Husband diagnosed with RA

Posted by virgo1952 @virgo1952, Apr 11, 2020

My husband recently (5-6 weeks) was diagnosed with RA. Prior to that, 8-9 years ago, he had what looked like a rash and was diagnosed with a blood disease (ITP). (Believe is is also considered a autoimmune disease) He was hospitalized and first given high dose steroids. When that proved unsuccessful, he had a cancer like treatment infusions for 6-8 months. He got better, follow up blood five + years out looked good. Then bomb! He is taking merhotrexate (20+mg) every Saturday and will be re-evaluated in six weeks. I joined this site in October, 2919 , after colon cancer and a re-section. So, I wanted to share his story with the group, in hopes he will pick up the thread and have the great support I have had since joining. Good days and bad days. . We just adjust to what we can do. I’m still getting used to my “new” normal too. Any suggestions that have worked for you would be appreciated. He exercises smartly. I would like to see if anyone has changed/found a certain diet/foods helpful in keeping inflammation in check. He’s a newbie, so we would live your feedback. virgo 1952 (my online name)

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@kolo52. What a roller coaster ride for you. My husband, you and I were all born in ‘52!!! Believe it or not, based on his symptoms, I thought it was RA. I worked in a hospital and care center, so I have been around different diseases. He was fine one day and then the next day, I found him half laying on the bed, with his feet on the floor trying to put his pants on. I’m like “what are you doing?” He told he hurt really bad in his joints. So, two days later, we were at the doctors. Tested him. It was Reactive C Protein that was above normal. But, it was classic RA symptoms. He is taking methotrexate once a week and will be tested again after six weeks. This is his second autoimmune disease. The first was 8-9 years ago when I thought he had a strawberry rash (June here is strawberry eating month) but none of the rash was raised on the skin. He went to the dr and two hours later he was in the ER and then admitted into the hospital. Diagnosed with a blood disease (ITP). Before that day, my husband had never been sick except maybe a cold. The steroids didn’t work and then more tests. I thought I was going to lose him, but because he had been so healthy, he was able to fight for his life. So, RA is not going to be easy for him, but is a fighter. He’s used to being very active and now he will have to retrain himself. I think his system is able to tolerate this medication well. He has no underling medical issues. This is the only medication he takes. No liver or kidney issues. So, I’m not going to worry about what may happen going forward. We had plans before the virus and will adjust the plans to fit his needs. One day at a time.

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Hello @virgo1952. I hope you are well. I read that your husband has been diagnosed with ITP and RA. I am happy that you feel his system can tolerate his medication and that you are taking it one day at a time. How is your husband doing? As someone living with a person diagnosed with ITP and RA, what are some things you might recommend to another person in your shoes?

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@kellyhahn1

Hello @virgo1952. I hope you are well. I read that your husband has been diagnosed with ITP and RA. I am happy that you feel his system can tolerate his medication and that you are taking it one day at a time. How is your husband doing? As someone living with a person diagnosed with ITP and RA, what are some things you might recommend to another person in your shoes?

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@kellyhahn1 Thanks for reaching out. I think I mentioned I was a member of Mayo Connect prior to my husband's RA diagnosis. He was recently diagnosed (5-6 wks) and is just starting medication. His ITP was diagnosed 8-9 years ago and has had no flare ups and great cbc tests after he had 8 months of Rituxan infusions. That was a scary time for us. Not knowing if the infusions would work. I balanced between caring for my husband and taking care of myself. I just wouldn’t let myself think anything negative. With the RA, I find myself observing him for signs of pain and exhaustion. We talk about how he is feeling, etc. Things are different, but doable. I have my own changes since my colon re-section which he has had to adjust to, so we both realize that’s part of a disease process. It’s early days for both of us. Just have to see how he does with the medication. virgo

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I just read this article exercise and RA that I thought might be helpful.

Getting to know what you don’t know about exercise and rheumatoid arthritis: https://www.mcmasteroptimalaging.org/blog/detail/blog/2021/08/19/getting-to-know-what-you-don-t-know-about-exercise-and-rheumatoid-arthritis

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@kozlo52

how was your husband diagnosed with RA? I was first diagnosed with it 31 years ago. The bloodwork did not show evidence from the rheumatoid factor. i had joint pain everywhere. the big thing that showed up in the bloodwork was the sed rate (ESR). my sed rate was well beyond 20 (o-20 is normal). Sed rate is a measure of inflamatory/pain one might feel. I was started on methrotrexate and my liver enzymes went off scale. In y worst days my sed rate was up to 150. i had gone thru all the biologic modifiers with somevery severe results. when i was on kineret, i had kidney failure and gained 43lbs and was hospitalized for 1 week till they could get my kidneys back to normal. when i was on humira i had torn retinas in both eyes (at different times), which had to be repaired. after that i told my PCP i will regulate my RA with prednisone and oxycodone . to day i stll do. I have had 2 knee replacements on my right knee,1 knee replacement on my left knee, i hip replacement on left hip. this is how i reacted to the RA drugs. My bodyis very sensitive to medicine.... i am 68 years old and will need my left hip and left knee replaced (16 yeas old and 17 years old respectively. i would be curious to know what medicine your husband is on. i aslo had dry corneas inboth eyes from the RA which requires Restasis in both eyes daily. RA is a progressive degenerative disease . I also have stenosis in the lower back (L4-L5), which requires cortinsone shots in the back. I have stenosis in my neck which can't be operated on. when a person is on pain relievers (NSAIDS), such as ibuprofen, remember to take it with food, or your stomach will get very bad. Being an RA patient i cannot donate blood, due to my still active RA. I cannot take any NSAIDS due to previous kidney failure and my stomach cannot stand theheartburn(even after stomach fundoplication). Being on prednisone and having RA means i am immuno supressed, which with this corvid-19 virus i have to wear a mask where i go... good luck and god bless to you and your husband and happy easter!..... kozlo52

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Sorry to hear what you have been going through, praying that we can get right dose of right medicine

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@marhambu

Sorry to hear what you have been going through, praying that we can get right dose of right medicine

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i hope you can find the right medicines also. when the RA medicine Humira gave me torn retinas in both eyes, and Kineret gave me kidney failure , i told my PCP that no more RA medicines. I have managed my RA with 4 mg of prednisone and 10 mg of oxycodone. however in the last 21 years i have had 21 operations, most of which were due to RA. i have had both knees replaced twice (due to wear ); left hip replaced once. i have problems with both shoulders arthritic. my neck is inoperable with stenosis and misalignment; my lower back has L3-L4-L5 stenosis. i have learned to live with pain at age 69. i also have bent fingers on my right hand. people in general do not know how debilitating this RA can be. there are many things i cannot do, such as cutting grass, hedges. i can't put a wrench in my hands. god bless you both in finding a solution.....kozlo52

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Rheumatoid arthritis (RA)
My husband has recently been diagnosed and having very difficult time. Please I feel powerless

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@diamondletty

Rheumatoid arthritis (RA)
My husband has recently been diagnosed and having very difficult time. Please I feel powerless

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Welcome @diamondletty. It just pulls the rug out from under your feet when a loved one is diagnosed with a chronic condition that we don't know much about. Luckily you don't have to navigate this new world of rheumatoid arthritis and caregiving alone.

I moved your message to this existing discussion.
- Husband diagnosed with RA https://connect.mayoclinic.org/discussion/husband-diagnosed-with-ra/

I did this so you can read the previous posts and connect with @sueinmn and @virgo1952 who also have family members with RA, as well members who live with RA like @lobito @petersgpcp23 @lemartin417 @novice @boomerexpert @kozlo52. They can share tips with you to help you understand the world living with RA and tips for supporters.

Letty, how is your husband taking the diagnosis? What are you finding the most challenging right now?

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@diamondletty

Rheumatoid arthritis (RA)
My husband has recently been diagnosed and having very difficult time. Please I feel powerless

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My husband and I have faced a number of life-altering diagnoses over the years - diabetes, RA, lung disease - Please can you tell me a little more about your husband and his diagnosis? Is this the first time one of you has been told you have a chronic condition? That is always a frightening thing for everyone- the future suddenly looks very uncertain. How will the condition progress? How will it affect our plans? What will he be able to do?

Let me say that there are many kinds of RA, and every person is affected in a different way. There are literally dozens of ways of treating it, and managing symptoms as they occur.

The best things the two of you can do are to learn what type of RA he has, find the best rheumatologist you can to treat him, and learn everything you can about his diagnosis.

The next step is to make every lifestyle change you can to improve his prognosis - exercise, diet, weight loss if recommended, adequate rest, stress management, and finally medication.

There are 2 sides to medication- not taking more than necessary, and not refusing to take any. What? RA inflammation damages the affected joints or organs, so taking meds to reduce inflammation minimizes damage and keeps you healthy longer. On the other hand, relying solely on medication to reduce pain often leads to overuse of pills, so it is important to incorporate diet, exercise and other strategies to decrease the effects of aches and pains.

It takes time to get used to the idea of a chronic, usually progressive condition, so attitude and mindset are really crucial. On the bright side - this is a challenge to live with, and is seldom fatal.

Note to spouse/caregiver - assist ONLY as needed, don't coddle.

Come on back with any questions either of you has. Also expect some anger or irritability as he gets used to this "new normal" and reassure him that you can manage it together.
Sue

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Just recently diagnosed with RA ARTHRITIS. We are seeing a rheumatologist which took a while to get an appointment. First Dr.White prescribed a steroids and weaned him off...back on daily dose of prednisone once daily and twice a day hydroxychloroquine...I have changed his diet
No sugar
He's trying to lose weight
We also have been going to pain management. I have fibromaliga for about 6 years
It's under control. Scott retired Navy and he's in so much pain as well as depression. Breaks my heart feeling powerless. This is only the beginning. Dr said it takes about 6 weeks fir ra meds to work
As well if this one will work. I go to same rheumatologist firm but a different doctor.
My PT helps
I also do what I can for my elderly parents
Dad's 93 mom 87
I take them to doctors and pick up meds at the base. Very hard to leave Scott alone as I do that for my parents. We also have Charlie, a miniature Datsun which is great
Such a personality. Ty for your help.
Prayers help alot.🙌🫶🙏
Blessings
Letty

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