RA severe pain, what helps?

Posted by ead @ead, Dec 21, 2023

I am diagnosed in the last 4 months with rheumatoid arthritis. We are still trying to find the right treatment to help. Azathoiprine made me sick. I can’t take methotrexate because of my lungs (RA lung disease). I am on humira but have only had 3 doses. My joints are so painful I can hardly walk, my wrists and hands have major trouble trying to hold anything. I don’t think I have ever had pain like this. The=Dr. put me on prednisone for 2 weeks. It helped but he does not want me on it long term. Right now I take 2 ibuprofens when I wake, 3 hours later 2 extra strength Tylenol. I repeat that alternating throughout the day. By late afternoon I can move around better but the pain is never really gone. Sitting down and standing up is a major challenge. A am grateful for any tips, suggestions, or feedback. I am at my wits end and Christmas with family is only 5 days away.

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My onset was also dreadful and acute. Give Humira a chance. It’s not an immediate effect but instead more cumulative. I was beginning to feel relief in about a week. It took several weeks to begin to let my breath out.

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I had 2 doses (at 2 weeks apart). Then I got Covid. I had to skip a dose and take it after Covid. I am really hurting in the mornings. After ibuprofen and Tylenol a couple of times I can at least move. I have prednisone left and have been tempted to put myself of it but hang back since Dr. didn’t think I should go on it again. He said I could do 1/day but I didn’t find that helped. Suggestions?

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What dosage is your prednisone per pill? So to make sure I understand, you are administering two preloaded pens of Humira every two weeks?

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@ead

I had 2 doses (at 2 weeks apart). Then I got Covid. I had to skip a dose and take it after Covid. I am really hurting in the mornings. After ibuprofen and Tylenol a couple of times I can at least move. I have prednisone left and have been tempted to put myself of it but hang back since Dr. didn’t think I should go on it again. He said I could do 1/day but I didn’t find that helped. Suggestions?

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At the risk of sounding like your Mother, do you wear masks everywhere you go inside? When you are on immunosuppressants you can’t get away with minimal effort to avoid infection. You really have to develop aggressive habits to avoid infection of any kind - because it can get away from you quickly and then you’re fighting in a hospital. Wear masks, stay out of crowds when possible, keep your hands off your face, wash your hands frequently - everything you already know about.

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@pb50

What dosage is your prednisone per pill? So to make sure I understand, you are administering two preloaded pens of Humira every two weeks?

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Prednisone is 5 mg.
I take 1 humira shot every 2 weeks.
I understand about wearing a mask. I don’t know how I got Covid. I don’t go many places!

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You will hear a lot of us say that the beginning was the worse. Add to that the trials of finding the right drug it can seem overwhelming (because it is).
Although you are brand new to this world of R.A., you have begun, and have your diagnosis! You, your doctor and Pharmacist will navigate through to the right drugs.
It seems the big problem right now is the extra challenge of Christmas coming. It is true that your RA is not going to disappear in the next 5 days, so talk to your family now, regarding plans for Christmas. Explain your present 'organizational challenges' and ask
for their suggestions and help. This is the time to strip away all the extras and non-essentials, and focus on what /who is important.
You can think of this as their first educational opportunity as you all face this new world of arthritis.
Whatever conclusions you come to, I hope you are able to take in some good moments together.
Merry Christmas!

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@thisoldewe

You will hear a lot of us say that the beginning was the worse. Add to that the trials of finding the right drug it can seem overwhelming (because it is).
Although you are brand new to this world of R.A., you have begun, and have your diagnosis! You, your doctor and Pharmacist will navigate through to the right drugs.
It seems the big problem right now is the extra challenge of Christmas coming. It is true that your RA is not going to disappear in the next 5 days, so talk to your family now, regarding plans for Christmas. Explain your present 'organizational challenges' and ask
for their suggestions and help. This is the time to strip away all the extras and non-essentials, and focus on what /who is important.
You can think of this as their first educational opportunity as you all face this new world of arthritis.
Whatever conclusions you come to, I hope you are able to take in some good moments together.
Merry Christmas!

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Excellent advice. I actually timed how long it took after taking 2 ibuprofen to be able to walk without major pain this morning in preparation for going to our daughter’s house on Christmas. Looks like I need 2 hours before we leave. Luckily she only lives a short distance from us. She has been a great help so I know she “gets it” and has planned accordingly. No other family is close by.
I appreciate your input. Thank you. This is not am easy journey for my joints or lungs! Thanks again.
Any and all suggestions and hints are welcome.

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@ead

Prednisone is 5 mg.
I take 1 humira shot every 2 weeks.
I understand about wearing a mask. I don’t know how I got Covid. I don’t go many places!

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Hmmm. For what it’s worth, 5Mg is a really low strength. Of course he may have you taking multiple pills but given your severe acute onset (I’m having flashbacks!) I would expect he’d be open to increasing that. I realize that right now he is trying to assess what is the minimum dose that’s effective - but he needs your feedback. You need to let him know that you are in misery.. that it takes you two hours to get it together to get out of the house. And you realize it may take longer for Humira to kick in but could you increase prednisone in the meantime. At least a little. He may not understand your misery level.

Christine gave great feedback. Do try to carve out some You time to enjoy this season.

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He had me on 3/day for a week, then 2 for a week, then 1 for a week. Been off for about 10 days. Today he said to go back to 2 and see how I do.
Actually, I find the ibuprofen and Tylenol a few hours apart during the day helps. It’s just the initial morning pain that is overwhelming. By afternoon things are better. There is always discomfort but it’s tolerable.
I see the Dr. next month. He has been quite responsive when I have left a message for him. He always calls me back, so that’s a good thing.
I agree Christine’s advice was very well put.
I am so very happy I decided to post instead of just reading posts. It is true, support is out there and I now know not to “suffer in silence”. Thank you so much.

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@ead

He had me on 3/day for a week, then 2 for a week, then 1 for a week. Been off for about 10 days. Today he said to go back to 2 and see how I do.
Actually, I find the ibuprofen and Tylenol a few hours apart during the day helps. It’s just the initial morning pain that is overwhelming. By afternoon things are better. There is always discomfort but it’s tolerable.
I see the Dr. next month. He has been quite responsive when I have left a message for him. He always calls me back, so that’s a good thing.
I agree Christine’s advice was very well put.
I am so very happy I decided to post instead of just reading posts. It is true, support is out there and I now know not to “suffer in silence”. Thank you so much.

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That sounds like a productive relationship with the Rheumy. So you started on 15mg and tapered down. 15 should do you some real good if it gets really bad. But if it’s not dreadful 10 will probably take the edge off.

I’m in love with prednisone. I take it at 5am so as not to disrupt nighttime sleep. When I'm on it, I’m happy, energized and productive, and pain free 🙂 If only it wouldn’t make my bones spongy. So I am inclined to hit the inflammation between the eyes and get off the Prednisone as quickly as possible.

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