I just found this link after years of living alone wi... - NRAS

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I just found this link after years of living alone with RA

4seasons profile image
9 Replies

I am a RA patient since 2002 . How did it begin ? Well my son got married to an American lady which upset my family . The stress on me was too much , my knee swelled and in pain Back in UK my body went override, couldn't walk, mostly all joints were affected then had a blood test which confirmed RA. Lots of medication over the years which did not work , Humira infusions which caused an infection in my wrist, and few others which all affected my immune system. I am on 10mg of Prednisone daily and pain killers. Because of recent hip replacement and fear of infection I am not allowed to take anything else but the pain is getting intense , hands , fingers , feet &toes are getting badly affected!

I look forward to read your advices, your experiences !

Thank you for reading my post

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4seasons
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9 Replies
Mmrr profile image
Mmrr

4seasons I don't have any suggestions to give you, I've never been on biologics, but just wanted to say welcome to the site. Others will be able to give you the benefit of their experiences.

4seasons profile image
4seasons in reply toMmrr

Thank you Marr

oldtimer profile image
oldtimer

Sorry to hear that you have problems but this is the place to air them and get support from people who share your problems!

It would be worth too having a look at the treatment pages on the NRAS website, so that you can see what alternatives there are and can then discuss them with the rheumy team.

Often they seem to assume that you are going along quite OK, despite you saying that you are still in pain, having unmanageable side effects etc. It's called lack of listening skills!

I go with a summary of how I've been since last seen (which no-one seems to record) and a list of questions. I persist with these until they are answered - no 'We'll see you in ... months then' and ushering me out of the door before they are answered!

4seasons profile image
4seasons in reply tooldtimer

Thank you oldtimer

Shalf profile image
Shalf

Hi 4seasons, Stress no matter the circumstances seems to be the above average reason for the onset of RA. I believe it to be the trigger for me. I have only once had an injection of steroid into my wrist which had no effect. I dislike steroids very much and choose not to medicate myself with them. Other people get alot of relief. You must speak to your Consultant and/or a member of your Rheumatology team to assess your present health. Welcome to the forum , keep in touch, you will be glad to be here. Suzie xx

Kalimera57 profile image
Kalimera57

Steroids have never had any effect on me either and then you get other problems from being on them. This is a great site for lots of support and good advice. When I was diagnosed 27 years ago there was nothing like this of course. Fortunately for me my friend’s partner had it and he gave me excellent advice for a few years until he left England.

I hope things improve for you soon.

4seasons profile image
4seasons in reply toKalimera57

Thank you Kalimera57.

BonnieT profile image
BonnieT

Hi, welcome. I’m fairly new myself but have found this site immensely helpful. About four months ago I started methotrexate and have increased dosage twice and expect may do so again next month. I’ve been weaned off the prednisone but told I could take in event of flare which I had a double-whammy of this past weekend because I did too much yard work. I’ve taken one tablet a day and am finally feeling better. I work part time and NEED the job or I would stay home. But if I stayed home I would get worse because of inactivity so I may as well go in. I hope they get you on something good to help you and I hope you have a good doctor. I was offered plaquenal (spelling is wrong) but after seeing that a side effect could be loss of vision I settled on methotrexate with my doctors ok. If you are not 100% happy with your doctor, I hope you are free to find another. I’m a breast cancer survivor and I asked my oncologist (who is wonderful) to recommend a better primary care doctor (who is wonderful) who said I needed to see a rheumatologist and she recommended the wonderful one I now have because she did her hospital internship with her and knew how good she was. I’ve been blessed with wonderful doctors and I wish the same for you!

4seasons profile image
4seasons

Thank you BonnieT and I am so pleased that you have found help . I have a very good GP and consultant but the med. given over the years reduced my white cells hence I suffer from chest infections. I don't want anymore biologic med.

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