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Posted 4/22/2020 2:50 AM (GMT 0)
Hey everyone I hope you all are safe and well. My meds have quit working for me so my RA doctor has put me on imuran 50mg. I have been on this for 3 weeks. I have steady got worse it feels like. When my meds quit working the fatigue pain and shortness of breath occur in me. I am having a hard time with my breathing this time. I am not sick nor do I have fever. But when I exert myself my breathing gets labored. However when I rest maybe 5 min my breathing returns to normal. Has any of you ever had this issue before? I have sent a message to my RA doctor but he is already aware of this problem.
Thanks for any advice.
Hugs
Peggy
Posted 5/21/2020 11:19 PM (GMT 0)
Peggy, I too have this happen when I am in a bad flare and my pain and inflammation levels are high. I tend to hyperventilate when in extreme pain and feel like I can't breath. It's horrible and I don't understand why I do it but I do.
I hope you are feeling better now. After a long winter I started feeling better from mid Jan-April but now I am laid up again with an oncoming flare up. I was really hoping I was in the clear for a while but seems like that isn't in the cards this year.
Take care,
Don
Posted 5/22/2020 2:44 AM (GMT 0)
Don mine is not hyperventilating it’s like when I exert myself. Most of the time it’s just walking Especially if I try to tote anything. Or if I’m changing clothes from washer to dryer. It’s crazy. But I do this every time my meds quit working. This time has been so much worse. However I am better since my doctor took me off methotrexate and orencia. I’m now on 100 mg of imuran. Still not good tho because sed rate was 102 on the scale it says normal is 0 to 30. My dr is very worried. I will be having a cat scan of my abdomen and pelvic area. When they open up for that. Thanks for you help. Hugs and I pray your incoming flare goes away.
Peggy
Posted 5/22/2020 4:52 PM (GMT 0)
Hi Peggy:

Sorry that your meds stopped working but hopefully the Imuran will get you out of your flare.When I was on Imuran it worked for 5+ years. It was the best med that has worked for me. I hope that it works equally well for you.

Keep in mind that takes 6 to 12 weeks for Imuran to start working. The maximum effect can take up to 6 months. It is important for people starting this medicine to be patient and continue taking it as prescribed.

It is best to take it with food to avoid nausea. Stay away from anyone who is sick. (not hard to do at this point in time).

I do have the same breathing problems when walking or doing house work, etc. for some time now. My Rheumy referred me to a Pulmonologist and he dxd. me with Pulmonary Fibrosis from the RA. I don't have all of the symptoms yet except for the breathing problem during walking, etc. The fatigue and sore muscles and joints we all get from RA.

I wouldn't think that you have this though since I've had severe RA for many years and you haven't. You should see a Pulmonologist however, if your breath shortness is not from the Imuran. I don't even know if that is a symptom of Imuran. I don't think so.

Take Care and Stay Safe. smile

Post Edited (msOuchie) : 5/22/2020 10:57:18 AM (GMT-6)

Posted 5/22/2020 6:51 PM (GMT 0)
Ms Ouchie I too have had severe RA for many years. I pray it’s not Pulmonary Fibrosis from the RA. He is sending me for a pft test as soon as I can get an appt. I’m sorry to hear you have that my friend. What are they doing for the Pulmonary Fibrosis? Or is there anything that can be done for it. We have so many things that can go wrong with our bodies from this stuff. The imuran is working great for me. I am on 100mg daily and since going up on that I have felt better. But my bloodwork still shows my sed rate is very high. And my crp level is also. I have an appt with him next Wednesday to talk with him about also going on acthar gel injections. We will see what all he has to say then. Thank you so much for being my friend and talking with me. It really helps.
Hugs
Peggy.
Posted 5/27/2020 4:52 AM (GMT 0)
I'm sorry Peggy. I'm on other sites as you and others, so I gave up trying to remember people's background details. Not a young chick anymore either. smile How long have you had RA? I don't want you to have PF either. That's for sure. I hope your symptoms are from something less hurtful. Great that you are feeling better. Try to stay positive. You know worrying and being stressed out hurts our bodies and minds also.

Thank you for the kind words too, Friend. Best thoughts and healing vibes to you and warm hugs. Make that cool hugs. Too hot these days. smile
Posted 5/27/2020 7:26 AM (GMT 0)

msOuchie said...
I'm sorry Peggy. I'm on other sites as you and others, so I gave up trying to remember people's background details. Not a young chick anymore either. smile How long have you had RA? I don't want you to have PF either. That's for sure. I hope your symptoms are from something less hurtful. Great that you are feeling better. Try to stay positive. You know worrying and being stressed out hurts our bodies and minds also.

Thank you for the kind words too, Friend. Best thoughts and healing vibes to you and warm hugs. Make that cool hugs. Too hot these days. smile

MsOuchie, you mentioned other sites, I was wondering if there are some other message boards that are more active? It seems like this board has much less traffic than I remember from years back. It was much more active then.
If you don't feel comfortable listing them can you send me a PM? Thank you.
Posted 5/27/2020 6:38 PM (GMT 0)
Yes I too would like to know about other sites. I know one is healingwell I’m on that one but not much interaction between folks going on there in the RA part anyway. I went to Rheumy today. My back is causing knee pain it has a nerve pinched. Also he is just so worried about my inflammation markers being so high. I decided after talking to him to go ahead and start the acthar gel injections. He says he has many patients that do very well on this. At this point we are trying everything we can.
Hugs to you all
Peggy

Post Edited (psbg) : 5/27/2020 12:42:10 PM (GMT-6)

Posted 6/16/2020 6:51 PM (GMT 0)
Hey Peggy,

So sorry you continue to be so adversely affected and med resistant to your RA. I think we were both on the Arthritis Insight site back in 2007. That used to be a very active site but I think it's gone. Is RA Warrior still up and running? That used to be very active as well.
I have been fortunate to go from being a severe case to being moderate and respond well to meds.
Posted 6/17/2020 2:30 AM (GMT 0)
I finally had to talk with my pain management doctor. He put me on the fentanyl patch to help with the pain. I’m thanking God for this because I feel so much better. Now maybe the acthar gel injection will be of help as well. I start that on Wednesday night. If we can get the RA disease under control I will be sooo greatful as I don’t want to end up being crippled by this and at the rate it’s going I’m worried. So happy that you have went from severe to moderate. I don’t know if that site is still going. I don’t think I’ve ever heard of it. Thank you so much for replying to my posts it helps so much to know and talk to others. Hugs
Peggy.
Posted 7/3/2020 2:25 AM (GMT 0)
Hi Peggy,

Any improvement?

I've been having trouble with my feet lately. Have a lot of stress going on and it's always a trigger.
Have been without a job for nearly a year and not having to dress or wear shoes. Now I'm noticing my feet don't want to be in shoes! Painful!
Posted 7/3/2020 3:46 PM (GMT 0)
Hey Weary yes I am so much better. I can do things that I wasn’t able to do and the pain patch is like a miracle for me. I am still having some problems but the pain is so much better. I had to go on glimepride for diabetes. Between the steroids and acthar Gel injections it has caused this problem. Hopefully I can get better when I get off of these two but it runs in my family so I was probably doomed anyway. How are you my friend? I hope you are better. Hugs and I love talking with you.
Peggy
Posted 7/3/2020 10:53 PM (GMT 0)
That's great news Peggy!
Not the diabetes part sad
My plight is the sadness and anxiety in my life.
My youngest son died 14 months ago and the grief is still intense. Add to that me and my husband were forced to take in his 96 year old mother. We aren't up to it and to top it off she took a fall and hit her head and fractured her humeris. She has healed now so the personal care burden and embarrassment has been lifted from me but she refuses to use her walker a lot of times and she is a fall waiting to happen. Still have to do her PT exercises with her in between the weekly visits. Peggy- I hate my life.
Posted 7/4/2020 5:32 AM (GMT 0)
Ohh my dear friend. I am so sorry. Please don’t hate your life. I can tell from talking to you that you are a good person who is good natured and cares about others. Life can be very hard I do understand that. I’m so sorry about your son. Mercy I couldn’t imagine the pain you must feel from that alone. I will say a prayer for God to help you with your grief and suffering. Taking care of another person when you have a hard time taking care or yourself put us in such stress which makes us hurt so bad. God has a purpose for you my friend. Hang in there you are in the valley that we all get in at times but he will pull you out. And you have me you can talk to anytime you would like to. I promise I will be talking to God about you and your situation. Hugs to you my friend. Message me anytime. I don’t know how much help I will be but I’m a good listener. ❤️🥰 love in Christ
Peggy
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