Husband diagnosed with RA

Posted by virgo1952 @virgo1952, Apr 11 1:34pm

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)

Hi @virgo1952 — There is an existing discussion for Rheumatoid Arthritis where your post will receive more visibility and you can meet other members discussing and sharing their experiences with RA.

> Groups > Autoimmune Diseases > Rheumatoid Arthritis (RA) – Introduce yourself and meet others
https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-ra-introduce-yourself-and-meet-others/

Thank you for advocating for your husband. I'm sure he appreciates your help getting started on Connect. It sounds like he is already doing some good things to help – better diet and exercise. What is the hardest for him?

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I have had a diagnosis of RA now for 10 years. Methotrexate 20 mg., was great to me until about 3 years ago, when my liver tests spiked. I still take it, but the injectable 7.5 mg dose, so that it avoids the first pass on the liver. I've been on different biologics now. The longer I've had RA, the longer I notice that if I eat too much sugar, I will get inflammation from it. I do believe the healthier you eat the better in my case, but I still love sugar! Keeping active is great. I haven't done so, and my muscles get spasm. I have spinal issues too, but not from RA.

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@johnbishop

Hi @virgo1952 — There is an existing discussion for Rheumatoid Arthritis where your post will receive more visibility and you can meet other members discussing and sharing their experiences with RA.

> Groups > Autoimmune Diseases > Rheumatoid Arthritis (RA) – Introduce yourself and meet others
https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-ra-introduce-yourself-and-meet-others/

Thank you for advocating for your husband. I'm sure he appreciates your help getting started on Connect. It sounds like he is already doing some good things to help – better diet and exercise. What is the hardest for him?

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Hi. You are everywhere!!! Thank you so much virgo

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Great name! Thank you. Good to know about the liver. I will watch to see how the Dr deals with that( regular testing). I’m hoping he will do ok on this dose, but I’m nit sure. He likes sugar and always has. He was very active throughout his life; and Robert Redford thin. He is trying to eat like me. I had to start good eating habits early on for my vanity and one of my occupations. It just never left me. I am a creature of habit (and self-denial).

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@johnbishop

Hi @virgo1952 — There is an existing discussion for Rheumatoid Arthritis where your post will receive more visibility and you can meet other members discussing and sharing their experiences with RA.

> Groups > Autoimmune Diseases > Rheumatoid Arthritis (RA) – Introduce yourself and meet others
https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-ra-introduce-yourself-and-meet-others/

Thank you for advocating for your husband. I'm sure he appreciates your help getting started on Connect. It sounds like he is already doing some good things to help – better diet and exercise. What is the hardest for him?

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Diet. He has been slender all his life. I have had to be diet minded for obvious reasons vanity and $. But, I had he coming to the Y when he retired (after his blood) and he does great. Like me, he enjoys being active. Just active in a different way now. We are biking an island tomorrow with wildlife. You know what that means, John!!!!! Photo shots…….

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@virgo1952

Hi. You are everywhere!!! Thank you so much virgo

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🙃

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Hi @virgo1952
I hope your husband will create an account on Connect and join the discussions about rheumatoid arthritis and introduce himself here:
> Groups > Autoimmune Diseases > Rheumatoid Arthritis (RA) – Introduce yourself and meet others
https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-ra-introduce-yourself-and-meet-others/

I'm also glad that you started this discussion as someone who lives with a person with RA. I'd like to bring @vickiekay @guzmanbarb @jewel8888 @boomerexpert @crhp194 @kozlo52 @candrgonzalez and others into this discussion and ask them to share insights on how a family member or friend can support someone with RA.

I learned so much from my friend who has RA. For example, I used to prefer a firm handshake and even judged a light handshake as signifying weakness of character, pretty biased thinking my friend was quick to point out. What if that person had a hidden illness like RA that prevented them from giving a firm handshake? Well, I had to change my thinking, right quick.

Virgo, what have you learned from your husband's diagnosis and how has it changed something in your routine or thinking? @fighter, what would you like people who don't have RA to know about the condition?

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@colleenyoung

Hi @virgo1952
I hope your husband will create an account on Connect and join the discussions about rheumatoid arthritis and introduce himself here:
> Groups > Autoimmune Diseases > Rheumatoid Arthritis (RA) – Introduce yourself and meet others
https://connect.mayoclinic.org/discussion/rheumatoid-arthritis-ra-introduce-yourself-and-meet-others/

I'm also glad that you started this discussion as someone who lives with a person with RA. I'd like to bring @vickiekay @guzmanbarb @jewel8888 @boomerexpert @crhp194 @kozlo52 @candrgonzalez and others into this discussion and ask them to share insights on how a family member or friend can support someone with RA.

I learned so much from my friend who has RA. For example, I used to prefer a firm handshake and even judged a light handshake as signifying weakness of character, pretty biased thinking my friend was quick to point out. What if that person had a hidden illness like RA that prevented them from giving a firm handshake? Well, I had to change my thinking, right quick.

Virgo, what have you learned from your husband's diagnosis and how has it changed something in your routine or thinking? @fighter, what would you like people who don't have RA to know about the condition?

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I do not have or take care of a person with RA. Thus I am unable to help…so sorry.

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Hi Colleen. Thank you for reaching out asking about my husband and how it has changed my/our life. Early days for him. Fifth week of medication ( takes once a week) Our daily activities have also been changed due to the virus, so some of this is driven by that. Just an example, I walk everyday and he has found it’s to hard on him. He now bikes beside me most days going around our lake and through the neighborhoods. Hot baths are on the menu and he uses those for relief. (Still at times relies on dr prescribed medication) He stretches in bed before getting up, so I will go in and make our morning coffee (I make better coffee anyway, our secret!). We still plan to fly to Sun City, AZ once the travel band is lifted. I rented a home that provides a golf cart and will rent bikes for us to use so it is easier for him. That’s new for us. The not being able to walk long distances. But, a golf cart and bikes are doable. I recently ordered a heating pad for him to use while sitting. He gets up frequently and will walk around so he doesn’t become stiff and painful. ( I read on the treadmill so much that now just sitting reading seems weird) So we are made for each other😊. I think we’ve both had things happen, so I guess we just will do and figure it out along the way. My thinking is usually pretty positive. This is his second auto-immune disease; and I’m just focused on educating he and I to manage his RA. It will be his responsible to do what’s best for him. I will be there to support that.

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@crhp194

I do not have or take care of a person with RA. Thus I am unable to help…so sorry.

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@crhp194 Thanks for responding . Weigh in anytime, about anything. I’m always interested in people, their lives and their thoughts. virgo

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@virgo1952

Hi Colleen. Thank you for reaching out asking about my husband and how it has changed my/our life. Early days for him. Fifth week of medication ( takes once a week) Our daily activities have also been changed due to the virus, so some of this is driven by that. Just an example, I walk everyday and he has found it’s to hard on him. He now bikes beside me most days going around our lake and through the neighborhoods. Hot baths are on the menu and he uses those for relief. (Still at times relies on dr prescribed medication) He stretches in bed before getting up, so I will go in and make our morning coffee (I make better coffee anyway, our secret!). We still plan to fly to Sun City, AZ once the travel band is lifted. I rented a home that provides a golf cart and will rent bikes for us to use so it is easier for him. That’s new for us. The not being able to walk long distances. But, a golf cart and bikes are doable. I recently ordered a heating pad for him to use while sitting. He gets up frequently and will walk around so he doesn’t become stiff and painful. ( I read on the treadmill so much that now just sitting reading seems weird) So we are made for each other😊. I think we’ve both had things happen, so I guess we just will do and figure it out along the way. My thinking is usually pretty positive. This is his second auto-immune disease; and I’m just focused on educating he and I to manage his RA. It will be his responsible to do what’s best for him. I will be there to support that.

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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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@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?

Liked by virgo1952

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Dear all,
I am so concerned about patients with autoimmune conditions who are prescribed hydroxychloroquine and not able to obtain enough for a therapeutic dose. My sister is in this situation. Her insurance refused to provide her with needed pills so she had to pay for it out of her pocket. In spite of the fact that this drug has not proven to be a deterrent to COVID-19, (reference the latest video from Mayo) ,"rumors" and anxieties are pushing it out of the hands of those who need it. Any thoughts?

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@estrada53

Dear all,
I am so concerned about patients with autoimmune conditions who are prescribed hydroxychloroquine and not able to obtain enough for a therapeutic dose. My sister is in this situation. Her insurance refused to provide her with needed pills so she had to pay for it out of her pocket. In spite of the fact that this drug has not proven to be a deterrent to COVID-19, (reference the latest video from Mayo) ,"rumors" and anxieties are pushing it out of the hands of those who need it. Any thoughts?

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Hello @estrada53. Great discussion topic around autoimmune disease and prescribed Hydroxychloroquine. You might also be interested in this discussion:
-Hydroxychloroquine (Plaquenil) Shortage Concerns: Autoimmune Disease https://connect.mayoclinic.org/discussion/hydroxychloroquine-concerns-for-autoimmune-disease/

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