I have posted on here before whilst needing advice for my systemic joint pain and inflammation.
I have since been given a blanket diagnosis of inflammatory arthritis due to my consistent symptoms and MRI showing bilateral effusion in a number of joints. I haven’t had recent blood tests due to Covid-19 so am unsure if that would further diagnose me but I have been put on Prednisolone for 4 weeks, currently just done week 1 with 4x 5mg a day. So far I haven’t had much change in pain as it seems to wear off by the afternoon (I take it in the morning). I have three weeks left on a taper before being put on hydroxychloroquine.
I am partly pleased that I have finally been put on some medication after a year of no answers but as most people would be, I’m quite anxious about my future on these meds as I’m only 22.
I would appreciate any advice based on previous experience or things I can be asking my consultant in the meantime as I don’t really have anyone that fully understands what it’s like to live with the pain, fatigue etc on a daily basis.
Written by
BethRidout24
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Sorry you have had to join us. You are young and it’s so hard for people to understand. Many many people live a normal life on RA meds. Keep a diary and note what may aggravate your joints. Fatigue is a sign that your disease is active it may settle once your meds work but this will take time and can’t be rushed,your first medication maybe the one or you may need to try a few first. Patience is the name of the game with RA. Rest rest rest is the main way to manage uncontrolled RA hard but even harder at your age. Be positive you will get there it’s just a case of when. Family and friends will find it hard to understand unless you have it you just don’t get it. You know where we are for help a moan or a laugh.
They do other publications too that might help you.
I was diagnosed in my twenties and I’ve been on hydroxy for 20+ years and I have been fine on it although I now take other meds too. If you have any questions just ask, whatever they are 😊 Welcome to the group Beth.
I noticed your post a while back re swollen red knees; glad you have a general diagnosis for the moment and are receiving some form of treatment.
You are young and modern drugs can bring much better disease control than those who have already suffered most of their lives, had access to at the start of their RD journey.
Best of luck with settling down of inflammation as time goes on.
Hi ..in a similar situation re no answers,except i am more than twice your age :-).
This must be very tough on you ,i know how bewildering it feels and you have your life ahead of you.
I feel similarly wary about meds and things too,but i do read some postive things on here.
I do hope they can get the pain under control for you as that in itself is so exhausting as well as the anxiety of not being completely sure.
Im sure you will get some good advice on here there is alot of kindness floating about the place
Hello and I'm sorry you are suffering this badly. Trust me, there is light at the end of the tunnel. Once you've found your drug that helps you, you'll feel better even though it might not seem that way at the moment. I was diagnosed 5 years ago at the age of 20 and it seems unfair when you are young. However, I've been on methotrexate injections and hydroxychloroquine and I can tell you that I'm doing well on my medication. I can do most things in moderation and my quality of life is pretty good. So hang in there for now. It'll get better x
Thank you for providing some positivity. I know it is very much trial and error right now but I am being patient. My biggest fear is that it will stop me from exercising as I’m very active and usually fit. I’m already struggling with knee problems that I can only assume have come from the condition but try my best to exercise every day and keep myself ticking over. X
My advice is not medical it is about your approach to it: Firstly, research, find out as much as you can about RA and any medication. Secondly, consider your diet and lifestyle, I would suggest that people who take good care of themselves by eating a healthy diet and taking plenty of exercise, do better with RA. Thirdly, take care of your mental health, which means finding a balance that suits you. This is vital because you will, most likely, need to re-balance from time to time.
I hope your path is not too bumpy and you find a positive and beneficial way to deal with RA in your life.
Hi there i am so sorry that you have had this diagnosed .At any age its a life changer.....
I was in my early thirties.
I am now in my early 70s.
The best advice i can give you.
Try keep your life as stress free as you can.....yoga and meditation any form of relaxation.....gentle stretching exercises and knowing when enough is enough...
Look after your joints .....wear protective gloves and rests on your hands...
You must put yourself first.....
But most of all enjoy life in a new way ...laugh ....smile....positive....know your own body and listen to it.....
If forty years ago some one had given me this advice my life would have been so different ....
Hi Beth, you have received some very good information and advice already. With all the very good drugs available today there's a good chance that once you have the right drugs combination, you'll be able to lead an active live. The difficulty I had at the beginning was to get the people around me to understand what having RA in the early stages means. Pain, fatigue etc. I downloaded booklets from the NRAS website and read them together with friends and family. That helped an awful lot to get them to understand what I was going through and gave them a chance to really help me as well. Keep in touch. All the best.
Thank you again everyone for your kind words. There seems to be such a lovely community on here! All advice is really appreciated, I will definitely take it on board moving forward x
I started like you prednisolone tapering over three months. I thought I had to finish the steroids before starting the hydroxychloroquine but then I got a copy of the letter to my GP and realised that if the steroids worked I was to start on hydroxychloroquine at the same time. Hydroxychloroquine takes a while to kick in and I almost it a bit late so that they overlapped and I didn’t have a gap between the two.
If you take hydroxychloroquine make sure you see your optician for an eye check before you start and get regular eye scans - I get a copy before I go to see the rheumatologist and they scan it into my notes. It’s very important to make sure things are ok with your eyes - your optician or rheumatologist will tell you what to look out for.
I took the prednisone over five years ago and I can’t remember if I took it all at the same time or took it twice a day. I remember for me it worked really well, I went from being a creaky wreck to feeling like Wonder Woman. If you feel the effect is wearing off it might be worth mentioning it to your pharmacist and seeing what they suggest.
My rheumatologist has told me that if the steroids decrease my pain I will then be started on the DMARD’s straight after finishing my course. I am due to get an eye test soon anyway so I will definitely put this at the top of my list.
I think the prednisolone helps but the dose might not be strong enough to last the whole day. I think I will phone my doctor on Monday to discuss.
I am a bit puzzled. Do you have inflammatory osteoarthritis or rheumatoid arthritis as several of the group are mentioning? I have had inflammatory osteoarthritis for many years as have some of my family going back generations. I have a very high RA factor but told that I don't have RA. After a radical hysterectomy (ovarian cancer) I found that the pain and swelling got worse and that this was common amongst patients with no ovaries. I have been on prednisolone for 3 years now for my organizing pneumonia and IPF (I seemed to have got one with the lot) and have not found it has any affect on improving my joint aches. In fact, when I was first put on steroids of 50 mg per day for 3 months, the inflammation got so bad I couldn't walk. Anyway, my current lung specialist has prescribed Osteopanadol 3 times per day and it has certainly helps the pain and swelling in all my joints. I've been on this regime for 3 months now and provided I stick to the dosage, I can manage everything reasonably well. It has taken 4 different specialists to get the right support. Get more than one opinion.
Take care and keep safe during these frightening times.
I am being treated as an RA patient. Although they have labelled it as IA as they are not 100% certain it isn’t psoriatic or lupus but are 90% sure it’s RA.
Definitely still early doors to see what will help me but I am positive I’m on the right track.
Thank you for your advice, I hope you are safe also.
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