving.

vonniesims profile image
vonniesims

00h, me too. Had RA for years. Diagnosed as having PA as well in July though no-one in my family or myself has psoriasis .I am continuing Methotrexate, but had Benepali changed to adalimumab.

I am sero neg too.

After 4 months I'm not sure if its working or not, but definitely am less fatigued. Good luck

in reply tovonniesims

Looks like a wee club is starting

Knip profile image
Knip in reply to

Perhaps consultants are starting to see that you can have both together. My adult son has psoriatic arthritis and plaque posoriasis and they are now saying they think that he has RA as well. The RA runs imy family and the psoriasis in my husbands. Not much fun for him when he has a flare. HIs skin gets so bad and his joints...well, you will know what I mean regarding them! Kx

in reply toKnip

Poor thing x

Knip profile image
Knip in reply to

❤️

tyncwmmarchhywel profile image
tyncwmmarchhywel

Its all or nothing is nt it,never heard of auto immune till I had it.

Mmrr profile image
Mmrr

Glad you are being cared for over the next few months.

Lolabridge profile image
Lolabridge

Not rare but special! 😊

in reply toLolabridge

Like that one 😁x

Always thought you were special too 😁

in reply toMarionfromhappydays

I like you 😁

Deeb1764 profile image
Deeb1764 in reply to

Listen P Girl you got to stop collecting AI badges of honour x

in reply toDeeb1764

😂look whose talking x

lolamylo profile image
lolamylo

Yes, indeed I was told I have both and it is unusual. Plus severe fatigue, fibro and Sjogrens too. My Consultant who I do trust has said my treatment can keep both conditions stable-my disease has been active since diagnosis in 2011-PSA arrived about 2016 approx. I cannot tolerate Methotrexate and have tried all the biologics, had infusions etc to no avail. So on a JAK inhibitor now with 2.5mg of Prednisolone daily. This only gives me CRP readings of somewhere between 75mm &84mm and ESR of around 50-70mm. Not perfect but I can manage and have learned to adapt, adjust and say no if I am in too much pain and fatigued. I hope your medical cocktail works. Things I have found helpful is chair yoga when I can and swimming in a very warm pool when I can. All the best x

in reply tololamylo

Ooo are we twins I have all you have mentioned x

lolamylo profile image
lolamylo in reply to

I hope your journey helps you manage to live well. x

Sheila_G profile image
Sheila_G

Some people are just plain greedy 🤣. Seriously, it is good that you are being monitored so closely and any changes can be dealt with accordingly. Good luck with everything. x

in reply toSheila_G

😂that’s me all or nothing x

Nana246 profile image
Nana246

Hi there I’m seropositive RA diagnosed nearly 12 months ago so just learning still. Just wondering how the PSA was diagnosed and what the symptoms were. Hoping it’s ok to ask

in reply toNana246

Don’t ask don’t learn ..

Well I couldn’t walk without pain for years but told no RA in ankle. Did loads of physio also had orthotics made and these did help. One day physio noticed I had no forward or backwards motion in my foot or ankle. MRI said nothing wrong but she and I both knew there was. I was referred to a more senior physio you did a Doppler scan and it showed many tares in my Achilles and calcification on my Achilles. I had a steroid injection helped for 4 weeks then it started again. I looked up everything on RA and calcification and PSA was mentioned. So I did a diary of problems. It showed that my pain in my shoulder could be tendon related so again I researched it and it showed tendinitis was probably the cause which is a symptom of PSA . All this information linked up to other pains and the pattern of pain . Showed my Rheumatologist he examined me and told me I had both RA and PSA. I find I can’t rely on medics as they only look at the problem in front of them they never collate all the symptoms together. You have to be your own advocate. It’s taken me over 5 years to work this out 🙄

Nana246 profile image
Nana246

Thankyou for that information. I have been taking methotrexate for 5 months and added plaquenil about a month ago. I guess guess I was very naïve thinking that all pain would go away on these lovely drugs. I know now it’s early days for me. I have had right knee drained and steroid injections twice and - touch wood - that has settled down but I still have a lot of pain left knee and hip. Rheumatologist tells me I have mild osteoarthritis from X-rays. It feels anything but mild and was a major pain for me before diagnosis. She put steroid injection in left knee about a month ago but this has had little effect. Oh the joys. Thanks for all your help. 😊

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