Rheumatoid Arthritis (RA) - Introduce yourself and meet others

Let’s talk about living with rheumatoid arthritis.
As moderator of the Autoimmune Diseases group, I noticed that several people were talking about RA, but those conversations were scattered throughout the community. I thought I would start this discussion to bring us all together in one place.

Let’s grab a cup of tea, or beverage of choice, and let’s chat. Why not start by introducing yourself?

@fighter

Hi, Cyndy,

I, too had alot of hair loss on lefluonmide. I stopped it, and went back to methotrexate. Up to 50% of people on lefluonmide have hair loss. I also had lost 15 pounds in a short period of time. I went and saw a dermatologist, Antonella Tosti, at the University of Miami that specializes in hair & nails. She's written textbooks on hair and nails. She told me I had chronic telogen effluvium because of rapid weight loss and then gave me the statistic on lefluonmide. She told me to take 3 mg of melatonin at bedtime, and come back in 6 mos. When I went back my hair had grown (remember I had 2 things going on). I experience hair loss from RA, but not methotrexate.

Jump to this post

Hello ladies. I am happy for both of you but I should remind you to be careful of your kidneys with this medication. Please check them when your doctors tell you to or ask them to set this up for you. Do not want to upset you but this is very important and good luck to both of you. Peach (When using methotrexate.)

REPLY
@littlesue

I am Susie. The summer I turned 30, I developed RA. I am now 68. My 1st rheumatologist was wonderful. He educated me before anything else. The only other time I experienced that was my visit to Mayo in Rochester. Start with education. Know thy enemy.

Jump to this post

Will RA inflame and swell your feet and legs so as to keep you in a wheelchair for two months until it slowly goes away and you can walk again? And as I also have Psoriatic arthritis who knows which one is doing this or is it the both of them together? Going through thus again off and on for three years. But the worst is: I now have carpel, tunnel trigger finger and the arthritis in my right hand so that without the use of this hand I go around in circles in the wheelchair. I am 83 years old and the doctor refuses to give a prescription for an electric wheelchair. The hand surgeons will not operate because of the Corona virus and my age. As the old song goes "Stuck in the middle again!" I need an Ombudsman to represent me but they only want me to go into assisted living. I want my freedom and to continue to live in my home that I have paid for these many years. I clean my house myself and take care of my precious dog and cat very well. Shame on them if they think this is the easy way. "GOING AROUND IN CIRCLES" Any ideas anyone? Please. Peach

REPLY
@peach414144

Hello ladies. I am happy for both of you but I should remind you to be careful of your kidneys with this medication. Please check them when your doctors tell you to or ask them to set this up for you. Do not want to upset you but this is very important and good luck to both of you. Peach (When using methotrexate.)

Jump to this post

Also have liver checked. VERY important to keep all lab work done and show results to ALL of your doctors. I was on methotrexate for psoriatic arthritis and caused problems with liver.

REPLY
@peach414144

Will RA inflame and swell your feet and legs so as to keep you in a wheelchair for two months until it slowly goes away and you can walk again? And as I also have Psoriatic arthritis who knows which one is doing this or is it the both of them together? Going through thus again off and on for three years. But the worst is: I now have carpel, tunnel trigger finger and the arthritis in my right hand so that without the use of this hand I go around in circles in the wheelchair. I am 83 years old and the doctor refuses to give a prescription for an electric wheelchair. The hand surgeons will not operate because of the Corona virus and my age. As the old song goes "Stuck in the middle again!" I need an Ombudsman to represent me but they only want me to go into assisted living. I want my freedom and to continue to live in my home that I have paid for these many years. I clean my house myself and take care of my precious dog and cat very well. Shame on them if they think this is the easy way. "GOING AROUND IN CIRCLES" Any ideas anyone? Please. Peach

Jump to this post

You haven't mentioned if you go to a cardiologist. I have the bad swelling ing legs and ankles but is because of vascular disease and not my psoriatic arthritis.

REPLY
@djfd

Also have liver checked. VERY important to keep all lab work done and show results to ALL of your doctors. I was on methotrexate for psoriatic arthritis and caused problems with liver.

Jump to this post

Also with Methotrexate: It can affect the kidneys. Peach

REPLY
@djfd

You haven't mentioned if you go to a cardiologist. I have the bad swelling ing legs and ankles but is because of vascular disease and not my psoriatic arthritis.

Jump to this post

YES, I ALSO HAVE cvi CHRONIC VASCULAR INSUFFICIENCY

REPLY
@peach414144

Will RA inflame and swell your feet and legs so as to keep you in a wheelchair for two months until it slowly goes away and you can walk again? And as I also have Psoriatic arthritis who knows which one is doing this or is it the both of them together? Going through thus again off and on for three years. But the worst is: I now have carpel, tunnel trigger finger and the arthritis in my right hand so that without the use of this hand I go around in circles in the wheelchair. I am 83 years old and the doctor refuses to give a prescription for an electric wheelchair. The hand surgeons will not operate because of the Corona virus and my age. As the old song goes "Stuck in the middle again!" I need an Ombudsman to represent me but they only want me to go into assisted living. I want my freedom and to continue to live in my home that I have paid for these many years. I clean my house myself and take care of my precious dog and cat very well. Shame on them if they think this is the easy way. "GOING AROUND IN CIRCLES" Any ideas anyone? Please. Peach

Jump to this post

Hello Peach,
Shame on your doctor not giving anRx for a electric wheelchair.
As you may know you can always buy one at a medical supply store, they are expensive, but perhaps your private insurance will pay?
I don’t understand some doctors.
At 83 you need to be kept comfortable. Have you talked to your primary care doctor, or maybe the hand surgeon?
Nobody can force you into assisted care
If housework becomes a burden, there are always cleaning crews willing to clean.
How do you get around? Errands,etc?
Just a thought, some medical supply stores will talk to doctors about a patient needing durable equipment.
Maybe there are others at connect who have different answers.
Good luck
Funcountess

REPLY
@funcountess

Hello Peach,
Shame on your doctor not giving anRx for a electric wheelchair.
As you may know you can always buy one at a medical supply store, they are expensive, but perhaps your private insurance will pay?
I don’t understand some doctors.
At 83 you need to be kept comfortable. Have you talked to your primary care doctor, or maybe the hand surgeon?
Nobody can force you into assisted care
If housework becomes a burden, there are always cleaning crews willing to clean.
How do you get around? Errands,etc?
Just a thought, some medical supply stores will talk to doctors about a patient needing durable equipment.
Maybe there are others at connect who have different answers.
Good luck
Funcountess

Jump to this post

Thank you for understanding. I use the para transit bus that picks me up at the house and brings me back; for doctors and food shopping. But now food shopping is almost impossible without the use of the hand. I am working on all aspects. It is difficult but I do not give up. Perhaps after this Corona Virus is kept in check the doctors will operate on the hand. But until then I will lose weight but I will not cry. They do not deserve my tears. Shame on them! Stubborn.

REPLY
@funcountess

Hello Peach,
Shame on your doctor not giving anRx for a electric wheelchair.
As you may know you can always buy one at a medical supply store, they are expensive, but perhaps your private insurance will pay?
I don’t understand some doctors.
At 83 you need to be kept comfortable. Have you talked to your primary care doctor, or maybe the hand surgeon?
Nobody can force you into assisted care
If housework becomes a burden, there are always cleaning crews willing to clean.
How do you get around? Errands,etc?
Just a thought, some medical supply stores will talk to doctors about a patient needing durable equipment.
Maybe there are others at connect who have different answers.
Good luck
Funcountess

Jump to this post

All great suggestions, also talk with your insurance carrier, sometimes you can get them to go to your doctor on your behalf for help. Blue Cross did that for me a few years ago to get to a specialist. Give it a try

REPLY
@peach414144

Thank you for understanding. I use the para transit bus that picks me up at the house and brings me back; for doctors and food shopping. But now food shopping is almost impossible without the use of the hand. I am working on all aspects. It is difficult but I do not give up. Perhaps after this Corona Virus is kept in check the doctors will operate on the hand. But until then I will lose weight but I will not cry. They do not deserve my tears. Shame on them! Stubborn.

Jump to this post

Peach,
You should not lose weight because of your hand.
Your grocery store should provide assistance with shopping.
In California some supermarkets have their box people go with customers to assist with picking stuff off the shelfs etc.
You can always order groceries, and Rx on line. and deliver to your house.
If you need help, you need it now.
Do not wait for the cov19 to resolve.
Funcountess

REPLY
@peach414144

Thank you for understanding. I use the para transit bus that picks me up at the house and brings me back; for doctors and food shopping. But now food shopping is almost impossible without the use of the hand. I am working on all aspects. It is difficult but I do not give up. Perhaps after this Corona Virus is kept in check the doctors will operate on the hand. But until then I will lose weight but I will not cry. They do not deserve my tears. Shame on them! Stubborn.

Jump to this post

@peach414144 Good for you peach . Keep going as much as you can .

REPLY
@funcountess

Peach,
You should not lose weight because of your hand.
Your grocery store should provide assistance with shopping.
In California some supermarkets have their box people go with customers to assist with picking stuff off the shelfs etc.
You can always order groceries, and Rx on line. and deliver to your house.
If you need help, you need it now.
Do not wait for the cov19 to resolve.
Funcountess

Jump to this post

Sorry I cannot drive any m,ore because of gloucoma (Low vision) now. But I persevere. You are kind.

REPLY
Please sign in or register to post a reply.