Hi I was diagnosed with ? RA in November 2014 on my first visit to see Rheumatologist. Following lots more tests, this is now confirmed. I started with symptoms mainly hands fingers wrists. A few days before I saw consultant I had pain in ever joint. Any movement was painful. I was put on 15 mgs of steroids, which helped enormously. The side effects were nearly as bad as the RA. The dose was reduced to 10mgs, which has improved the side effects. In the last month I had 2 flare ups, first hands wrists elbows and shoulders. Second flare was every joint again which lasted a week. I see Rheumatologist next week and wonder what might happen now. I have other health problems. What questions should I be asking please. I am making a list to help me. Any help would be greatly appreciated. Thank you.
Hello. I can't help you because my first appointment with the rheumatologist is in a weeks time but I hope I can gain something from the replies as I'm quite anxious particularly about the side effects of the different drugs. I also don't quite understand about the flares because I seem to be in constant pain particularly in my shoulder.
Hi Matron
i was in constant pain until I started the steroids.
Hi Wendy does your pain go away completely on steroids?
Hi Matron
my pain does not go completely but is so much better, plus the swelling and stiffness are so much better in my fingers
Hi Wendy,
When I was first diagnosed I was given kenalog which is a steroid shot, I was pain free for around 3 weeks following the shot and I had no side effects - I suffer with RA in all of my joints so I would highly recommend kenalog if this is offered to you. I had another shot in December when I was in a lot of pain. I have now been on Sulfasalazine for over a year, which includes weekly/monthly blood checks. I do worry that this has stopped working for me as I have been suffering with flare ups recently however, I am hoping this is only down to the cold weather. I'm sure each individual case will be different though you will be offered medication to suit your needs. Ask any questions regarding the risks with taking medication. e.g. my rheumatologist is reluctant to give me methotrexate because I am 30 and would like to start a family in the near future; methotrexate has to be stopped 6 months before trying for a baby and in some cases can cause infirtility (Sulfasalazine has these effects on men). Try not to worry as you have your appointment next week so your pain will hopefully ease with medication.
Take care xx
Thank you Victoria. It's good to know there's a drug suitable for young women who may want to have a baby. I read Sulfasalazine was ok. I'm 61 though so no chance for me! Have read about Methotrexate as well, the side effects have put me off. Having said that when it comes down to it I'll try anything to get rid of the pain.
Tgank you Wendy
Yeah I'm with you there, if it comes to the crunch I'll absolutely take methotrexate regardless of the effects as I don't want to go back to how I was before the diagnosis. I wish you the best of luck with your appointment and medication xx
Thank you for your reply Victoria
Hi Matron,the consultant/doctor will probably start you off on the cheapest drug possible.If you live in the uk you will get a yellow card,that will be marked up every time you have a full blood count taken.
Thanks danny. I wonder which is the cheapest drug? Will have to do my research.
I have tried various drugs...methotrexate.improved a lot until consultant raised dose then irritating my liver and bladder so had to come off it.it did thin my hair too.I am on predisalone steroids and sulfasalzine.they tried me on biological ones embrel +humira where its self own injection. Then rituximab ..its dripped into you through candula.nothing helping n was going to start another one but since December have been tripping up n speech not right.from Friday my right leg giving way and my body jerking.had ct but can't see anything so waiting for urgent MRI + see neurologist. I said I would try anything but now I am worse do read up on stuff.maybe I have been unlucky
Thanks for that Frances, I will look into it more as I would prefer not to go onto Methotrexate at this age to be honest. I've never heard of those other medications so I will be sure to bring it up :-)
That's the great thing about this forum. You get more information here than some of the doctors.
I'm so pleased I joined, I wish I knew this existed in 2013, hearing you're not the only one makes things a little easier. Thank you
Francis your next drug will probably be toccilmub if they tell you that you have to take methotrexate with it,tell them you want it on its own.
Before this last health concern they said I was going on toccilmub and I said I couldn't as I have diverticulitis so could make stomach bleed etc.was supposed to then go on abatacept but with recent tripping and jerking and speech problems it has been cancelled and I have to remain on other drugs am on til MRI and neurologist sort me out Danny
Hi Wendy, I have had RA for 10 years, I am from the United States so I am sure they do things differently here but I was wondering if they haven's told you about biologics. I was put on prednesone and Methotrexate at first, this was before my diagnosis was confirmed. The prednesone raised my eye pressure and I now have glaucoma so I encourage everyone to get their eye pressure checked if they are taking this. Steroids do make you feel better but do nothing to help the condition. I was miserable, could hardly move and my rheumatologist recommended Humira. He said the side effects are scary but at that point I didn't care. I decided I wanted quality of life. I have been on it for 10 years, I have no joint damage and no pain. The only side affects I have are sinus infections and fever blisters. I went gluten free and have not had a fever blister in 8 months! I also take 10 mg. of Arava. The Methotrexate was weakening my bones and causing stomach problems. I know everyone is different, I have a friend who takes Enbrel and has had the same results. If you have a fever blister or any kind of infection you cannot take your shot, if I miss a month of shots my fingers start hurting but this is the only time I have pain. My Doctor said that starting on a biologic quickly prevents joint damage. It was very scary for me at the time because biologics were new but I followed my doctors advice and I am glad I did. He has since retired and I have a new doctor and she did not change a thing. Good luck!
Hi Janis
Thank you for your reply. I live in Spain but am from the UK, so it makes things a little more difficult for me. I have very quickly seen a Rheumatologist. I have other health problems. I have high blood pressure, Pre Diabetes, and liver problems. This makes it difficult with some treatment. I will get my eyes checked as glaucoma is in my family.
I also want a life but I am scared of the side effects of different tablets.