Nielk
Senior Member
- Messages
- 6,970
I am starting this thread as suggested by other members.
For those who don't know me, I have been a long time member here. I have been suffering with moderate to severe ME for the past 11 years. I had sudden onset of the disease and was diagnosed by a ME/CFS expert. I fulfill the CCC and ICC criteria.
My level of functioning fluctuates between mostly housebound and mostly bedbound. Throughout the 11 years, I have had a few windows of better functioning when I have been able to for example plan and attend two of my children s weddings. At other times, I had been mostly bedbound for months at a time.
About six months ago, I have been diagnosed with Rheumatoid Arthritis (RA). This is a systematic autoimmune disease that mainly attacks the small joints.
Over a year ago, I started to feel swollen all over my body as if I was retaining a lot of water. My doctors didn't know why. After a while, I noticed that my finger and hands were especially swollen. MY GP was not concerned. He said many of us have our hands swell in the heat. My hands were swollen and painful with the AC blasting away.
When my ANA came back positive from routine testing, I was referred to a rheumatologist. He was very thorough with his labwork and found that I had markers for inflammation. My RA factor was negative but the more distinctive marker for RA - anti-ccp came back pretty high. He also sent me for a sonogram of my hands which showed inflammation in my wrists and knuckles. He gave me a diagnosis of RA.
He said it is very important to treat this aggressively at diagnosis in order to prevent permanent damage. So far, I have been on (and am still taking) Prednisolone (steroid), Paquenil (antimalarial med) and Humira (anti TNF). I have had no relief and the disease has been progressing.
I have now swelling and pain in my feet an ankles. I also have a stiff/painful neck. (not sure if attributable to RA). After discussions with my rheumatologist and taking into account my ME, we decided to tray Rituximab for me. I have just been approved by my insurance and am scheduled for my first infusion next week.
I will try to post here my journey with this, as some have voiced interest. I just want to caution all that this is by no means an official study. It is just my personal experience. In addition, I do suffer now from both ME and RA so it will be somewhat confusing as to how it is affecting each one.
In that vain, I am working on preparing a worksheet outlining all my symptoms that are due to ME and those attributed to RA. There might be some overlap but, there are enough distinctions, I think, to be able account for each.
I am of course exited about the possibilities here, although cautious and somewhat nervous about possible side effects/complications.
For those who don't know me, I have been a long time member here. I have been suffering with moderate to severe ME for the past 11 years. I had sudden onset of the disease and was diagnosed by a ME/CFS expert. I fulfill the CCC and ICC criteria.
My level of functioning fluctuates between mostly housebound and mostly bedbound. Throughout the 11 years, I have had a few windows of better functioning when I have been able to for example plan and attend two of my children s weddings. At other times, I had been mostly bedbound for months at a time.
About six months ago, I have been diagnosed with Rheumatoid Arthritis (RA). This is a systematic autoimmune disease that mainly attacks the small joints.
Over a year ago, I started to feel swollen all over my body as if I was retaining a lot of water. My doctors didn't know why. After a while, I noticed that my finger and hands were especially swollen. MY GP was not concerned. He said many of us have our hands swell in the heat. My hands were swollen and painful with the AC blasting away.
When my ANA came back positive from routine testing, I was referred to a rheumatologist. He was very thorough with his labwork and found that I had markers for inflammation. My RA factor was negative but the more distinctive marker for RA - anti-ccp came back pretty high. He also sent me for a sonogram of my hands which showed inflammation in my wrists and knuckles. He gave me a diagnosis of RA.
He said it is very important to treat this aggressively at diagnosis in order to prevent permanent damage. So far, I have been on (and am still taking) Prednisolone (steroid), Paquenil (antimalarial med) and Humira (anti TNF). I have had no relief and the disease has been progressing.
I have now swelling and pain in my feet an ankles. I also have a stiff/painful neck. (not sure if attributable to RA). After discussions with my rheumatologist and taking into account my ME, we decided to tray Rituximab for me. I have just been approved by my insurance and am scheduled for my first infusion next week.
I will try to post here my journey with this, as some have voiced interest. I just want to caution all that this is by no means an official study. It is just my personal experience. In addition, I do suffer now from both ME and RA so it will be somewhat confusing as to how it is affecting each one.
In that vain, I am working on preparing a worksheet outlining all my symptoms that are due to ME and those attributed to RA. There might be some overlap but, there are enough distinctions, I think, to be able account for each.
I am of course exited about the possibilities here, although cautious and somewhat nervous about possible side effects/complications.
