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 diagnosed with any other diseases?
I was diagnosed with Rheumatoid Arthritis in 1994 when I was 36 years old. I knew very little about the illness other than it was very painful. I didn't look into it at all, actually. I just trusted my Doctor. He eventually referred me to a hospital where they specialized in RA. It was some years later that Ankylosing Spondylitis was diagnosed.
At this time, I have looked up information on both diaeses; I do not like the look of either of them. About five weeks ago I also had a Dexa scan, which 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? How much did you know about these conditions before the diagnosis and where did you find information afterwards?
My reaction to Rheumatoid Arthritis was "thank God they have an answer to why I am suffering with this pain." I was put on Voltarol, but it was not really helping that much. I used to see my doctor regularly; he would draw fluid from my knees and send it away to be examined for infection levels. He later sent me for a different blood test, which confirmed that I carry a gene called HLA-B27, this is when I started to look more into my condition. I was able, thanks to the internet, find many 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? What are the results?
I started with Voltarol then Leflunomide, Plaquenil, and Sulfasalazine. Then after finding HLA-B27 I was put on Methotrexate and Infliximab which is a biological medication this has been the best.
How did diagnosis affect your everday life? What did you have to change in your daily routine in order to manage your conditions? Did you make any adjustments?
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. I retired in 2010 after working 21 years. I was glad to retire especially since I was the Computer System Manager and a new system was being designed because it require med to do a bit of travelling for my meetings and it was really taking a tolld 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 used disabled cutlery as I am unable to grip. I use many different gadgets for day to day life. Very fortunate for me that 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 works, so they are unable to help day to day. It is just my husband and me.
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 for 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 doctor's advice, but if you think that the medication is not helping you, speak to them and ask for it to be changed.