Feeling very positive tonight and would like to share my story. I am a 68 year old lady who has suffered from RA for 45 years. Today my husband and I took a walk of about a mile and on Friday we went to town to meet a friend for coffee, again I walked about a mile. Nothing special you might think, but for me this is something really special. Over the past 20 years I have spent much of my time in a wheelchair and prior to that hobbled around in agony. Pain was my life.
Now due to modern aggressive medications and multiple surgeries I can walk without too much discomfort. Being able to walk again is amazing. In my wheelchair I used to say to my husband that I would give anything to have a week of life with normal mobility. Now I am enjoying being able to take my 9 month old baby granddaughter for a walk in her pushchair.
I still have many problems to deal with but mobility has given me a new lease of life. Best wishes to everyone. It is never too late to regain an improved quality of life.
Pam
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Pam-51
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What a wonderful story! I am soooo happy for you! After a TKR I am able to walk again without a walker(I used the walker for almost a year!) I started walking every day that the weather lets me! Thank You for making my day!! I was diagnosed with RA in 2013! Best Wishes to you!
Thank you so much for sharing. Positive stories help us all especially when we feel there's little hope of good outcomes. Little triumphs are good to hear.
Thank you so much! You give me hope! I have had RA for 30 years, and I am 50 years old. Quality of live is everything and I want to live a long quality of life. I keep the faith they will find a cure in our lifetime.
Waking up to your story is wonderful! Very happy for you!
Congratulations Pam on your great achievement!!! Its been a long road for you but you've got there!. Normality is something us RA sufferers rarely get a glimpse of, so thanks for posting this positive story, it give us all hope for the future. Stay well 🤗 X
Such Wonderful news to read, so happy for you after all these years not only have you taken a walk you were able to take your Grandaughter for a walk!! Amazing lady , thank you for sharing
Great news so pleased for you, this shows how far meds of come since you were diagnosed which is good for anyone starting on their RA journey. It's improved in the 25 yrs I've had RA .
How lovely Pam to read such a positive story as sometimes this site can sometimes seem like a collective moan. Although I do believe h that sharing worries and concerns can be both helpful and therapeutic.
I too have had RA a long time - 35yrs - and while I am currently at a surgery/wheelchair stage, I am certain I will come out the other side with increased mobility.
How precious to be able to take your granddaughter for a walk. A
Hi Pam, I can't begin to tell you how pleased I am for you. I am also 68 and have had both RA and OA plus possible PsA for many years. My life is now in a wheelchair or mobility scooter when I go out and it worries me so much over what the future will hold and I feel so sorry for my poor husband having to do so much for me. I can't even dress or undress myself or get in and out of the bath anymore. I am on Methotrexate, steroids, hydroxy, and many other medications including tramadols and morphine. I am waiting to have a complete shoulder replacement and then when I have healed from that to have a knee replacement. I long to lead a more normal life, even to just walk along to the park which is only a few hundred yards from my house.
How did you manage to get back your life after so long? I just feel that I am only going to get worse and can't see any end to it. I have asked about being put onto a biologic but my rheumatologist says I wouldn't meet the criteria. I try and manage to keep smiling most of the time, but sometimes it just overwhelms me and I have a few tears. Sorry to ramble on for so long.
Holly I have no replaced joints like you yet am on a biologic after MTX & hydroxy failed me. Your quality of life sounds poor; how can they say you don’t meet criteria with all that going on? Can you not email advice line with all that’s in your post above, so it’s in writing? I find if you don’t make a stand they seem to think all is fine. xx
Didn’t mean to highjack post Pam: I think that’s absolutely amazing after years in wheelchair, so happy for you 😊, enjoy your new found freedom x
You sound like me a few years ago. Have always tried to be positive but several times over the last decades have despaired. The first time was when my son was born in 1983 and when pregnant I was symptom free, only for R A to return with a vengeance when he was 15 months old. His childhood was a difficult time with many hospital admissions and only steroid treatment gave me short term relief.
Fortunately, methotrexate appeared on the scene and provided some respite from deterioration. When I was having awful problems with mobility a knee replacement was refused as I was too young! I was 40! I bought my first wheelchair in 1996 and had a right ankle replacement in 2000. Not very successful, but provided some pain relief. First replacement in Leeds, which gave me some improvement.
Then left ankle caused problems. Unfortunately, I then developed breast cancer and required mastectomy and chemo. Don’t like to promote it but chemo is the best treatment for RA and I was symptom free for two years!
Had my left ankle fusion 2008 which was very successful and then got biological therapy in the form of Rituximab. Because I had had chemo, wasn’t eligible for tnfs so biologics we’re now available, which weren’t on offer previously.
Started Rituximab and have had infusions for 11 years which have been effective. It has been a life changer. Has stopped deterioration to a great extent. A right hip replacement and a left knee replacement later I am mobile. I now have problems with my immune system due to Rituximab but immunoglobulin therapy provides a lifeline.
Thank you for taking the time to reply to me Pam. I just feel that as the years go by, I am getting nowhere and I am deteriorating all the time. Eight years ago, I didn't need sticks let alone a wheelchair and I could dress and undress myself, get in and out of the bath and go up and down stairs. Obviously I was in pain, but I could do it all. Now I just can't do any of those things and yet my treatment has not been changed in any way. I just can't seem to get through to the rheumatologist at all. She just looks at me and tells me I am doing well on Mtx and I know I am clearly not. It all seems so unfair that the treatment is out there, but I am not being given the chance to try it. I am really glad for you Pam and you must be elated over your new lease of life. I will try to keep thinking positively while continuing to state my case. xx
Dear Pam-51,
That's absolutely fantastic after 20 years using a wheelchair. The exhilaration of being able to walk again must be enormous!
I was diagnosed just 6 months ago and had already sent my husband out to buy a wheelchair as I could not even get up from a chair at that time. We had been keen hikers, going on walking holidays, up to 10 miles a day, so you can imagine how I felt.
My rheumatologist said it was very unusual for the RA to be so aggressive so early on. Fortunately, my progress to "probably in remission" has also been fast and we have recently managed a holiday walking up to 6 miles a day.
I had feared that RA was only a path of deterioration, but your post has given me hope that, even though I may suffer bad relapses in the future, there is always hope of improvement.
I wish you huge joy with your granddaughter and all other areas of life.
Hi Pam-51, I felt your joy reading your post😃. I am so glad you are able to go for walks unaided again. I too wish for that day to come, waiting for my second knee replacement in the near future. Thank you again for sharing
WOW Pam! This has brought on the tears....of happiness for you and your family. You must feel amazing! It really is true that we unintentionally take our mobility for granted when it's there. I recall many years ago when I was recovering well from an operation, a lady in a wheelchair in our ward asked me to go downstairs with her so she could have a smoke. She said she would rather walk again more than anything in the world and she did too! It's truly fantastic! You must.feel so proud and so.happy to be enjoying all those special moments with your granddaughter especially taking her out in the pushchair. A mile is a a good walk! Well done you! Inspiring story. xx
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