Hello Painful247, could you please introduce yourself in a few words?
My name is Lynne I am 68 years old, married with two children and 6 grandchildren
How and when were you diagnosed with rheumatoid arthritis and with ankylosing spondylitis? Are you suffering with any other diseases?
I was diagnosed with Rheumatoid Arthritis in 1994 I was 36 years old. I knew very little about the illness other than it was very painful. I didn't look in to it at all I just trusted my Doctor. He eventually referred me to a hospital. It was quite a few years later that Ankylosing Spondylitis was diagnosed and by now I looked up information on both illnesses and didn't like the look of either of them. Then about five weeks ago my consultant arranged a Dexa scan, this confirmed that I now have Severe Osteoporosis.
What was your reaction to the diagnosis and how did you manage your first months with the conditions?
My reaction to Rheumatoid Arthritis was "thank God they have an answer to why I am suffering with this pain and was put on Voltarol take let's which wasn't really doing that well. I used to see my Consultant regularly he would draw off the fluid in my knees and send it away to be examined for infection levels. Then he sent me for another blood test which confirmed that I carry a gene called HLA-B27, this is when I started to look more into my condition and when the computer have me all the answers I needed. Sadly my daughter has recently been diagnosed with this rogue gene also.
What treatments were you prescribed at the beginning, and how did it change over time? How difficult is it treating 2 chronic conditions at the same time?
I started with Voltarol then Leflunomide, Plaquenil, Sulfasalazine. Then after finding HLA-B27 I was put on Methotrexate and Infliximab which is a biological medication this has been the best.
How was your everyday influenced by the diagnosis? What did you have to change in your daily routine in order to manage your conditions?
Nothing changed for me, I still managed to go to work unless I had flare ups which occasionally caused me to lose time, but working for the NHS they fully understood my problems and I retired in 2010 after completing 21 years. I was glad to retire as being a Computer System Manager and a new system was being designed, so I had to do a bit of travelling for meetings and it was taking a toll on me.
What things are the most difficult to adapt to? How do you manage your symptoms?
Now I use a shower instead of a bath as I am finding it more awkward to get out of a bath. When I have flare ups I have to use disabled cutlery as I am unable to grip. I use many different gadgets for day to day life. Very fortunate for me I have a lovely husband that helps me to manage many things. I will try anything to help when I am having a flare up. I have knee and wrist straps. Plus different gels to apply to the affected area's.
What helps you better cope with difficulties caused by the conditions? What about your family/friends’ support?
All my family work so they are unable to help day to day do it's just my husband and myself.
Do you think support groups and online patient communities and forums help patients feel less alone? In what way?
I don't attend any support group as such, but when I go from my infusion I meet other people as we sit in a circle and have a chat. The online site is good for people because you can help one another who have only just started down this bumpy road.
What message would you like to share with other patients suffering with rheumatoid arthritis or ankylosing spondylitis?
My advice is to listen to your Consultant's advice, but if you think that the medication is not helping you, speak to them and ask for it to be changed.